Nana and Recollections of a Simpler Time

Sandi put away all the Christmas decorations yesterday. If it were just up to me, I might leave the decorations up all year all (well, at least longer). Because Christmas always makes me think of my grandmother.

While I have lots of stories involving my grandmother, and will write them all soon, I am starting at the end of her life. It was one of the hardest things I've had to do to say goodbye to her and could only bring myself to do it out of sheer love. It gutted me personally to lose her, the one person I knew would always be on my side, no matter what. 

My grandmother, Gwen to most of the world, Gwenie to her close friends and relatives, but Nana to me (and Nan when I grew older), passed away on June 7, 2004, just 2 weeks shy of her 98th birthday. She was the one constant in my life. My rock, my shield, my hero. It's been 16 years since she died, and I still talk to her every day, get teary eyed when I think of her and miss her all the time. 

Once, when I was out visiting her, she asked me to help her go through a box of photos and mementos. I came across a photo of my mother. Ever since my mother died, my grandmother has not mentioned her to me. I knew Nana thought about her, quite a bit in fact, but she never discussed my mother with me. But that day, Nana started talking about her. She wanted me to know that my mother loved me, despite all that went on before her death; that it was her "disease" that lashed out at me, not my mother. It freaked me out a little. I think that Nana thought she was going to die imminently and wanted to be sure to get a few things off her mind. The next day, when I made my daily phone call to her, after answering the phone she said, in a somewhat annoyed tone of voice "I don't know why I'm still alive".

For years, she would continue to say "I don't know why I'm still alive", and I would always reply "because I need you". To be honest, we all thought that once my grandfather, Papa, died, she wouldn't be far behind, as she was dependent on him for everything. She lost almost all her retirement savings (through no fault of either Nana or Papa, another story to be told), but still had Papa's pension and social security. Instead of giving up, she picked herself "up by the bootstraps", learned how to balance a checking account, moved to Grass Valley to a senior apartment to be closer to Papa's sister, Lil, and me, a sophomore at Humboldt State University at the time, and made a life for herself. She outlived him by over a quarter of a century.

I thought I was being kind and loving by telling her how much I needed her. But as time went on, and she became bed bound, in a nursing home (where she never wanted to end up), in a state far away from me or any of her other grandchildren, I realized that my reply wasn't kind or loving. In reality, I was prolonging her suffering, since Nana would do anything for me, including trudging through life if she thought that's what she needed to do to keep me safe. She was a tough old gal, I'll give her that. She outlived her mother, father, 7 siblings, her husband, her only son and daughter and her only grandson. 

After Jim (her son) died in 1996, I became her medical decision maker. She lived in a nursing home in Grass Valley, California, and I lived half-way across the nation, in another country called Texas. Her niece, Vanessa, worked at the nursing home, and was incredibly good to my grandmother. And I would go out to visit her every 2 months or so over a weekend. When the nursing home called to tell me she wouldn't eat, and wanted to give her medication to boost her appetite, I agreed. But when they then called recommending a feeding tube, I declined. I just couldn’t force her to eat. And when she stopped drinking water, I knew that it was her time, even if she didn't. I had to go tell her that I knew and give her my permission to die. It sounds somewhat odd when I say my permission, as if anyone needs that. But I truly believe that she did need to hear me say the words, otherwise she would have hung on until doomsday if I'd asked her to.

I flew out to see her on Saturday, June 5, 2004, and she wasn't responsive when I arrived, sleeping most of the day and barely arousable. She just kept hanging on despite no food or water for over a week (it’s where I got my determination from, I’m sure of it). I sat holding her hand and talking with her all day. And I read her the letter below. I don't know if she heard me or not, but I read it twice just in case. I would have read it more, but for some reason my throat kept closing up and my eyes wouldn't stop leaking. I left the letter with her nurse, asking if someone could read the letter to her again each day.

