The following was written a few days before my recent surgery on 11/4/09. More to come on the events leading up to surgery. I couldn't bring myself to post this until now. Too raw.
The panic wells up inside me like molten lava ready to spew forth from a rumbling, angry volcano. I have to swallow it down by sheer force of will in order to keep my composure.
When I was 20 years old and facing the same surgery, I had the naivete of youth to blind me to all the possible outcomes of the horror that lie ahead of me...cutting open my chest, pulling it apart like so much taffy, only to cross clamp my aorta, stop my heart and as they manipulate it,cut into it and hope to God it starts back again after laying dormant in my chest for 4-5 hours. It never occurred to me then that I could die, that I could stroke out or that I could have emboli fly off into my vessels that would go hurtling towards the smaller vessels of my brain causing long term cognitive deficits. What I wouldn't give now for that cloak of protective armor called youth and ignorance. It allows the young to engage in risk taking behaviors without regard to consequences because they believe nothing bad will happen. It's not within their radar to even consider it. It is youth's greatest strength. It allows for great risks and even greater accomplishments.
When I was a child, I always felt older than my age. As an adult, I never felt as old as I was. And so it is now. I don't feel fifty. I don't feel sick. I don't feel sick enough to warrant risking another surgery. And I don't believe that I will die. But that is my internal drive to persevere talking. My brain knows better; it knows more. I am now unwillingly armed with graphic knowledge of the prevalence, incidence risks and complications. I know all the statistics that we don't like talking about with our patients. Only I am the patient. My doctors treat me with professional courtesy, as a fellow provider. They tell me all the gory statistics with clinical detachment, without cushioning the blow. But, I already knew them. I did my research. But it still feels like a sledge hammer in my chest when I hear it spoken out loud.
Never one to show fear, I push it deeper inside. But I am afraid. I am afraid that my children will never know how much I loved them, how much I wanted them and how incredibly proud I am of them. Afraid I will not see them grow into themselves and discover who they will become. Afraid I will miss out on the best part of my life...that with my beloved partner who it took me 36+ years to find. Afraid for her. Afraid for them. Afraid they will feel abandoned. It is only human to wish we have made some impact on others and I suppose I am no different.
But my life has always been about overcoming the odds. My fear now drives me to prove it wrong. My fear is not reality. Reality is what I perceive it to be. Change my perception and I change my reality. And so I choose to believe that I will come through this as I did when I was twenty...only better. I am more fit now than I was then, healthier and more determined. I have more yet to do in this lifetime and I have more to live for than I did then.
I don't feel fifty. I don't feel sick enough. And I don't believe that I will die. That is my reality.
Tuesday, December 29, 2009
Monday, December 28, 2009
Diary Entries of an Angst-Ridden 14 Year Old
July 1973
P. and I got a job at the arboretum for the summer. It was strictly volunteer work, so there was no money, but it was a lot of fun. We worked in the “Garden for All Seasons”, an experimental garden to get things to bloom all year long. It wasn’t especially hard work, pulling weeds, raking, hoeing and planting. But it was southern California in the summer which meant it was HOT! It was so hot, that I’d get tired real fast. We started out working at 9:30 in the morning, but because of the heat, Mrs. Ranselle told us to come at eight from then on.
Mostly, we would ride our bikes there and back, but occasionally P’s dad drove us to the arboretum, and then picked us up at 12:30 and brought us back home to P.’s for lunch. Afterward, we would go over to P.’s brother’s house to go swimming. Most days the smog was so bad it made my lungs burn. I could barely breathe riding my bike home. And when I got home, all I could do was go upstairs to my room and fall asleep until dinner.
The backs of my legs were still pretty stiff from getting sunburned at the beach the week before. We had to wear long pants and long sleeve shirts when we worked in the arboretum. Friday, when I got home, the backs of my legs had started to peel and my skin turned yellow from the brown pants I was wearing. That kind of freaked me out, so I told Mom.
“You should have gone to the doctor when I told you to!” she screamed, her face stricken with panic.
“Well can you call the doctor now?” I asked, sure that the dye from my pants was seeping into my bloodstream and would go straight to my brain and make me retarded.
“I’ll call later; I’m going to take a nap”. Apparently, having a brain-dyed retarded child was less important than napping at that moment. Sometimes, panic was a fleeting emotion, at best in my mother. Other times, it could go on for days. This was apparently not one of those times.
Two days later, when my legs were looking really scary, with brown and yellow and red pieces of skin hanging off the back of them, I asked Mom again if she could call the doctor.
“I don’t want to anymore” she said without even glancing at me. And before I could turn around, she was walking out the door, suitcase in hand.
“I’m going to Palm Springs with Fred” she called over her shoulder as she shut the door. Fred was the most recent boyfriend in a long line of men coming and going from her bedroom.
Fortunately, the dye never did make me retarded (at least I don't think!). But I read the dictionary and did crossword puzzles all week just to make sure.
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Cindy and I had the two bedrooms upstairs and shared the bathroom between our bedrooms. She would spend hours in the bathroom doing God only knows what with both doors locked. I would pound on the door to be let in so I could go to the bathroom, and she would just scream at me to go downstairs. Of course I could do that, but it was much more dramatic to pound on the door with both of us screaming at the top of our lungs.
One day I locked my self in my room accidentally. I was trying to fix the lock on my door so I could lock everyone else out, but instead the lock got stuck and I locked myself in. Of course, the bathroom door was locked, so I pounded on the door, yelling “Let me in”.
“I’m busy!” she screeched, as I heard her turn on the bath water.
I knew there was no way in hell she was going to open that door, no matter whether she was in the tub yet or not. So I climbed out my window onto the roof, and walked over to Cindy’s bedroom and climbed back in through her window. I walked out of her bedroom, to my bedroom, and lo and behold my door opened. Some locksmith I’d make!
On a wild hair, I walked back through Cindy’s bedroom to her bathroom door and as softly as I could I tried the handle. It was unlocked! As nonchalantly as I could I opened the door wide, glanced at her in the tub as I said hello in my most cheerful voice, went to my bathroom door, opened it as wide as I could, and promptly ran downstairs leaving both doors open. I could still hear her screaming as I tore down the block. If she caught me, I was a goner.
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It was July 4th and Greg and I were going to the Rose Bowl that night to watch the fireworks. Mom was still in Palm Springs with Fred. Jim called early in the morning to tell me he was thinking of buying a 3.5 acre estate with a two story Spanish house, trees all around, 4 stables for horses with trails all over for riding or walking. It sounded fantastic, and I immediately started imagining myself living there with him. I wondered if that could actually happen. Was that weird to wish I’d go live with my uncle? But I found myself wishing it all the time.
We asked Greg’s mom to come with us to watch the fireworks, and she did. We had to drop Carmen, our housekeeper, off at her girlfriend’s house, but couldn’t find the address, so we brought her back home and I called her a cab. As they shot off the fireworks, they showed a flaming Smokey the Bear on the field. As the crowd clapped, I was pretty sure the irony of Smokey the Bear going up in flames was lost on most. P. would have loved it. It was too late to call P. when I got home, and I had this really strange feeling all night. Perhaps it was because P. didn’t wish me “pleasant nightmares” like she usually does.
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P. called me today and wanted to ask my advice on something. I almost fainted. I never, ever remember her asking me for advice, only dispensing it. I always got the impression that P. thought I was just some lost waif that needed a guiding hand to be able to get through life. Looking back, I realized that I looked at P. as my salvation. I suppose it’s hard not to develop somewhat of a God complex under those circumstances.
When I heard what it was that she was asking however, I realized of course, that it wasn’t my advice she was wanting, but it was my reaction. Dave had called her and asked her to go out with him, for a drive in the mountains, or better yet, to his church and then back to his house. Dave was our handyman in school. Dave says P. is a temptation to him, yet he wants to take her out? She was asking what I thought and whether she should go or not. I couldn’t tell if she was pulling my leg, or this really happened. P. was, after all, the queen of hyperbole (a word my uncle made me learn when I was eight).
It freaked me out. I didn’t know what I would do if P. went out with Dave. He was 25, and she was only 14. He was a man for God sakes! And here I thought she was just starting to get over him. Of course, she could still be making this all up. Sometimes, I think I inherited the worrying gene from Nana.
Sometimes you’re luck just changes for no particular reason. Yesterday, Carmen found five dollars in my pants while doing laundry, Nana sent me five dollars to do with what I liked, and tonight Jim slipped me two bucks under the table at the restaurant. I’m rich!
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I woke up with a terrible cold and my head feeling like it was split open with a hatchet (I may have read one too many horror stories lately). I was supposed to go with Jim to see the estate, but I was out bowling when he called, so he said he’d take me someday next week. I loved bowling enough, that not even the hatchet in my head would deter me.
I woke up the next morning feeling a little better. I’m sure the bowling had something to do with it. Greg called and invited me to go to the swap meet with him. We spent the whole day together, and it was almost like old times. I knew it was never going to be the same between us, and I was okay with that. We had both changed so much, and it could never be like it used to be between us. But for this day, it was good.
P. is acting really weird lately. She asked me what I would do if she was pregnant. Hell, how am I supposed to know what I would do. I’d probably have that long-awaited heart attack right there on the spot. I felt kind of like I was being set up, but I didn’t know for what. Anyway, she said she was almost over Dave, but I doubted it.
Mom went back to Palm Springs tonight with Fred.
After working at the arboretum, I came home and Greg came over to hang out. After that K. came over and we hung out and listened to John Denver. When I go over to her house, she makes me listen to Joni Mitchell (K. loved Joni Mitchell, and I hated her!), so I made her listen to John Denver whenever I could. I figured it was only fair.
P. is really starting to worry me. She had let up on talking about Dave for a while there, but now she called him up again. She called me later and asked me to call Dave. I refused. I told her that under no circumstances would I call him; it absolutely would not happen in this lifetime. Of course, I ended up doing it anyway. I finally got hold of him at 11:00pm (where was he and what was he doing before that?). We talked for 2 hours. Mostly about religion, or rather he talked mostly about religion and I mostly listened. He was very religious, he said, and he was “fighting the good fight against temptation” every day. His philosophy was to deny the human “carnal” desires, because that life led you straight to hell. He was spiritually on a higher plane being the celibate person he was. I thought it was all a load of crap. I figured that if we could just get through the summer, once P. gets into high school, maybe she’d forget all about Dave (I hope, I hope, I hope).
P. called me at 8:00am this morning to find out what Dave said last night. I told her everything.
“You talked to him for 2 hours? I hate you!” she blurted out. I had no curfew or anyone monitoring my phone calls. She had much tighter restrictions on her comings and goings, and I had none.
But sometimes, I really didn’t understand her all. Seconds after telling me she hates me, she says, “As long as I have you as my friend during the four years in high school, I just may stop thinking I’m going to die at the age of nineteen!” she said. I decided right then and there that it was my job to keep her alive, at least until she was twenty! No pressure there.
Later in the day, P. and K. and I went bowling, then went back to my house to play password. Mom was still in Palm Springs with Fred so it was safe to have people over. P. and K. never really liked each other much. But P. was my best friend, and K. was my second best friend. And I think that they didn’t trust one another to be with me, without the other one present. So occasionally, we would all do things together. I always thought that I was lucky to have any friends, since I didn’t think I had good looks or a sparkling personality going for me. It never really occurred to me that it had anything to do with me, just that it was a competition between them.
P. and I got a job at the arboretum for the summer. It was strictly volunteer work, so there was no money, but it was a lot of fun. We worked in the “Garden for All Seasons”, an experimental garden to get things to bloom all year long. It wasn’t especially hard work, pulling weeds, raking, hoeing and planting. But it was southern California in the summer which meant it was HOT! It was so hot, that I’d get tired real fast. We started out working at 9:30 in the morning, but because of the heat, Mrs. Ranselle told us to come at eight from then on.
