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.

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.

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.

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.