The next morning, Sunday, June 6, 2004, I flew back to Dallas. Later that evening, the nursing home called. I was sure they were calling to tell me she had passed away. But it was the hospice nurse calling, telling me that they all read the letter and the whole nursing staff was in tears. She promised me she would read it to Nana every day. Nana woke up Sunday evening, and the hospice nurse read her the letter. The next morning, the nurse called to let me know that Nana had died in her sleep. I'm hoping she knew what a difference she made in this world..

June 5, 2004

Dear Nan,

I am writing this letter to you in your twilight hours. You are 97 years young at heart, and are approaching the end of life. I will miss you more than you could imagine, but I know it’s time for you to move on. You lived well, and you lived by example and you will always be in my life. From the eyes of an adult and the heart of a child, these are only a few of my favorite memories of my time with you.

I remember lots of hugs and kisses. You always told me how proud you were of me, even when I hadn’t really done anything of substance. I could always see the pride in your face. And I always felt it in my heart. You loved me like no one else ever did, and I will never forget the feeling. You were my hero. The one who rescued me time and again-when I came home from the hospital, when I was sick, when my family left me and went on vacations, or just when I wanted to come over-you were always there.

You taught me how to play cards. I remember countless hours when I was very young of sitting at your kitchen table in the little house on Padilla Street, playing gin rummy and having a “highball” of 7-Up. Amazingly, I always won, and you’d throw your cards down and say “Oh I can’t believe you beat me again! You little stinker!” You made me feel smart and confident. 

When I was a little older, I remember countless more hours playing double solitaire with you. Most of the time I would win, but you’d make sure you won a couple of games just so I didn’t catch on you were letting me win. I miss those card games.

I remember watching you cook, and thinking you were the best cook in the whole world. I still believe that, because you always cooked with love. You never made it seem like it was a burden to you. You always made sure to cook my favorite meals, or maybe they were my favorites because you cooked them for me. I can still smell and taste the breaded pork chops baked on sauerkraut-my all-time favorite. Your pot roast-which I could never quite duplicate-was tender and juicy and almost melted in your mouth. Your creamed onions, strawberry shortcake, and angel food cake. One of my favorite food memories is your chop suey on Christmas Eve. We would come over to your house on Padilla on Christmas Eve, and you would make chop suey-with beans and noodles and beef-I don’t know what all was in it-but I can taste it. I never wanted to go home those evenings, even though I knew Santa Claus was coming in the morning. Staying with you was like having Santa Claus around all year.

I remember one Christmas when I was in Huntington Memorial Hospital with pneumonia. I was very sad, and alone. And bright and early on Christmas morning you came into my room and surprised me. You brought me presents and we spent the morning opening them. You were my hero that day.

I remember making chocolate chip cookies with M&M’s on top. You’d let me place the M&M’s in any pattern I wanted. I remember the aprons you wore when you cooked, and the smile on your face. You taught me to love cooking, not so much because you taught me how to cook, but because I saw how much joy it gave you to cook for me, and others. I thought if I could make others feel this special just by cooking for them-well, then that’s got to be worth something!

The best trip I ever took was when we went to Salt Lake City on the train when I was four years old. I remember walking to the dining car to eat lunch, but I was too nervous to eat anything. So you ordered something with avocados. You pointed out all the scenery and especially the cows. I was so absorbed in watching the cows, that I didn’t realize I had eaten your entire avocado until lunch was over. And at night, when we were in the sleeper berth all tucked in, you brought out your trusty box of See’s candy for a bedtime treat. Memories are very powerful. I can still hear the noise of the train at night, I can feel the rocking of the train, and I can taste the chocolate in my mouth. And I felt safe in a very unfamiliar environment. It was a grand trip!

I remember being out in the backyard with you while you gardened and I played. I remember when I stayed over your house, you would have me take afternoon naps. You would tuck me in, kiss me and say “goodnight, sleep tight and don’t let the bedbugs bite”. And every afternoon when I woke up, you would have set up a treasure hunt for me, complete with little clues you wrote on scraps of paper. You’d send me all over the house to a final destination where I would find a prize. Sometimes the prize was big-a stuffed animal, a game. Sometimes the prize was little-a piece of See’s candy. But it was always, always one of the most precious rituals we had.