Mostly, we would ride our bikes there and back, but occasionally P’s dad drove us to the arboretum, and then picked us up at 12:30 and brought us back home to P.’s for lunch. Afterward, we would go over to P.’s brother’s house to go swimming. Most days the smog was so bad it made my lungs burn. I could barely breathe riding my bike home. And when I got home, all I could do was go upstairs to my room and fall asleep until dinner.
The backs of my legs were still pretty stiff from getting sunburned at the beach the week before. We had to wear long pants and long sleeve shirts when we worked in the arboretum. Friday, when I got home, the backs of my legs had started to peel and my skin turned yellow from the brown pants I was wearing. That kind of freaked me out, so I told Mom.
“You should have gone to the doctor when I told you to!” she screamed, her face stricken with panic.
“Well can you call the doctor now?” I asked, sure that the dye from my pants was seeping into my bloodstream and would go straight to my brain and make me retarded.
“I’ll call later; I’m going to take a nap”. Apparently, having a brain-dyed retarded child was less important than napping at that moment. Sometimes, panic was a fleeting emotion, at best in my mother. Other times, it could go on for days. This was apparently not one of those times.
Two days later, when my legs were looking really scary, with brown and yellow and red pieces of skin hanging off the back of them, I asked Mom again if she could call the doctor.
“I don’t want to anymore” she said without even glancing at me. And before I could turn around, she was walking out the door, suitcase in hand.
“I’m going to Palm Springs with Fred” she called over her shoulder as she shut the door. Fred was the most recent boyfriend in a long line of men coming and going from her bedroom.
Fortunately, the dye never did make me retarded (at least I don't think!). But I read the dictionary and did crossword puzzles all week just to make sure.
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Cindy and I had the two bedrooms upstairs and shared the bathroom between our bedrooms. She would spend hours in the bathroom doing God only knows what with both doors locked. I would pound on the door to be let in so I could go to the bathroom, and she would just scream at me to go downstairs. Of course I could do that, but it was much more dramatic to pound on the door with both of us screaming at the top of our lungs.
One day I locked my self in my room accidentally. I was trying to fix the lock on my door so I could lock everyone else out, but instead the lock got stuck and I locked myself in. Of course, the bathroom door was locked, so I pounded on the door, yelling “Let me in”.
“I’m busy!” she screeched, as I heard her turn on the bath water.
I knew there was no way in hell she was going to open that door, no matter whether she was in the tub yet or not. So I climbed out my window onto the roof, and walked over to Cindy’s bedroom and climbed back in through her window. I walked out of her bedroom, to my bedroom, and lo and behold my door opened. Some locksmith I’d make!
On a wild hair, I walked back through Cindy’s bedroom to her bathroom door and as softly as I could I tried the handle. It was unlocked! As nonchalantly as I could I opened the door wide, glanced at her in the tub as I said hello in my most cheerful voice, went to my bathroom door, opened it as wide as I could, and promptly ran downstairs leaving both doors open. I could still hear her screaming as I tore down the block. If she caught me, I was a goner.
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It was July 4th and Greg and I were going to the Rose Bowl that night to watch the fireworks. Mom was still in Palm Springs with Fred. Jim called early in the morning to tell me he was thinking of buying a 3.5 acre estate with a two story Spanish house, trees all around, 4 stables for horses with trails all over for riding or walking. It sounded fantastic, and I immediately started imagining myself living there with him. I wondered if that could actually happen. Was that weird to wish I’d go live with my uncle? But I found myself wishing it all the time.
We asked Greg’s mom to come with us to watch the fireworks, and she did. We had to drop Carmen, our housekeeper, off at her girlfriend’s house, but couldn’t find the address, so we brought her back home and I called her a cab. As they shot off the fireworks, they showed a flaming Smokey the Bear on the field. As the crowd clapped, I was pretty sure the irony of Smokey the Bear going up in flames was lost on most. P. would have loved it. It was too late to call P. when I got home, and I had this really strange feeling all night. Perhaps it was because P. didn’t wish me “pleasant nightmares” like she usually does.
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P. called me today and wanted to ask my advice on something. I almost fainted. I never, ever remember her asking me for advice, only dispensing it. I always got the impression that P. thought I was just some lost waif that needed a guiding hand to be able to get through life. Looking back, I realized that I looked at P. as my salvation. I suppose it’s hard not to develop somewhat of a God complex under those circumstances.
When I heard what it was that she was asking however, I realized of course, that it wasn’t my advice she was wanting, but it was my reaction. Dave had called her and asked her to go out with him, for a drive in the mountains, or better yet, to his church and then back to his house. Dave was our handyman in school. Dave says P. is a temptation to him, yet he wants to take her out? She was asking what I thought and whether she should go or not. I couldn’t tell if she was pulling my leg, or this really happened. P. was, after all, the queen of hyperbole (a word my uncle made me learn when I was eight).
It freaked me out. I didn’t know what I would do if P. went out with Dave. He was 25, and she was only 14. He was a man for God sakes! And here I thought she was just starting to get over him. Of course, she could still be making this all up. Sometimes, I think I inherited the worrying gene from Nana.
Sometimes you’re luck just changes for no particular reason. Yesterday, Carmen found five dollars in my pants while doing laundry, Nana sent me five dollars to do with what I liked, and tonight Jim slipped me two bucks under the table at the restaurant. I’m rich!
-------------------------------------------------
I woke up with a terrible cold and my head feeling like it was split open with a hatchet (I may have read one too many horror stories lately). I was supposed to go with Jim to see the estate, but I was out bowling when he called, so he said he’d take me someday next week. I loved bowling enough, that not even the hatchet in my head would deter me.
I woke up the next morning feeling a little better. I’m sure the bowling had something to do with it. Greg called and invited me to go to the swap meet with him. We spent the whole day together, and it was almost like old times. I knew it was never going to be the same between us, and I was okay with that. We had both changed so much, and it could never be like it used to be between us. But for this day, it was good.
P. is acting really weird lately. She asked me what I would do if she was pregnant. Hell, how am I supposed to know what I would do. I’d probably have that long-awaited heart attack right there on the spot. I felt kind of like I was being set up, but I didn’t know for what. Anyway, she said she was almost over Dave, but I doubted it.
Mom went back to Palm Springs tonight with Fred.
After working at the arboretum, I came home and Greg came over to hang out. After that K. came over and we hung out and listened to John Denver. When I go over to her house, she makes me listen to Joni Mitchell (K. loved Joni Mitchell, and I hated her!), so I made her listen to John Denver whenever I could. I figured it was only fair.
P. is really starting to worry me. She had let up on talking about Dave for a while there, but now she called him up again. She called me later and asked me to call Dave. I refused. I told her that under no circumstances would I call him; it absolutely would not happen in this lifetime. Of course, I ended up doing it anyway. I finally got hold of him at 11:00pm (where was he and what was he doing before that?). We talked for 2 hours. Mostly about religion, or rather he talked mostly about religion and I mostly listened. He was very religious, he said, and he was “fighting the good fight against temptation” every day. His philosophy was to deny the human “carnal” desires, because that life led you straight to hell. He was spiritually on a higher plane being the celibate person he was. I thought it was all a load of crap. I figured that if we could just get through the summer, once P. gets into high school, maybe she’d forget all about Dave (I hope, I hope, I hope).
P. called me at 8:00am this morning to find out what Dave said last night. I told her everything.
“You talked to him for 2 hours? I hate you!” she blurted out. I had no curfew or anyone monitoring my phone calls. She had much tighter restrictions on her comings and goings, and I had none.
But sometimes, I really didn’t understand her all. Seconds after telling me she hates me, she says, “As long as I have you as my friend during the four years in high school, I just may stop thinking I’m going to die at the age of nineteen!” she said. I decided right then and there that it was my job to keep her alive, at least until she was twenty! No pressure there.
Later in the day, P. and K. and I went bowling, then went back to my house to play password. Mom was still in Palm Springs with Fred so it was safe to have people over. P. and K. never really liked each other much. But P. was my best friend, and K. was my second best friend. And I think that they didn’t trust one another to be with me, without the other one present. So occasionally, we would all do things together. I always thought that I was lucky to have any friends, since I didn’t think I had good looks or a sparkling personality going for me. It never really occurred to me that it had anything to do with me, just that it was a competition between them.
Friday, November 20, 2009
The Aftermath
It felt like a truck ran over me. Not a little Datsun either; a big long haul, semi truck loaded up with lead bricks! They got me up to walk the day after surgery albeit VERY slowly. I started out the first couple of times with a nurse at my side; soon I was lapping the nurses station several times a day on my own.
I had a nurse in the ICU who was not much older than me. She told me that they don't get very many young people there after open heart surgery, so I was kind of special. She assured me she would take good care of me; she did and she felt like my guardian angel (yeah, yeah...I know I said I didn't believe in anything, but belief in God and belief in angels are completely different).
Because I was a somewhat "special" patient, they tended to bend the rules a bit for me. Visitation rules were only 2 visitors at a time, family only. At first they stuck to the two family members at a time rule. Then my friends from college came to visit. Maria, Joanne, Linda and of course Polly flew down from San Francisco to visit. My nurse came in, smiled and said "You're sisters are here to visit." Of course, NONE of them looked anything like me, but from that point on I had many sisters.
Three days after surgery, on Sunday, January 13, 1980 I turned 21 years old. The same young nurse who had been taking care of me was on duty that day and came in to tell me (with a smile and a wink) that my sisters were here to wish me a happy birthday. Maria, Joanne, Linda and Polly all walked in with a bottle of champagne for me (which I couldn't drink) and were on their way to a champagne brunch in my honor to celebrate my birthday (which I couldn't attend). They stayed long enough to make me laugh really hard (which really hurt) and then were off to celebrate.
Upon their return after brunch, I was moved out of the ICU to a regular room. Maria, Joanne, Linda and Polly came back from brunch in a VERY good mood, laughing at seemingly everything and proceeded to make me laugh until I almost cried from the pain. Everything they said seemed to be funny to them (happens when you drink that much champagne!) and I ended up laughing just as much. It was painful, but good medicine for me.
Later that morning they left for the airport to go back home. They were good for me and saying goodbye was really the first time during the whole ordeal I felt like crying. I didn't...because I NEVER cried in front of anyone back then, and anyway it would have hurt too much. It never ceased to amaze me that almost every little thing you do involves using your chest muscles in some way.
After that, my friend Dena was my most constant visitor. She came almost every day at least for a little while. I didn't have much of an appetite (considering the food...no big surprise. I was pretty much of a foodie even back then). One day while Dena was visiting, my surgeon came by to round on me. He was concerned that I wasn't eating. "If you are going to heal, you have to eat" he said. "Would you eat something if your friends brought you food you liked?"
"Yeah, I guess so" I remained unconvinced however. Nothing sounded appetizing. He pulled Dena aside and asked her to bring me whatever food I asked for, just as long as I ate it. I was thirsty all the time and fruit was the only thing I could think of that sounded even remotely appealing.
So the next day Dena brought a big basket of fruit; it had every kind of fruit imaginable. I picked out an orange because of the juice. It tasted great and I devoured it almost immediately. In hindsight, oranges may not have been the best thing to put in my empty stomach because of the acid. Within a short period of time I was in the bathroom throwing up. It felt like my chest was splitting back open it was so painful. After that, I pretty much shied away from any kind of food.
I was originally supposed to be in the hospital a total of 10 days. But by 5 days post surgery, they just didn't know what to do with me anymore. They had taken out my chest tubes and arterial lines and stitched up the incisions, intending to remove the stitches before I went home. I beat them to it and removed them on my own a few days later...they were itching. A nurse came in to take out my IV line, but got called away before she could remove it. Since she left her supplies at my bedside, I removed it for her. And since I was supposed to walk as much as possible, I began to stray farther and farther away from my nurses so that it became hard to track me down.
By hospital day 5, my surgeon came in early in the morning and asked me (rather begged me) if he let me go home, would I promise to eat? I assured him that I would (I would have sold my soul to get out of there!) and so early that afternoon, my dad came to pick me up and took me back to his house. He dropped me off at the front door, said he was going back to work but there were leftover tacos in the refrigerator if I was hungry. And he drove off. There I was just me and my suitcase standing on the front porch facing an empty house, alone again to face recovery. First thing I did was look for food. I realized at that moment I was ravenously hungry! I found the tacos, cold with congealed greasy hamburger meat and ate them without heating them. After the first taco went down, I ate the second without blinking and then a third. The only thing that stopped me from eating a fourth was the memory of the unfortunate post orange incident.
A week after my discharge I had a follow up appointment with my surgeon. He thought I was doing well and wanted to see me back in one month. I told him no, that wouldn't be possible, as I was going back up to college in the next few days. After he couldn't talk me out of it, he made me promise to find a cardiologist right away to be followed. I promised. As it turned out, Arcata and Eurkea, both small towns, didn't have any cardiologists. And so, I just didn't follow up with anyone.
A few weeks after surgery, Polly and Joanne were going cross country skiing. I wanted to go so badly it hurt (well not really but it ended up hurting a lot!). So I went a long with them for the ride up to Tahoe and sat in a cafe and watched them ski around a lake. After a while, Polly took pity on me and suggested that I stand behind her on her skis, hold on tight and she would ski me around a bit. Joanne thought this was a REALLY bad idea and said so over and over again.
Never ones to be dissuaded by little issues like safety, Polly and I went for it. Joanne stood by and covered her eyes while I got on the skis and Polly took off, gliding at first as best she could with an extra hundred pounds to tow. Joanne would look up every once in a while as we called out to her, but then would cover her eyes just sure that we would fall. And fall we did. Hard. So hard in fact that I felt a pop in my chest, and then another pop as the wires holding my sternum together broke open. I thought Joanne would have a stroke right then and there. Polly and I decided that that was enough fun for one day and we all piled back in the car to drive back to San Francisco. On the way home, I felt another pop in my chest. That left me with 3 out of 6 intact wires holding my sternum together. I thought maybe I should be a little more careful in the future. "Little" would turn out to be the key word, however.
After I got back up to college, I was too late to enroll in the Winter quarter. So I went back to work as a nurses aide at a very small 15 bed community hospital. I didn't have a doctor's release, and they didn't require one. A lot of the time, the doctors would pull me away to help with the really cool stuff in the emergency room, like suturing, nose bleeds, broken bones, etc. They knew I was interested in premed so they would let me do all kinds of things I wasn't qualified to do, like assist in emergency cesarean sections. That would never happen now, but back then, who was watching? Most of the time however, I was cleaning rooms and helping patients in and out of bed. Not the smartest move after open heart surgery, but I managed not to break any more sternal wires.
Polly and I had moved to a small town about one hour south of Humboldt State University. Polly got a job teaching there, and I wanted to be with Polly so we moved in together. The town was so small, that when I went in to open up a post office box, the post master already knew who I was. "So you're one of them women renting old man Parish's house, eh?" he said looking slightly askance at me.
"Yes" I said quite surprised since I hadn't even given him my name yet.
"You two related or something?" I knew where this was going. It was a VERY small town, in a fairly conservative area. We needed to fit in.
"Students" I said. "Can't afford a place on my own. You know how that is". Hoping that would pass, I got my post office box and hightailed it out of there before he could ask me too many more questions.
A few weeks later, I was driving home from Humboldt after registering for Spring quarter and I got a flat tire on the highway. I pulled over and started getting out my jack and tools to change the tire. I knew I wasn't supposed to change the tire, and I wasn't even sure I could change the tire. So I did the only smart thing I had done since surgery. I flagged down a man to help me. As he was placing the jack under my car I explained that I had just had open heart surgery and wasn't supposed to be lifting or pulling anything heavy.
"Open heart surgery?" he stood up fast and back away with a somewhat panicked look in his eyes. "I don't want to be involved in case anything happens. Listen lady, I don't know anything about medicine." And with that he ran to his car and took off. And so, despite my best intentions (my one and only good intention since surgery!) I changed the tire myself. It was a slow, painful process and it took me an hour and a half to accomplish it. But I did it. Nothing would stop me now. And I drove off to start the rest of my life. Fortunately for me, I got smarter as I got older, otherwise I might not have survived the next thirty years.
I had a nurse in the ICU who was not much older than me. She told me that they don't get very many young people there after open heart surgery, so I was kind of special. She assured me she would take good care of me; she did and she felt like my guardian angel (yeah, yeah...I know I said I didn't believe in anything, but belief in God and belief in angels are completely different).
Because I was a somewhat "special" patient, they tended to bend the rules a bit for me. Visitation rules were only 2 visitors at a time, family only. At first they stuck to the two family members at a time rule. Then my friends from college came to visit. Maria, Joanne, Linda and of course Polly flew down from San Francisco to visit. My nurse came in, smiled and said "You're sisters are here to visit." Of course, NONE of them looked anything like me, but from that point on I had many sisters.
Three days after surgery, on Sunday, January 13, 1980 I turned 21 years old. The same young nurse who had been taking care of me was on duty that day and came in to tell me (with a smile and a wink) that my sisters were here to wish me a happy birthday. Maria, Joanne, Linda and Polly all walked in with a bottle of champagne for me (which I couldn't drink) and were on their way to a champagne brunch in my honor to celebrate my birthday (which I couldn't attend). They stayed long enough to make me laugh really hard (which really hurt) and then were off to celebrate.
Upon their return after brunch, I was moved out of the ICU to a regular room. Maria, Joanne, Linda and Polly came back from brunch in a VERY good mood, laughing at seemingly everything and proceeded to make me laugh until I almost cried from the pain. Everything they said seemed to be funny to them (happens when you drink that much champagne!) and I ended up laughing just as much. It was painful, but good medicine for me.
Later that morning they left for the airport to go back home. They were good for me and saying goodbye was really the first time during the whole ordeal I felt like crying. I didn't...because I NEVER cried in front of anyone back then, and anyway it would have hurt too much. It never ceased to amaze me that almost every little thing you do involves using your chest muscles in some way.
After that, my friend Dena was my most constant visitor. She came almost every day at least for a little while. I didn't have much of an appetite (considering the food...no big surprise. I was pretty much of a foodie even back then). One day while Dena was visiting, my surgeon came by to round on me. He was concerned that I wasn't eating. "If you are going to heal, you have to eat" he said. "Would you eat something if your friends brought you food you liked?"
"Yeah, I guess so" I remained unconvinced however. Nothing sounded appetizing. He pulled Dena aside and asked her to bring me whatever food I asked for, just as long as I ate it. I was thirsty all the time and fruit was the only thing I could think of that sounded even remotely appealing.
So the next day Dena brought a big basket of fruit; it had every kind of fruit imaginable. I picked out an orange because of the juice. It tasted great and I devoured it almost immediately. In hindsight, oranges may not have been the best thing to put in my empty stomach because of the acid. Within a short period of time I was in the bathroom throwing up. It felt like my chest was splitting back open it was so painful. After that, I pretty much shied away from any kind of food.
I was originally supposed to be in the hospital a total of 10 days. But by 5 days post surgery, they just didn't know what to do with me anymore. They had taken out my chest tubes and arterial lines and stitched up the incisions, intending to remove the stitches before I went home. I beat them to it and removed them on my own a few days later...they were itching. A nurse came in to take out my IV line, but got called away before she could remove it. Since she left her supplies at my bedside, I removed it for her. And since I was supposed to walk as much as possible, I began to stray farther and farther away from my nurses so that it became hard to track me down.
By hospital day 5, my surgeon came in early in the morning and asked me (rather begged me) if he let me go home, would I promise to eat? I assured him that I would (I would have sold my soul to get out of there!) and so early that afternoon, my dad came to pick me up and took me back to his house. He dropped me off at the front door, said he was going back to work but there were leftover tacos in the refrigerator if I was hungry. And he drove off. There I was just me and my suitcase standing on the front porch facing an empty house, alone again to face recovery. First thing I did was look for food. I realized at that moment I was ravenously hungry! I found the tacos, cold with congealed greasy hamburger meat and ate them without heating them. After the first taco went down, I ate the second without blinking and then a third. The only thing that stopped me from eating a fourth was the memory of the unfortunate post orange incident.
A week after my discharge I had a follow up appointment with my surgeon. He thought I was doing well and wanted to see me back in one month. I told him no, that wouldn't be possible, as I was going back up to college in the next few days. After he couldn't talk me out of it, he made me promise to find a cardiologist right away to be followed. I promised. As it turned out, Arcata and Eurkea, both small towns, didn't have any cardiologists. And so, I just didn't follow up with anyone.
A few weeks after surgery, Polly and Joanne were going cross country skiing. I wanted to go so badly it hurt (well not really but it ended up hurting a lot!). So I went a long with them for the ride up to Tahoe and sat in a cafe and watched them ski around a lake. After a while, Polly took pity on me and suggested that I stand behind her on her skis, hold on tight and she would ski me around a bit. Joanne thought this was a REALLY bad idea and said so over and over again.
Never ones to be dissuaded by little issues like safety, Polly and I went for it. Joanne stood by and covered her eyes while I got on the skis and Polly took off, gliding at first as best she could with an extra hundred pounds to tow. Joanne would look up every once in a while as we called out to her, but then would cover her eyes just sure that we would fall. And fall we did. Hard. So hard in fact that I felt a pop in my chest, and then another pop as the wires holding my sternum together broke open. I thought Joanne would have a stroke right then and there. Polly and I decided that that was enough fun for one day and we all piled back in the car to drive back to San Francisco. On the way home, I felt another pop in my chest. That left me with 3 out of 6 intact wires holding my sternum together. I thought maybe I should be a little more careful in the future. "Little" would turn out to be the key word, however.
After I got back up to college, I was too late to enroll in the Winter quarter. So I went back to work as a nurses aide at a very small 15 bed community hospital. I didn't have a doctor's release, and they didn't require one. A lot of the time, the doctors would pull me away to help with the really cool stuff in the emergency room, like suturing, nose bleeds, broken bones, etc. They knew I was interested in premed so they would let me do all kinds of things I wasn't qualified to do, like assist in emergency cesarean sections. That would never happen now, but back then, who was watching? Most of the time however, I was cleaning rooms and helping patients in and out of bed. Not the smartest move after open heart surgery, but I managed not to break any more sternal wires.
Polly and I had moved to a small town about one hour south of Humboldt State University. Polly got a job teaching there, and I wanted to be with Polly so we moved in together. The town was so small, that when I went in to open up a post office box, the post master already knew who I was. "So you're one of them women renting old man Parish's house, eh?" he said looking slightly askance at me.
"Yes" I said quite surprised since I hadn't even given him my name yet.
"You two related or something?" I knew where this was going. It was a VERY small town, in a fairly conservative area. We needed to fit in.
"Students" I said. "Can't afford a place on my own. You know how that is". Hoping that would pass, I got my post office box and hightailed it out of there before he could ask me too many more questions.
A few weeks later, I was driving home from Humboldt after registering for Spring quarter and I got a flat tire on the highway. I pulled over and started getting out my jack and tools to change the tire. I knew I wasn't supposed to change the tire, and I wasn't even sure I could change the tire. So I did the only smart thing I had done since surgery. I flagged down a man to help me. As he was placing the jack under my car I explained that I had just had open heart surgery and wasn't supposed to be lifting or pulling anything heavy.
"Open heart surgery?" he stood up fast and back away with a somewhat panicked look in his eyes. "I don't want to be involved in case anything happens. Listen lady, I don't know anything about medicine." And with that he ran to his car and took off. And so, despite my best intentions (my one and only good intention since surgery!) I changed the tire myself. It was a slow, painful process and it took me an hour and a half to accomplish it. But I did it. Nothing would stop me now. And I drove off to start the rest of my life. Fortunately for me, I got smarter as I got older, otherwise I might not have survived the next thirty years.