One of my favorite memories is watching the Jackie Gleason show with you and Papa. You would let me stay up late on those nights. You’d turn the lights off in the den, and you and Papa would sit on the couch and I would sit on the floor at your feet and we would watch Jackie Gleason and the June Taylor dancers. And every time, around half way through the show, you’d bring out a Hostess pie for me (it was always either boysenberry or lemon-my favorites) with a glass of milk. And after the show, you would put me to bed, tuck me in, and sing me a song or tell me a story. That is a great memory.

I remember your piano. You would go about your housework and then just sit at the piano bench and play for a few minutes. When I was old enough, you taught me how to play. I remember so many times when you played and we sang “how much is that doggy in the window”. And at Christmas time, when I was very young you would play and sing the song ”Jolly old Saint Nicholas, turn your head this way, don’t you tell a single soul, what I’m going to say”. And then you would put our names in the song. “Christmas Eve is coming soon, now you dear old man, tell me what you’ll bring to me, tell me if you can. Marky wants a fire truck, Cindy wants a dolly, Tina wants a chemistry set, she thinks dolls are folly. As for me what I want best I really do not know, so I think the wisest thing to do is leave the choice to you.”

The song I most loved to hear you play was “Fascination”. I would ask you to play that every time you sat down at the piano. I thought you were the best piano player that ever lived.

When I was at my home on Curtis Avenue, I remember you walking miles from your home on Padilla over to our house to visit. And when you moved to Oceana, I remember you walking around the complex there. And then when you moved to Grass Valley, you walked around your apartment complex every day. You showed me by example the simple pleasure of walking.

I remember on several Halloweens, when I was too sick to go trick or treating, you and Papa would come over to pick me up, and take me back to your house. You would always have a bag of treats waiting for me. I remember one Halloween, in particular, I was sick. I was very upset because I couldn’t go trick or treating. You came over to the house dressed in a hat and trench coat, and just about scared the pants off Teresa and I when we answered the door. But you took me back home with you that night and gave me a bag full of marbles, and Papa taught me how to play. I loved them, and didn’t mind at all not going out that Halloween.

I remember the rocking chair in your den. You would have me sit in your lap and rock back and forth for what seemed hours. When I was sad, or sick or just tired, you would rock me. I don’t think anyone else ever rocked me as a child.

When you moved to Oceana, I would come down on the train to stay with you and Papa. Papa would drive us to the mall and you and I would spend the day shopping, with lunch. You loved shopping and lunch. And when Papa picked us up and drove us home, he would have made homemade pasties for dinner.

You loved your soap operas-General Hospital especially, and All My Children. I still remember sitting on the den floor in Oceana watching you watch General Hospital and All My Children and you exclaiming "Oh Erica, she's such a pill!". To this day, when I hear General Hospital, I think of the old melody that was their opening song and remember you.

I remember all the holiday dinners you would fix. The turkeys and ham, the Jell-O mold salads, the mashed potatoes and gravy, the ambrosia salad. And you always made sure you had plenty of pickles and olives because you knew they were my favorites.

When I went away to Humboldt College, you came up to visit me. I showed you all around the campus. I remember showing you the computers, which were fairly new back then and you thought I was so smart! And every month, you would send me your famous “care packages”-in shoe boxes packed with underwear, socks, toothpaste, deodorant and homemade baked cookies. I never bought underwear for myself until I was 25 years old!

When I was in college, I would come up to visit you in Grass Valley. I would spend the day skiing at Tahoe, and you spent the day shopping and cooking. And when I came home from skiing, you would have cooked all my favorite foods. I’d eat until I thought I would burst, and you’d always say “Are you sure you don’t want just a little more?” The next morning I’d drive us to breakfast somewhere. And when I moved to Dallas, you flew out to see where I lived and to make sure I was okay. You always took good care of me. 