Waking Up
Somebody is ripping my chest apart. They have their finger interlaced between my ribs and are pulling as hard as they can. It felt like an 800 pound gorilla had hold of me. I can't see them but I'm sure they are trying to kill me. No wait, I'm in surgery. They must be wiring my chest back together, but I'm waking up and they don't know it! I need to tell them but I can't seem to open my eyes. Why can't I get my eyes open? I try to speak but nothing comes out. I try to move my arms so they will know I am awake but they don't move either. In the haze of anesthesia I don't remember that my eyes are taped shut, I am intubated and my arms are tied down to the table. The pain in my chest is excruciating, and I panic because I am pretty sure I will either pass out or die here on the table from the pain before I can tell them I am awake. I hear "She's waking up" and then nothing.
I open my eyes. It's bright and I am being wheeled along a corridor. I see Nana with her hand over her mouth looking at me, wiping her eyes. Jim is now suddenly there, like in a dream walking along side me. "I'm going to pick up Polly from the airport. Do you want me to bring her here tonight?" he asked. Tears again in his eyes.
I try to answer, but again nothing comes out. Somewhere out of my view someone tells me not to talk, "You are still intubated". Still not quite comprehending, I try with all my might to speak but gag instead. Hands now on my shoulders holding me down. "We need to get her extubated". Jim tells me he will bring Polly with him, and he is gone in a flash. I close my eyes.
Lights are still bright but not as many people around. I am in some kind of room. My father, Cindy and Teresa in my view for seconds, maybe minutes. Teresa and Cindy kiss me again, this time on the forehead. Nana holds my hand. She squeezes hard, like she holding me back from being sucked into a tornado. Not there all at the same time though. Disjointed in my memory.
When my eyes open again it is dark in the room, night I think. I know time has gone by, but I missed it somehow. I am no longer intubated. My throat is sore and I am so thirsty. A nurse comes to check on me. She gives me water and I close my eyes.
The next time I open my eyes, I am alone and it is still dark. I understand now that I am in the intensive care unit. I look out into the nurses station, and it is dark there too. It must be late. I can see the clock on the wall and it is midnight. Suddenly it seemed, Jim was at my side again, kissing me. He charmed the nurses into letting him in the ICU against all the visitation rules. Jim could charm his way into anything. "Look who I brought" he says with a thick voice.
And there was Polly. She bends over and kisses me on the lips long and slow. "You sure are a sight for sore eyes" she says her voice breaking. And she kisses me again, this time harder. It was the first time Polly had ever kissed me in front of anyone else.
Just before surgery she went through the whole "I can't do this; we can't be lovers" breakup thing again with me for about the fourth time in our then 2 year relationship. Only right then, at that moment it felt like we were lovers. I was in love with her and desperately wanted for her to be in love with me. The kiss felt good. Like she meant it. She leaned over and whispered in my ear "I love you" and she was crying. I wanted to believe that she loved me because I was me, not because she was afraid for me. And so I did. It was one of the many miscalculations I would make in my life. But at that moment she was there for me. And that's what counted.
I open my eyes. It's bright and I am being wheeled along a corridor. I see Nana with her hand over her mouth looking at me, wiping her eyes. Jim is now suddenly there, like in a dream walking along side me. "I'm going to pick up Polly from the airport. Do you want me to bring her here tonight?" he asked. Tears again in his eyes.
I try to answer, but again nothing comes out. Somewhere out of my view someone tells me not to talk, "You are still intubated". Still not quite comprehending, I try with all my might to speak but gag instead. Hands now on my shoulders holding me down. "We need to get her extubated". Jim tells me he will bring Polly with him, and he is gone in a flash. I close my eyes.
Lights are still bright but not as many people around. I am in some kind of room. My father, Cindy and Teresa in my view for seconds, maybe minutes. Teresa and Cindy kiss me again, this time on the forehead. Nana holds my hand. She squeezes hard, like she holding me back from being sucked into a tornado. Not there all at the same time though. Disjointed in my memory.
When my eyes open again it is dark in the room, night I think. I know time has gone by, but I missed it somehow. I am no longer intubated. My throat is sore and I am so thirsty. A nurse comes to check on me. She gives me water and I close my eyes.
The next time I open my eyes, I am alone and it is still dark. I understand now that I am in the intensive care unit. I look out into the nurses station, and it is dark there too. It must be late. I can see the clock on the wall and it is midnight. Suddenly it seemed, Jim was at my side again, kissing me. He charmed the nurses into letting him in the ICU against all the visitation rules. Jim could charm his way into anything. "Look who I brought" he says with a thick voice.
And there was Polly. She bends over and kisses me on the lips long and slow. "You sure are a sight for sore eyes" she says her voice breaking. And she kisses me again, this time harder. It was the first time Polly had ever kissed me in front of anyone else.
Just before surgery she went through the whole "I can't do this; we can't be lovers" breakup thing again with me for about the fourth time in our then 2 year relationship. Only right then, at that moment it felt like we were lovers. I was in love with her and desperately wanted for her to be in love with me. The kiss felt good. Like she meant it. She leaned over and whispered in my ear "I love you" and she was crying. I wanted to believe that she loved me because I was me, not because she was afraid for me. And so I did. It was one of the many miscalculations I would make in my life. But at that moment she was there for me. And that's what counted.
Tuesday, November 3, 2009
Second Time Around...Part 2
Two days before surgery, my father drove me down to White Memorial Hospital to be admitted. Back then, you were admitted days before the actual surgery to run tests and generally prepare you for surgery; honestly I think they just wanted to make sure you didn't jump ship, which, as it turns out was a valid concern in my case.
White Memorial hospital was a resident teaching hospital in Los Angeles, founded and run by Seventh Day Adventists. On the admission paperwork, there was a religion section with little boxes to check to label your religion. There was no box labeled "none" so I left it blank. My father filled out the section under insurance, since I was still covered under Crippled Children's Foundation. I finished the paperwork and handed it back across the desk to the admissions clerk, who looked it over and promptly handed it back to me.
"You left a section blank. You need to complete all sections." Very brusque, nothing getting past this woman.
"Yes but I don't have a religion and there is no box for "none" I replied.
"Don't be silly. Everyone has a religion. What were you raised as?" She was getting this form completed no matter what.
"Just put down Catholic" my father replied very matter of fact. And that was that. I was Catholic for the next week whether I wanted to be or not.
Paperwork done, they brought me to my room, a private room with a view of Los Angeles. There I was, suitcase in hand with my father looking very uncomfortable.
"Do you need anything to get settled?" He was at least making an effort, I thought. Just then a nurse came in and told me to put on the gown and get into bed.
"Well I'm going to go back to work. I'll see you later". And he was off.
"I'm good" I said softly to his back as he walked out. I was anything but good, but I didn't want anyone else to know that. I was 20 years old, trapped in a hospital with a religion I didn't want, undergoing surgery I wasn't sure I was sick enough to need and no one around to make it all better.
Always one to at least "try" to follow the rules, no sooner had I changed into the gown and got settled into bed than a group of residents came by on their daily rounds. As soon as one of them listened to my heart, all them them were suddenly crowded around me talking about murmurs and thrills. A murmur is the sound that blood makes when it goes through either a leaking valve or a valve that is too narrow. My aortic valve was so narrow that it made a "thrill", which is a vibration you can feel by placing your hand over the heart. Since I'd never felt anyone else's heart before, it never occurred to me that no one else had that same vibration.
The residents questioned me extensively about my symptoms. They couldn't believe that I didn't have dyspnea (difficulty breathing), dizziness or chest pain. They were stunned when I told them that I went hiking, backpacking and mountain climbing on a regular basis, without symptoms.
As soon as they left I got down on the ground and did 50 push ups. Just to prove that I could. Of course, no one else was around to see me, but at least I felt better knowing that I could. I wasn't THAT sick!
Word travels fast in a teaching hospital about patients with good physical exam findings. Pretty soon I was "the patient" to see. Groups of residents and medical students (not even on my case) came tromping through my room at all hours just to listen to my heart.
Later that morning, a priest stopped by my room and asked if I was needing confession before my upcoming surgery. Thanking him politely, I said "No, I don't really have anything to confess, but I'll call you if I need anything", not intending to call at all but just wanting to get him the hell out of my room.
"If you don't confess before surgery, and God forbid you should die during surgery, you would not be welcomed into Heaven. Is that really what you want? I am here for you now and ready to take your confession". He wasn't going away that easily.
"Look, I'm not really Catholic. That was just something my Dad filled in because I was raised Catholic. There wasn't a box for "none". You guys should really fix that on the admission forms." I was tired now and really wanted him gone. Plus he was starting to freak me out a little, and my nerves were already a little on edge.
"We try to help everyone find their way back to God before they meet their maker. Won't you let me help you. If you like we can wait for your parents to come back if that would make you more comfortable." Oh boy, does he not know me!
Politeness now cast aside, I said "No, look, I'm not lost, I don't want your help, and if I die, well, I'll be dead so it won't really matter. And no, I don't need my parents here, I'm old enough and capable enough to make decisions about religion or no religion. So really, I'm done now." He turned his eyes downward and muttered that he would pray for my eternal soul and he backed out of the room.
Shortly after, lunch came. I didn't order it, but apparently they had me on a cardiac diet...no fat, no salt, no flavor, and worst of all no caffeine (at the time, I was a self avowed caffeine addict)! Because this was a Seventh Day Adventist hospital, they were also vegetarians, which at any other point in my life would have been great. However, their version of vegetarianism included a "mystery meat" with every meal meant to look and taste like meatloaf, which it failed miserably on both accounts. The other vegetables were overcooked and bland, with whipped potatoes out of a box. I thought to myself that if I died and went to hell, it surely couldn't be much worse than here.
By the next day, I was going a little stir crazy. I got up and asked the nurse if I could get dressed in street clothes since they had already taken all the blood, done all the xrays and EKG and I was now just waiting for surgery the next morning (which is exactly why insurance companies won't pay for admission before the day of surgery anymore!). She thought that would be fine, so I dressed in my jeans, sweat shirt and tennis shoes and went for a walk. At first, I just stayed on the floor. But as the day wore on, and my nerves were screaming for caffeine, so I did what I always did when I needed someone, I called Jim.
"When am I going to see you?" I asked.
"I can come over now if you need me too" He answered.
"Okay, meet me in the cafeteria!". I hung up and I jumped bail.
The only other person I knew who drank more coffee than me was Jim. I don't know how long we spent in the cafeteria drinking coffee and talking, but I know it was more than a couple of hours. Finally, a woman from Housekeeping came over to our table, looked me over closely, and said to me "You're the patient on fifth floor, yes?".
Caught. But since she wasn't a nurse, I figured I was okay for the time being. "yes, I am."
"Oh no, you need to go back. They been looking everywhere for you! They have doctors up there looking for you. They thought you left!"
As soon as she walked away, Jim and I just looked at each other and burst out laughing. Never one to coddle or baby me, Jim left me to go back to the floor and face the music on my own.
That afternoon, my father brought Nana to visit. While they were in the room, my surgeon and anesthesiologist came in to consent me for surgery. Because they weren't sure if they would repair the valve or replace it, I had to consent for both. I absolutely did not want anything foreign in my body, but, since bio prosthetic valves (pig valves) only last about 10-15 years, and as young as I was, if I needed a valve it would have to be a mechanical one. Funny how, I was so adamant against an artificial valve, yet I was so taken with the idea of celebrating my 21st by drinking myself into a stupor that I almost didn't get the surgery. As logical as I was even then, I'll have to chalk that one up to the sheer stupidity of youth.
As they started to list all the potential complications, I could see out of the corner of my eye Nana set her mouth and wring her hands, never a good sign. My father finally asked the question that no one wanted Nana to hear "What are the chances that she'll die during surgery?"
"Three to five percent" the surgeon said, "meaning that for every 100 surgeries we do, about 3-5 people will die as a result of complications."
"Oh my God" Nana gasped and started crying. My father, now very uncomfortable, just mumbled something about needing the surgery and I lived longer than anybody thought I would anyway, and then crossed his arms waiting for me to sign. I did just so we could end the ordeal for Nana.
As soon as that was done, a nurse came in to prepare me for surgery. Dad took Nana home, while I had to take a long shower with antibacterial soap. When I got out of the shower, the nurse was waiting for me with razor in hand, and shaved me from neck to toe! The worst part was she dry shaved me with baby powder. By the time she was done the entire front half of me was lobster red.
The night before surgery, I got to thinking. What was I doing here about to undergo a surgery that could kill me, when I wasn't sick? I could hike, bike, climb mountains...was I crazy to have this surgery now? Shouldn't I wait until there were at least some signs that something was wrong?
So I called my best friend Maria and told her I was thinking of leaving and not having surgery. I could go back up to school, finish out the semester and "just see how it goes".
"Wait, wait Tina, don't do anything yet. Do you want me to come down right now?" Maria said sounding slightly panicked.
No, I just don't think I want to do this right now". Having said that, the phone line cut off. Apparently, they shut the phone lines off at 9:00 pm when visiting hours are over. Poor Maria. When she called back she got connected to the nurses station, and was told visiting hours were over. She pleaded with them to check my room because I probably sneaking out the back stairs on the lam. She finally convinced the nurse to put the call through to my room, where I promptly picked up.
"Don't EVER do that to me again!"
"I'm sorry. I'm still here, I just don't want to be" I said. She was just the person I needed to talk to at that time.
The next morning, my father came back with Nana, Teresa, Cindy and Mark. Cindy and Teresa both leaned over to give me a kiss for luck. My father told Mark to "kiss your sister". He bent down to place a cold kiss on my cheek, but with nothing behind those eyes, which had been empty ever since my mother died. Then they left to wait in the waiting room. Jim came also. He told me that he just couldn't stay. He HATED hospitals. But he would be back, he promised. He had tears in his eyes. It was only the second time I could ever remember Jim with tears. The first time was just after my mother died.
The nurse came in to give me a preop shot of Demerol "just to relax you" she said. Apparently, Demerol has the opposite effect on me because in a few minutes it felt like I was on speed. Just as they came to wheel me out to the operating room, one of the housekeeping staff came to and asked me if I wanted her to pray with me. With a slight edge in my voice I thanked her but said no. This visibly upset her and she started praying in Spanish as they wheeled me out of my room. The last thing I thought as they wheeled me out was that next time I ever found myself in a hospital, I was sticking to my guns and leaving the religion box blank! Not because I didn't believe in the power of prayer. I did. In fact there are lots of studies that show that people who pray do better after surgery. It was the idea that only good people who pray get their prayers answered. What about all the people who prayers go unanswered? Were they not deserving enough? And what did that say about us as a society that we collectively believed in a God so elitist as to pick and chose whose prayers are answered and whose are ignored. Since I couldn't resolve any of those issues at the ripe old age of 20, I decided to believe in nothing, or at least be okay with not knowing what I believed.
The operating room was too cold and way too bright. There were lots of people bustling about getting the trays prepped, the bypass machine ready and generally ignoring me once i was shifted over on the operating table. Never wanting to be left out of the action, I sat up, and in as commanding a voice as I could muster(which was definitely a challenge considering I was a practically naked five foot tall woman who looked all of about 12 years old) I said "Okay, listen up. How many of you guys stayed out late last night drinking? How many hours of sleep did you get? How about you?" I said pointing to various people in the room. They all assured me that they each got a good nights sleep...sober as they chuckled behind their masks. The anesthesiologist came in and I questioned him also about his drinking habits. He laughed and told me to lay down and count backwards from one hundred. I started at 100, and went from 90 to nothing in the blink of an eye.
White Memorial hospital was a resident teaching hospital in Los Angeles, founded and run by Seventh Day Adventists. On the admission paperwork, there was a religion section with little boxes to check to label your religion. There was no box labeled "none" so I left it blank. My father filled out the section under insurance, since I was still covered under Crippled Children's Foundation. I finished the paperwork and handed it back across the desk to the admissions clerk, who looked it over and promptly handed it back to me.
"You left a section blank. You need to complete all sections." Very brusque, nothing getting past this woman.
"Yes but I don't have a religion and there is no box for "none" I replied.
"Don't be silly. Everyone has a religion. What were you raised as?" She was getting this form completed no matter what.
"Just put down Catholic" my father replied very matter of fact. And that was that. I was Catholic for the next week whether I wanted to be or not.
Paperwork done, they brought me to my room, a private room with a view of Los Angeles. There I was, suitcase in hand with my father looking very uncomfortable.
"Do you need anything to get settled?" He was at least making an effort, I thought. Just then a nurse came in and told me to put on the gown and get into bed.
"Well I'm going to go back to work. I'll see you later". And he was off.
"I'm good" I said softly to his back as he walked out. I was anything but good, but I didn't want anyone else to know that. I was 20 years old, trapped in a hospital with a religion I didn't want, undergoing surgery I wasn't sure I was sick enough to need and no one around to make it all better.
Always one to at least "try" to follow the rules, no sooner had I changed into the gown and got settled into bed than a group of residents came by on their daily rounds. As soon as one of them listened to my heart, all them them were suddenly crowded around me talking about murmurs and thrills. A murmur is the sound that blood makes when it goes through either a leaking valve or a valve that is too narrow. My aortic valve was so narrow that it made a "thrill", which is a vibration you can feel by placing your hand over the heart. Since I'd never felt anyone else's heart before, it never occurred to me that no one else had that same vibration.
The residents questioned me extensively about my symptoms. They couldn't believe that I didn't have dyspnea (difficulty breathing), dizziness or chest pain. They were stunned when I told them that I went hiking, backpacking and mountain climbing on a regular basis, without symptoms.
As soon as they left I got down on the ground and did 50 push ups. Just to prove that I could. Of course, no one else was around to see me, but at least I felt better knowing that I could. I wasn't THAT sick!
Word travels fast in a teaching hospital about patients with good physical exam findings. Pretty soon I was "the patient" to see. Groups of residents and medical students (not even on my case) came tromping through my room at all hours just to listen to my heart.
Later that morning, a priest stopped by my room and asked if I was needing confession before my upcoming surgery. Thanking him politely, I said "No, I don't really have anything to confess, but I'll call you if I need anything", not intending to call at all but just wanting to get him the hell out of my room.
"If you don't confess before surgery, and God forbid you should die during surgery, you would not be welcomed into Heaven. Is that really what you want? I am here for you now and ready to take your confession". He wasn't going away that easily.
"Look, I'm not really Catholic. That was just something my Dad filled in because I was raised Catholic. There wasn't a box for "none". You guys should really fix that on the admission forms." I was tired now and really wanted him gone. Plus he was starting to freak me out a little, and my nerves were already a little on edge.
"We try to help everyone find their way back to God before they meet their maker. Won't you let me help you. If you like we can wait for your parents to come back if that would make you more comfortable." Oh boy, does he not know me!
Politeness now cast aside, I said "No, look, I'm not lost, I don't want your help, and if I die, well, I'll be dead so it won't really matter. And no, I don't need my parents here, I'm old enough and capable enough to make decisions about religion or no religion. So really, I'm done now." He turned his eyes downward and muttered that he would pray for my eternal soul and he backed out of the room.
Shortly after, lunch came. I didn't order it, but apparently they had me on a cardiac diet...no fat, no salt, no flavor, and worst of all no caffeine (at the time, I was a self avowed caffeine addict)! Because this was a Seventh Day Adventist hospital, they were also vegetarians, which at any other point in my life would have been great. However, their version of vegetarianism included a "mystery meat" with every meal meant to look and taste like meatloaf, which it failed miserably on both accounts. The other vegetables were overcooked and bland, with whipped potatoes out of a box. I thought to myself that if I died and went to hell, it surely couldn't be much worse than here.
By the next day, I was going a little stir crazy. I got up and asked the nurse if I could get dressed in street clothes since they had already taken all the blood, done all the xrays and EKG and I was now just waiting for surgery the next morning (which is exactly why insurance companies won't pay for admission before the day of surgery anymore!). She thought that would be fine, so I dressed in my jeans, sweat shirt and tennis shoes and went for a walk. At first, I just stayed on the floor. But as the day wore on, and my nerves were screaming for caffeine, so I did what I always did when I needed someone, I called Jim.
"When am I going to see you?" I asked.
"I can come over now if you need me too" He answered.
"Okay, meet me in the cafeteria!". I hung up and I jumped bail.
The only other person I knew who drank more coffee than me was Jim. I don't know how long we spent in the cafeteria drinking coffee and talking, but I know it was more than a couple of hours. Finally, a woman from Housekeeping came over to our table, looked me over closely, and said to me "You're the patient on fifth floor, yes?".
Caught. But since she wasn't a nurse, I figured I was okay for the time being. "yes, I am."
"Oh no, you need to go back. They been looking everywhere for you! They have doctors up there looking for you. They thought you left!"
As soon as she walked away, Jim and I just looked at each other and burst out laughing. Never one to coddle or baby me, Jim left me to go back to the floor and face the music on my own.
That afternoon, my father brought Nana to visit. While they were in the room, my surgeon and anesthesiologist came in to consent me for surgery. Because they weren't sure if they would repair the valve or replace it, I had to consent for both. I absolutely did not want anything foreign in my body, but, since bio prosthetic valves (pig valves) only last about 10-15 years, and as young as I was, if I needed a valve it would have to be a mechanical one. Funny how, I was so adamant against an artificial valve, yet I was so taken with the idea of celebrating my 21st by drinking myself into a stupor that I almost didn't get the surgery. As logical as I was even then, I'll have to chalk that one up to the sheer stupidity of youth.
As they started to list all the potential complications, I could see out of the corner of my eye Nana set her mouth and wring her hands, never a good sign. My father finally asked the question that no one wanted Nana to hear "What are the chances that she'll die during surgery?"
"Three to five percent" the surgeon said, "meaning that for every 100 surgeries we do, about 3-5 people will die as a result of complications."
"Oh my God" Nana gasped and started crying. My father, now very uncomfortable, just mumbled something about needing the surgery and I lived longer than anybody thought I would anyway, and then crossed his arms waiting for me to sign. I did just so we could end the ordeal for Nana.
As soon as that was done, a nurse came in to prepare me for surgery. Dad took Nana home, while I had to take a long shower with antibacterial soap. When I got out of the shower, the nurse was waiting for me with razor in hand, and shaved me from neck to toe! The worst part was she dry shaved me with baby powder. By the time she was done the entire front half of me was lobster red.
The night before surgery, I got to thinking. What was I doing here about to undergo a surgery that could kill me, when I wasn't sick? I could hike, bike, climb mountains...was I crazy to have this surgery now? Shouldn't I wait until there were at least some signs that something was wrong?
So I called my best friend Maria and told her I was thinking of leaving and not having surgery. I could go back up to school, finish out the semester and "just see how it goes".
"Wait, wait Tina, don't do anything yet. Do you want me to come down right now?" Maria said sounding slightly panicked.
No, I just don't think I want to do this right now". Having said that, the phone line cut off. Apparently, they shut the phone lines off at 9:00 pm when visiting hours are over. Poor Maria. When she called back she got connected to the nurses station, and was told visiting hours were over. She pleaded with them to check my room because I probably sneaking out the back stairs on the lam. She finally convinced the nurse to put the call through to my room, where I promptly picked up.
"Don't EVER do that to me again!"
"I'm sorry. I'm still here, I just don't want to be" I said. She was just the person I needed to talk to at that time.
The next morning, my father came back with Nana, Teresa, Cindy and Mark. Cindy and Teresa both leaned over to give me a kiss for luck. My father told Mark to "kiss your sister". He bent down to place a cold kiss on my cheek, but with nothing behind those eyes, which had been empty ever since my mother died. Then they left to wait in the waiting room. Jim came also. He told me that he just couldn't stay. He HATED hospitals. But he would be back, he promised. He had tears in his eyes. It was only the second time I could ever remember Jim with tears. The first time was just after my mother died.
The nurse came in to give me a preop shot of Demerol "just to relax you" she said. Apparently, Demerol has the opposite effect on me because in a few minutes it felt like I was on speed. Just as they came to wheel me out to the operating room, one of the housekeeping staff came to and asked me if I wanted her to pray with me. With a slight edge in my voice I thanked her but said no. This visibly upset her and she started praying in Spanish as they wheeled me out of my room. The last thing I thought as they wheeled me out was that next time I ever found myself in a hospital, I was sticking to my guns and leaving the religion box blank! Not because I didn't believe in the power of prayer. I did. In fact there are lots of studies that show that people who pray do better after surgery. It was the idea that only good people who pray get their prayers answered. What about all the people who prayers go unanswered? Were they not deserving enough? And what did that say about us as a society that we collectively believed in a God so elitist as to pick and chose whose prayers are answered and whose are ignored. Since I couldn't resolve any of those issues at the ripe old age of 20, I decided to believe in nothing, or at least be okay with not knowing what I believed.
The operating room was too cold and way too bright. There were lots of people bustling about getting the trays prepped, the bypass machine ready and generally ignoring me once i was shifted over on the operating table. Never wanting to be left out of the action, I sat up, and in as commanding a voice as I could muster(which was definitely a challenge considering I was a practically naked five foot tall woman who looked all of about 12 years old) I said "Okay, listen up. How many of you guys stayed out late last night drinking? How many hours of sleep did you get? How about you?" I said pointing to various people in the room. They all assured me that they each got a good nights sleep...sober as they chuckled behind their masks. The anesthesiologist came in and I questioned him also about his drinking habits. He laughed and told me to lay down and count backwards from one hundred. I started at 100, and went from 90 to nothing in the blink of an eye.
Sunday, November 1, 2009
Second time around...(Part 1)
It was December 1979, I was 20 years old and a junior in College. I had driven down to Southern California to stay with my father for the Christmas Holiday. Mostly I went back to visit old friends from elementary and high school who hadn't moved away and old teachers. Yes I was just that nerdy enough to still visit past teachers. My teachers were my surrogate parents and so I often times would visit them either during their school day, or in some cases at their homes.
My father never really knew what to talk with me about. He would ask a few stock questions..."How is your car" (A guy question, I know), "How often do you get your haircut" (I have no idea why he wanted to know this), "Are you dating anyone (fodder for another blog), and "How is your heart these days". Up until then I had been able to get away with the following answers..."Runs great", "Whenever I have enough money", "I'm too busy studying" and "No problems". After that, he ran out of questions, and I ran out the door to visit friends.
That year however, he had more questions. "How long has it been since you've seen Dr. Johnson?" he asked. Well, truth be told, I couldn't remember the last time I saw my pediatric cardiologist. As I thought about it I realized that one of the last times had been back when I was about 11 years old. That experience was just traumatic enough to stick in my memory.
At each doctor's visit throughout my childhood, I would lie on the exam table in just my underwear and Dr. Johnson would listen to my heart as he rolled me all over into different positions. Then he would stand me up and have me jump up and down for what seemed like an hour (but I'm sure was only about 3-5 minutes) and listen again. After all that he would do an EKG, send me out to the waiting room to read the latest issue of Highlights magazine, while he talked to my mother and Nana; Nana almost always came with us, until I was 8 years old and she moved down to Oceanside. After that it was just my mother who took me. But no one ever talked to me.
At this particular visit, I was lying on the exam table after I had done the Mexican jumping bean imitation, getting ready to have the EKG, when Dr. Johnson's nurse Alberta (who had known me since birth) suddenly blurted out, "Well look, she's started her period!" at which point Alberta and my mother spent the next few minutes discussing my "womanhood", leaving me to wallow in my own complete and utter humiliation.
Shortly after that visit, my mother ran away and spent the next few years in and out of mental hospitals. My heart was farther down on the lists of family crises, so no one paid as much attention. I went a few times after that, but stopped going entirely sometime in high school. So by the time I was a junior in college, it had been at least 4 or more years since I'd seen a cardiologist. That Christmas in 1979, my father pushed it and asked, as a favor to him, if I would go see Dr. Johnson while I was in town. I agreed, mostly so we could stop talking about it.
On this visit however, as soon as he listened to me the first time, he sent me next door to get an echocardiogram, a new test I'd never had before. After that test, he scheduled me for an immediate cardiac catheterization. The last cardiac cath was done when I was about 8 years old. So I was pretty sure of what to expect. When they wheeled me into the surgery suite however, I had two big surprises in store for me...when you are an adult, they don't put you to sleep, and they go in through your groin, not your arm (which I didn't figure out until some woman came at me when a razor and a big bottle of betadine).
Looking back, it was a good thing that I was awake through the entire procedure. I might have otherwise made very different decisions about my future. The pressure gradient between my left ventricle (the chamber that pumps blood out to the rest of your body) and the aorta (the artery that carries blood out to the rest of your body) was 120 millimeters of mercury, when it should have been zero. And the opening between the two was about 90% blocked.
As soon as the cath was over, Dr. Johnson leaned over and said "Well, at least now we know what to do; we just have to find out how soon we can get you into surgery".
I was stunned. "What do you mean surgery? I'm not feeling bad! I backpack, I climb mountains, I don't need surgery!" My words were a bit pressured, even for me.
Dr. Johnson looked at me patiently with his eyes raised slightly, as if talking to someone who wasn't maybe the brightest crayon in the box. "If you don't have surgery NOW, you won't be able to backpack or climb mountains. You'll be dead in a year or so."
And so I did what any normal, highly intelligent, over-achieving, never say die college student would do. I told him and my father that I didn't have time for surgery, that maybe we could wait until sometime in summer, and promptly drove myself back up to San Francisco to spend the rest of my Christmas break with my on again/off again lover, Polly, and her family. A few days after Christmas, Polly, her mother and I were sitting around the kitchen table as I told them the story. Jeri's mother couldn't fathom why didn't I want to have surgery as soon as possible.
"In a few weeks I'll turn 21! I only get to turn 21 once in my whole life and I don't want to miss the opportunity to celebrate that!". As I said it, it sounded a little weak even to me.
Anyone who knows me at all, knows that if nothing else, I'm logical. With her eyebrows raised in that same expression my cardiologist used a few days before, Polly's mother said "Well dear, you'll still be 21 after the surgery. And don't you think you will have a much better time celebrating knowing that you'll someday turn 22?". Well she had me there.
Never one to procrastinate once I had made up my mind, the next day I called and scheduled the surgery for the first day they had open: January 10, 1980. Three days before my 21st birthday.
And the Weak Shall Inherit
My very first memory was of my parents crying. My father was holding my mother, who was crying. My crib was wheeled past them as they looked at me. The next thing I knew I was placed on a large, cold table with huge, bright lights overhead. I was holding a plastic squeeze baby and the room was filled with people. I was 18 months old and about to have my first open heart surgery.
I was born in 1959. This, as it turns out, was not any too soon. I was born with a congenital heart defect. In 1953, the heart-lung bypass machine was invented, and first used on a human. It was fraught with complications, but deemed safe for open heart surgery in 1960. Probably one of the few times in my life that timing was on my side.
At about the age of three, they discovered I had another murmur, and a second congenital heart defect. Back in those days, there were no echocardiograms, no state of the art equipment or procedures to give my parents a diagnosis. So all they knew was that I had some bad stuff going on in there and no way to treat it.
Having congenital heart disease shaped my entire future, from the way my family and outsiders viewed me to more importantly my own self perception. It meant that from my very first days of life, I was different. My family treated me like I was going to die at any moment, partly because that’s what the doctors were telling them. They were told that I was not expected to live beyond the age of five. I wasn’t to have any stress, no exposure to illnesses, no extreme temperatures, no high altitudes. My parents went to all kinds of lengths to keep me from crying, because they believed it would be too much strain on my heart. Fortunately, for them, I was pretty easy going and didn’t cry much anyway. As I grew older, however, this worked in my favor. No physical punishments. I remember watching my father discipline my older sister and brother, by whipping them with his belt, or a wire coat hanger across their backsides. Without having ever felt the sting of the belt, I knew then I would never do that to another human being.
When my sisters or brother got sick, I was shipped off to my grandparents so I wouldn’t fall ill. No measles or chicken pox for me! When I caught a cold, I was kept home from school. In the third grade I spent almost the entire year out of school, and had to have a home tutor to pass on to the fourth grade. When my family went on their family vacations to Lake Arrowhead, in the mountains of California, I was sent off to my grandparents. I did get to go to our family vacations in Palm Springs, but because of the heat, I had to stay inside almost all day while everyone else played in the pool, the desert or went off to the mountains.
I was always a little small for my age. I wasn’t allowed to jump rope, play hopscotch, run, skip or generally do the things kids used to do before there were computers and video games. I did have a bike, but my mother only allowed me to ride it in my driveway. My father argued with my mother for days to allow me to ride without training wheels. She was afraid that without training wheels, I would ride faster and have a heart attack. My mother was always telling me that if I did this, that or the other thing, I would have a heart attack. When I was young, I actually used to wonder whether today would be the day of that heart attack. As I got older however, I began to think my mother was perhaps prone to hyperbole.
I belonged to a group called Los Corozones for kids with congenital heart disease. Getting together every month or so, the mothers would commiserate, and the kids would talk about how it sucked to be us. None of them had had a heart attack however. And in talking with them, it became evident to me that none of their mothers even mentioned having a heart attack. So at some point my fears of having a heart attack faded. Until one day, my best friend in the group, Bobby, didn’t show up. When I asked my mom what happened she told me he’d had a heart attack and died. I was stunned. My heart felt like it was too big for my chest and I could barely breathe. My cardiologist, Dr. Johnson, and his wife and family always came to these outings. He came to talk to me and I asked about my friend Bobby. I asked how soon it would be before I had a heart attack like Bobby. Turns out Bobby never had a heart attack. He died of pneumonia. My preoccupation with heart attacks died that day, and my covert physical activities skyrocketed.
Recess at school was always a struggle for me. I was supposed to sit on the bench with my teacher, while my friends ran out on the playground to expend all that pent up energy. Occasionally, if I asked sounded sweet and looked just slightly pathetic, my teachers would reluctantly let me be the kicker in the kick ball game, or the thrower in dodge ball. I lived for the times that my teacher’s attention was diverted even for a moment, so I could run to first base. I was always a little slower, always just slightly out of breath. But I never let it show, and I would turn myself inside out to keep up.
When we were in 7th grade, P and I started a hiking Club with Mr. Pat, one of our homeroom teachers. But before they let me join, Mr. Pat made it clear that I had to have a doctor's release. So I made an appointment with Dr. Johnson and basically begged, pleaded and cajoled my way into a "release"...such as it was. I had to promise that I would hike no more than 2 miles at a time and at no higher elevation than 2000 feet. Fortunately for me, he didn't put the criteria in writing, and I never volunteered the stipulations to my teacher. But I was good to go! Our first hike was five miles at 4,000 feet elevation. I was the last to get there and towards the end I felt like my heart would just pound right out of my chest, but I made it. I really just thought that most people felt that way. To feel my heart pounding in my ears was “normal” for me. So it never occurred to me that I had any symptoms; I was just out of shape. From that point on though, there was no stopping me. Before the year was up, I had climbed Mount Baldy, which was just over 10,000 feet high. And again, I was the last one to reach the top. P. hiked back and hiked back up with me. But I did it. I climbed a mountain and I didn't have a heart attack. It was my “Mount Everest”.
When I was in high school I had to take adaptive PE. But everyone just called it retard PE (politically correct was not yet a concept). Basically, we got all dressed up for PE, then sat around in a room and looked busy until the bell rang. I used to stand at the door and watched the kids play tennis. I begged the tennis instructor to let me play. But her answer was always the same “I just need a note from your doctor”. So one day, while at my cardiologist’s office I got up the nerve to ask if I could take archery (somehow forgetting to tell him that tennis was the other half of the class). He reluctantly signed a somewhat vague statement releasing me to take the course (thank God her never wrote specifics!). The next day I ran to the tennis instructor and showed her the note. And I was in regular PE for the first time in my life! No more retard PE. As it turned out, I was terrible at tennis. I spent a LOT of time chasing after the ball, and I never could get the one-handed back-hand swing. No tennis star had yet made the two-handed back swing famous. But, I never complained, and I was always thrilled to chase after the ball. It made me fell normal.
During my second or third year of high school, my friend P. and David and I joined a hiking club with Mr Martin, the French teacher as adviser and chaperon. Of course, again I had to get a doctor’s release. I swore to Dr. Johnson (again) that if he let me do this, I would strictly abide by our previous rules (which I conveniently never kept the first time). Almost every weekend I was hiking or backpacking. By then, neither of my parents were around to even ask how far, or how high or how long I'd be gone. Towards the end of my junior year, the hiking club backpacked down into the Grand Canyon and back up. I wasn’t last, but close. But by then I had gotten used to the struggle. Climbing out of the canyon was grueling, but it was an awesome trip. For me it was just one more piece of evidence that the doctors and mother were wrong. My heart was fine. I could do anything I put my mind to. And I did.
Until I didn't. Three days before my 21st birthday, I had open heart surgery for the second time in my life. And that time changed my life forever. I’m no longer the slowest, the weakest or the least fit.
To be seen as weak, unfit, ineffective or incapable was my worst fear as a child. And that fear still stays with me as an adult. I have no more physical limitations, yet I still need to be near the front of the pack when I’m hiking, bicycling, or whatever I’m doing because I’m afraid I’ll get left behind, and I won’t catch up. I don’t know if that fear will ever go away. But now I know where it came from. And I can get on with my life.
My father finally won the argument and took off the training wheels from my bike. My mother was standing on the steps of the backdoor watching as I took my first ride unencumbered down the driveway. Halfway down I fell and broke my glasses. My mother went ballistic and started yelling at my father, who started yelling back at my mother, and everyone forgot about me. I got up, got on my bike and rode down the driveway and down the block to bigger and better things. I never looked back. And sometimes even now, when I am afraid that I "can't", I remind myself to keep riding and not look back.
Tuesday, September 8, 2009
Running Away
I always fantasized about running away as far back as I can remember. I wanted to be somewhere else, someone else, in another family, living another person's life. I used to sit on our front porch almost every evening when it was dark, and gaze at the lighted windows in the houses across the street and wonder what it was like living in those houses, with those families. I imagined a mother cleaning up the dishes from dinner, a father reading his newspaper, playfully shooing the kids out of the room, but secretly glad that they wanted to crawl all over him, calling him "daddy" as they played their games before bed. I ima
gined all kinds of interactions and all kinds of families. I imagined myself in those families; loved as part of the whole, and missed when I was absent. Any family, as long as it wasn't the one I had.
When I was younger, I fancied myself running away as a hobo. My uncle, Jim, was a children's TV star, "Mr. Wishbone" and had a TV show on every weekday morning, plus Sundays. Unfortunately, one of his competitors was another children's TV show called "Hobo Kelly". I was not so secretly in love with Hobo Kelly (but did feel somewhat guilty about being disloyal to Jim) and watched her every chance I got. She wore old patchwork clothes with a floppy sailor's hat, and her face was made up as an almost (but not quite) sad clown. I dressed up as a hobo, and fashioned a hobo stick with all my worldly belongings stuffed into a bandana (usually a stuffed animal or sweater, since not much else fit in a bandana) tied onto the end of my stick. Jim would sometimes use makeup to make me look like a hobo. I envisioned running down to the railroad tracks and living a life "on the rails": camping with the rest of the hobos, cooking cans of beans over the fires lit in the oil drum barrels, and falling asleep watching the stars, knowing the other hobos had my back. Even though they were hobos, they were a community, maybe even a family.
I was about 6 years old the first time I remember "running away". I put on my hobo clothes (old pants with holes in them and a huge old men's sport coat with the arms rolled up), packed up my hobo stick and corn cob pipe and walked out the door to go down to the railroad tracks. I was only allowed to go down to the end of my block, and I didn't even know where the railroad tracks were. But that didn't stop me from walking to the end of the block, sitting down on the curb and waiting. For what I'm not sure; but when it was time to go home, I went. I would "run away" as a hobo to the end of my block many more times before I realized that I needed a better plan.
A couple of years later, the circus became my outlet as a fantasy for escape. I remember clearly sitting in my grandparent's den in front of their black and white TV watching a movie called "The Greatest Show on Earth" with Tony Curtis. Nana was cooking dinner, and we were waiting for Papa to come home from work. I was enthralled with the life of the circus. Running away and joining the circus became my new fantasy. I could even be the sad clown hobo (I had all the clothes after all). And the best part was that Jim was already in the circus. He would get asked to be the emcee as "Mr. Wishbone" and ride into the three ring circus on an elephant. So I wouldn't feel so lonely. Everyone knew that circus people were a family; a family of misfits maybe, but a family all the same. I told Nana and Papa about my plans over dinner. Papa laughed and said that they'd miss me, but they would come see me in all the shows. He looked at Nana and said with all the pride in the world, "Isn't she something?"
So that was my plan. At least until Jim stopped riding the elephants in the circus. I never did get up the courage to run away. Some years later, my older sister Cindy actually did run away, but that's another story.
Then the day arrived; the day that changed everything. You know it's that kind of day where nothing will ever be the same. You don't realize it then, maybe not even for decades afterwards. But when you finally look back, you can say, that was it, that was the day when everything was turned upside down and inside out; where you suddenly realize that everything you believed was wrong, and everything you feared was true, and nothing was as it seemed.
On that day, I remember my father waking me up, which was unusual, because I was always the first one up. I was the "early riser" in the family ever since I can remember. But this day, my father woke us all up with a sense of urgency in his voice. My father doesn't deal well in a crisis, and his voice betrays him every time. On this day, that day of days, when I was 11 years old, my father shook me, my 2 sisters and my brother awake to tell us that my mother was missing; or more to the point she ran away from home; she left a note saying that she was running away to find "something". But the note didn't say where, or when, or if she'd be back. Just that she couldn't be here, with us anymore.
Later that day, or maybe it was the next, my father found out from Papa that she had checked herself into a place called the Scripps Clinic down in La Jolla, close to where Nana and Papa lived. I just remember being herded into the station wagon for the 2 hour drive down to San Diego. On the trip down my father explained what had happened, or at least what Papa knew. The "clinic" turned out to be a mental hospital; and my mother drove down, walked in, and told them that "something was wrong". They told her she was having a nervous breakdown, and so she did. This was the early 70's. A nervous breakdown then didn't mean anything more than it does now, which, as it turns out has no defined meaning. All it meant back then was that something was terribly wrong, and no one knew what "that" was. By the time we all piled out of the station wagon, I was pretty sure I had the whole thing figured out. She was feeling guilty about the way she had been acting at home: screaming and yelling at us and my father, for causing all the arguments and fights that seemed to erupt for no particularly good reason. That's what she was running away from. That's why she came here to get help. She wasn't crazy. They just needed to help her stop screaming all the time.
When we arrived, we were all taken to a large open room where a lot of people were sitting, reading, watching TV or just chatting. I didn't really understand at all what I was seeing; this was a mental hospital. Weren't these people supposed to be crazy? They all looked so normal, it was spooky. The only thing weird was that everyone was still in their pajamas in the middle of the day. When my mother finally arrived, she was led into the "common room" by a man who turned out to be her doctor. He took my father aside to talk to him while we sat there and pretended not to be freaked out. My mother just sat in a chair opposite us and stared, at me mostly, waiting for the doctor to be done with my father. She was wearing leopard skin silk pajamas and a blank look on her face that I will never forget.
The doctor finally came over and sat down next to my mother, facing us. He wanted us to know that our mother was doing well, but was very fragile. Any amount of stress could set her back and make her very ill again. We all had to be very careful not to cause her any undue stress. In particular, and here he looked directly at me, that I especially needed to be very careful not to unnecessarily provoke her. I couldn't really believe what I was hearing. Cause her undue stress? What about all the stress she caused us? What about all the times she would just explode over nothing? The times she would cry over nothing, or sleep in a dark room and not get up or dressed for days. Weren't they supposed to be fixing that? And why me, in particular?
We went on a "tour" to her room, and then she showed us the activity room where they made crafts. We left her there, piled back into the station wagon and drove the 2 hours back home. I said nothing the whole time while we were there, and nothing the entire ride back. I was confused and angry, but really mostly confused. For the next few months, she stayed there, doing crafts. My father tried to help out with the house, but he was really not very good at it. He did cook us dinners, but they mostly consisted of whatever he could fry in bacon grease. He finally broke down and hired a housekeeper named Jean, who I loved. She was a great cook; much better than my mother, who for the last few years hadn't really cooked much of anything, and definitely better than anything cooked in bacon grease! She was pretty stern with the other kids, but for some reason took a liking to Greg (my next door neighbor) and me. She'd bake cookies and let Greg and I sneak the first few that came right out of the oven (as long as we ate them with a full glass of milk), whereas everyone else had to wait for dessert! She made meatloaf with a perfectly hard-boiled egg in the center, which always just amazed me. But mostly I liked her because she was there, consistent and reliable. And when I came home from school, it was quiet. My mother would send home "presents" for us…bracelets, leather stitched coin purses and moccasins that she'd made in crafts. I threw mine away. How was making moccasins going to make her better?
Finally, it was time for my mother to come home. She had been there for several months. Before they would release her, we all had to go down for a "family conference" with my mother and her doctor. At the conference, the only question the doctor had to ask was "Do you think you can manage to be good enough to not provoke your mother into another nervous breakdown?" This question was not directed to Mark, Cindy, Teresa or even my father. He asked it of me, an 11 year old girl, who got straight A's in school. Not my brother (who was always doing something wrong), or my other sisters (who barely got passing grades). He wanted to let me know that I was the reason she was there.
I wanted to scream "Just keep her here, I don't want her anymore"; which was true. But I couldn't say it. I couldn't say anything. The hurt, anger, shame and rage was so palpable I could taste it boiling in my throat. Was I really the sole reason that she ran away; did I really "drive her crazy" as my mother so delicately put it? And were my actions going to determine whether she stayed home or got put back in the loony bin to make moccasins the rest of her life?
All I could do was nod yes. The doctor wanted me to hug my mother, as a show of good faith. "It will let her know that you can be that good little girl that she wants you to be". I hugged her. But at that moment all I could feel was sick. Sick at the thought that I was the cause of my mothe r's "craziness", sick at the thought of how I was supposed to make her better; but mostly sick at the thought of her coming home.
I wanted to run away, yet again. Only this time, I wanted to run away from myself.
Sunday, August 30, 2009
Introduction
Things are never what they seem. That’s the story of my life. My life was never as it appeared. Not to outside people looking in, and as it turned out, not to me either. But that’s for later.
Since I was little, I remember my uncle Jim (who never wanted me to call him uncle, so it was just Jim) always said to me “You and I need to write a book. Nobody would believe this!”
When you are ten years old, writing a book seems like a VERY cool idea, like becoming an astronaut or a scientist or climbing
But Jim persisted. ”We have got to write a book” I would hear him say every time we talked on the phone, or spent time together laughing at our families, and the situations in which we found ourselves. By the time I was thirty five, I was now back in school (again), and very busy with being thirty five and raising 2 babies. This, as you will soon find out, was more complicated than you might imagine. But Jim made me promise, that no matter what, we w
ould write a book someday about our crazy family.
Now I’m fifty, and for the first time in my life, I feel like there might not be enough time to do all the things I wanted to do. I never became an astronaut…turns out flying gives me vertigo; not exactly conducive for circling the galaxy. I never climbed
And with some good luck and Karma, I still have a shot at some pretty awesome experiences yet to discover. Jim died back in 1996, right after I graduated PA school. It was a devastating blow to me. He was my one. The one who understood all the craziness in my life; not just from my childhood, but what I was dealing with in the present. And his death sparked off a whole list of questions about my life I never even knew to ask.
But I’m good at keeping promises. I finally am writing the book about our crazy family. So this book is for you Jim. We are finally writing that book.
Saturday, August 22, 2009
My First Few Years
My family moved to the house we all grew up in when I was 2 years old. It was a big, brick 2-story colonial house in a quiet suburb northeast of Los Angeles. It cost my parents $25,000 to buy that house, a small fortune back then for a young family. Of course, they had no credit, and so the woman selling the house financed it for them. They settled on a monthly payment, and that's all it took. They never even set foot in a bank or loan office.
The neighborhood used to be all orange groves before houses were built, so almost every house on our block had at least one orange tree in the backyard. It was a street lined with maple trees in front of every house and young families. I loved that house. It had 3 bedrooms, a large den with hardwood floors, a long driveway and a huge backyard with orange, lemon, fig, peach and loquat trees.
When we first moved in it was just Mark, Cindy and myself, but my mom was getting ready to have my baby sister Teresa. My father hired a housekeeper, Helen, to help my mom out while she was pregnant. I don't really remember much of her except she was kind of stern, and very protective of me, by orders from my mother. Just in case I might "catch something" from the other kids. Because I was so isolated from my brother and sister, I was the "unknown", Mark and Cindy were always trying to get a peek, or sneak in when no one was looking. But Helen always shooed them out so they were left to play on their own, and I was pretty much left alone.
One day shortly after we moved in, my mother, who was still pregnant with Teresa, was upstairs napping. We still didn't have enough furniture to fill that big house, and there was lots of empty space that just begged to be used. Mark and Cindy wanted to play with me but Helen wasn't having any of that. She told them to go find something else to do. Suddenly there was the great rumbling sound of thunder coming from downstairs. Mark and Cindy had found the perfect roller rink on the hardwood floors in our big empty den and were skating circles around and around with metal skates strapped to their shoes. Shortly afterwords, those somewhat scarred and battered hardwood floors were covered with wall to wall carpeting.
I remember the day when my parents brought Teresa home from the hospital. She was born in mid December, and I guess the hospital thought it would be cute to send all the new babies home in a Christmas stocking. So when my mother walked through the door carrying a Christmas stocking, naturally I was pretty excited. But when she bent down to show me what was inside, I was confused. It looked like they sent home a baby monkey! Teresa was covered in thick, black hair...everywhere! I was sure somebody at that hospital place had made a terrible mistake, and we would need to return her for the right kind of baby! But she eventually lost the hair (at least the extra hair!) and she became the most extraordinarily beautiful child with big blue eyes, and jet black hair in ringlets. As she grew older, she came to look like Elizabeth Taylor.
We had a dog named Trixie that followed me everywhere, or maybe I followed her everywhere. I just remember always being around Trixie. When I rode my tricycle around the backyard, Trixie was there to get in the way so I couldn't go too far or too fast. I would crawl into big cardboard boxes to play, and Trixie would crawl in right after me. I was so little for my age, that she would dwarf me in that big box. She was a big Collie with beautiful long hair and a long, cold nose. And she was the only living creature I was allowed to play with for my first few years. Funny how my mother thought that the dog was
somehow cleaner than my brother or sister.I loved that dog. She was my best friend; my only friend for a while. But still not the same as having other kids to play with. Not the same as having a brother and sister. And I think it drove my mom crazy that I loved that dog so much. It took my attention away from her. A few years later, my mother told us that Trixie had run away. My mom and dad drove us all around the neighborhood in our station wagon "looking" for Trixie and calling out her name for hours. I found out a few years later from my next door neighbor that my mom called somebody and sold Trixie to him while we were out of the house one day. She sold my only friend.
Although I couldn't know it then, my first few years in isolation from my family was a foreshadow of the rest of my childhood.
Saturday, August 15, 2009
My Mother
My mother's family came to the United States from England. Sheffield, England to be exact. They left Liverpool, England on April 16, 1910 and arrived in Portland, Maine on the S.S Canada passenger ship. They were part of the Mormon wave of immigrants from Sheffield, England that started in the 1840's. Overcrowding and unsanitary conditions made for a wretched existence in Sheffield and so the Mormon missionaries were quite successful in recruiting converts with the promise of a new life in the United States. Some even had their trips funded by the church. My mother's family paid their own way, but because her father was only a hawker and draper, they traveled in steerage class. Steerage class was the default choice for poor, but hardworking people unable to afford proper accommodations. Often hundreds of people were housed in one room. Once a day they came to the deck for their daily meal of beef broth and bread. It was a long, harrowing and often painful journey. My partner always says "When all your choices are painful, choose the pain with hope". They left a hopeless existence, traveled a painful journey with the hope for a better future. Upon arrival in the United States, they traveled directly to Salt Lake City, Utah where the oldest sibling, Fanny, had already settled, having been the first in the family to immigrate from England in 1907.
She was only 4 years old at the time she immigrated, but she remembered that trip. She was 97 years old when she told me that story, and she died a few months later. That was 5 years ago and I still miss her. She was my rock, my savior, my person. She taught me how to live and love by example. She was married to the same man for over 50 years when he died. She loved him so much, we thought she would soon follow suit, but she lived for another 25 years. Sometimes I think she did so only because she felt like I needed her. And I did.
She taught me how to believe in myself. She told me throughout my life that I could do this or that, that I would...someday, that I should always try. She thought I could, would, should do anything I wanted, and so I also came to believe it. She instilled in me confidence.
She always believed I was a good person, even when as an adult I couldn't always believe it. She never scolded or even raised her voice; in truth, I never wanted to disappoint her so I tried to never give her cause to scold. Her depth of love for me was apparent to anyone who came within her sphere. When I brought my friends home from college, she would tell stories of how I "caught the ball" when I was 2 years old, or some other achievement I had accomplished, some quite ordinary to the listener but always considered extraordinary in her eyes. My ex-partner once said that I could be a mass murderer and her reply would be "Well they must have been very bad people for her to do that". I could do no wrong in her eyes; I knew this, and in a way, she became my conscience.
Her name was Gwen. She didn't give birth to me. She didn't have any legal rights to take me away from an untenable home life. But she was always there when I needed her. She gave me unconditional love. And that was what I needed to survive.
She was my mother's mother. I called her Nana. I just looked up the meaning and origin of the name Nana. It has a Hebrew origin and means Grace. Of course.
I have 2 children now. I didn't give birth to them, I don't have legal rights over them, and unfortunately they don't live with me anymore. But I love them unconditionally, as Nana taught how. I believe in them, as Nana did in me. I try to be there for them when life gets tough. And most importantly, I try to teach them how to live and love by example, just like Nana did for me.
Nana was my mother in every way possible except legally or biologically.
My name to my children is Mamere. It means "my Mother" in French. And everyday I strive to give them what my grandmother gave to me. A sense of belonging and hope, belief in themselves and unconditional love. And most importantly, the ability to survive. And I hope that I have taught them by example that when all their choices are painful to them, to choose the pain with hope in it.
Sunday, August 9, 2009
Starting out
This is the first blog I've ever written. I started this blog to write about life. More to the point, my life.
For years now I've been "trying" to write my memoirs. I've found it much harder than it originally sounded. Just sit down and write it, right? But sometimes when you are writing about life, life just seems to get in the way. Busy schedules, family life, friends and work. And now I'm writing a textbook for work, which is a completely different style of writing. To be honest, I'm much more suited to write textbooks. I'm logical, frank and to the point. And writing about events and family dynamics demand a much more prosaic and sometimes conversational style.
Sitting down to write a book, or even just a chapter seems a bit daunting, or at least that's been my excuse up until now. So I thought maybe just writing a blog would be, maybe not easier, but more manageable. And hopefully, there will be more immediate feedback, than say writing an entire book, sending it to a publisher and having the whole thing rejected! This way I can get rejection bit by bit!
When I went away to college, and new friends started asking about my childhood, I would tell them it was pretty normal. I grew up in a family of 4 children, 2 sisters, a brother and a mother and a father. I was raised Catholic, we went to church on Sundays, to the beach on Saturdays; we took family vacations in the station wagon and my father worked a lot. Your typical American family in the 60's and 70's.
All of which was only partially true. If you took every element of that statement apart, each was true as a stand alone statement...sometimes. But there has been so much unspoken tension, drama and outright lies, not only in my immediate family, but as I've started to do genealogical research, in our whole family history as well.
In my family, the " bad" things are not spoken of, and if not spoken, they can pretend they never happened. I think for some members of my family it is a case of selective memory; in others a case of denial, and still for others it is just outright lies. The adage "It's somehow not real unless it's spoken out loud" could describe my family. And "Normal" was what I learned to tell teachers and friends because I didn't want them to know the truth. And when you say it enough times, you begin to believe it. As I lived my life as an adult, however, I began to rethink what"normal" really means. So I decided to write about my life just to give voice to some of those memories and get them out of my head and into the open, where they belong.
Someday, I'd like to write a book that somebody else reads. For now, I'll have to settle for a blog, that I'm hoping somebody else will read, and maybe give some feedback on my writing. All of my stories are true, but I may change names, etc for privacy sake.
I don't know how often I'll write. But I hope that whatever I write is at least compelling enough for at least one other person to read. Everyone has a story. And this one is mine.
For years now I've been "trying" to write my memoirs. I've found it much harder than it originally sounded. Just sit down and write it, right? But sometimes when you are writing about life, life just seems to get in the way. Busy schedules, family life, friends and work. And now I'm writing a textbook for work, which is a completely different style of writing. To be honest, I'm much more suited to write textbooks. I'm logical, frank and to the point. And writing about events and family dynamics demand a much more prosaic and sometimes conversational style.
Sitting down to write a book, or even just a chapter seems a bit daunting, or at least that's been my excuse up until now. So I thought maybe just writing a blog would be, maybe not easier, but more manageable. And hopefully, there will be more immediate feedback, than say writing an entire book, sending it to a publisher and having the whole thing rejected! This way I can get rejection bit by bit!
When I went away to college, and new friends started asking about my childhood, I would tell them it was pretty normal. I grew up in a family of 4 children, 2 sisters, a brother and a mother and a father. I was raised Catholic, we went to church on Sundays, to the beach on Saturdays; we took family vacations in the station wagon and my father worked a lot. Your typical American family in the 60's and 70's.
All of which was only partially true. If you took every element of that statement apart, each was true as a stand alone statement...sometimes. But there has been so much unspoken tension, drama and outright lies, not only in my immediate family, but as I've started to do genealogical research, in our whole family history as well.
In my family, the " bad" things are not spoken of, and if not spoken, they can pretend they never happened. I think for some members of my family it is a case of selective memory; in others a case of denial, and still for others it is just outright lies. The adage "It's somehow not real unless it's spoken out loud" could describe my family. And "Normal" was what I learned to tell teachers and friends because I didn't want them to know the truth. And when you say it enough times, you begin to believe it. As I lived my life as an adult, however, I began to rethink what"normal" really means. So I decided to write about my life just to give voice to some of those memories and get them out of my head and into the open, where they belong.
Someday, I'd like to write a book that somebody else reads. For now, I'll have to settle for a blog, that I'm hoping somebody else will read, and maybe give some feedback on my writing. All of my stories are true, but I may change names, etc for privacy sake.
I don't know how often I'll write. But I hope that whatever I write is at least compelling enough for at least one other person to read. Everyone has a story. And this one is mine.
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