When I was young, I once asked you why I had so many problems with my heart. You told me it was because God knew that I was strong and brave enough to handle it and someone else would not be. So I always made sure that I was.

You always said to me “I just want you to be happy”. You gave me love, warmth, affection and caring when I couldn’t find them elsewhere. You took care of me when no one else was there. You taught me how to be strong, proud, determined, smart and honest. And you loved me unconditionally. You were my example of how to live. 

You don’t have to worry about me anymore. All your worries and all your prayers got me where I am today. I am well and happy and safe and healthy. And I have someone to take care of me who loves me very much. You are the best grandmother I could have ever hoped to have.  I carry all these memories with me every day because they are warm and comforting. And I hope that knowing that is comforting to you. Because I just want you to be happy Nan. Go be with John, Jim and Joan. You deserve the rest. Sleep peacefully, and know that you were a hero. So goodnight Nan, and sleep tight. And I’ll watch out for the bedbugs tonight.

 I'll love you always

Tina

My Hero

Nana and I on our way to the train statin to go to Salt Lake City when I was 4 years old

Nana making our turkey on Christmas

Visiting Nana and Aunt Lil while I was in college

Nana and I at her piano at Christmas

I played cards with Nana every time I went to see her up until the last 2 years when she just couldn't remember how to play anymore. She lost her memory of most things, but she remembered me right up until  the end.

Nana and her niece Vanessa

One of the last photos of Nana and I 

"Christmas Time is Here"

The week before Christmas I walked to work and the fog so thick it was like pea soup; that was one of my grandmother Nana's favorite phrases. But this time it really was just like pea soup. I couldn't even see the next house until I was in front of it. It reminded me of what I used to imagine when I listened to the old Sherlock Holmes radio stories. London Fog. A fog so thick you could get lost in it.

I love fog. I love the look of it, the feel of it on my face, the smell of it and the taste as I breathe it in. Some people think fog is scary - since everything is shrouded you can't see what's coming. Stephen King even wrote a horror story about it called "The Mist". But for me, fog covers up all the blemishes, all the ugliness. I don't need fog to know it's a scary world out there and things will jump out of nowhere and derail me even in the light of day. Fog covers me like a blanket but still lets me see the light...Christmas lights. Fog always reminds me of Nana.

Nana loved Christmas. It was hands down her favorite time of year. She was born and raised a Mormon, but converted to Catholicism so she could marry my grandfather. Having come late to the party, maybe she felt like she had to catch up, but she was the best Catholic I'd ever met, even to this day. She loved all the ceremony, rituals and symbolism  of the church. And what is Christmas if not all ceremony, rituals and symbolism?

Nana was like a little girl at Christmas. She'd bake all kinds of cookies - bourbon balls, pecan tassies, shortbread cookies, M&M cookies. When I was very young she'd let me decorate the M&M cookies. As we got older, she'd let us sneak some of the bourbon balls. And when I was in college, she'd send me coffee tins full of her cookies for me and my roommates. Back when the mail was decidedly slower, the bourbon balls had enough time to marinate that when I opened the coffee tin, I'd get drunk just on the fumes! She'd have Christmas music playing from her records all day (from the likes of Perry Como and Andy Williams back then). She didn't have a big house, but she would have every corner of it decorated. She'd clap her hands in glee when it was all done and want to celebrate with eggnog served up in Santa Claus mugs! And she and Papa would dance to Christmas music in the den in their stocking feet with a big smile on her face.

My memories of Christmas were not always good ones. Some were just sad - like spending Christmas in the hospital when I was young and still believed in Santa. How could he possibly know where I was amongst all those beds? And my family didn't come until later in the day after the celebrations were all over.

Nana and Papa saved the day one Christmas I spent in the hospital. Santa came into my room on Christmas morning and explained that he left all my presents with Nana and Papa for safe keeping. Right after he left, Nana and Papa came in my room with presents.  Nana even showed me the note that Santa left on her hearth. I didn't realize until I was in college that Santa was my uncle Jim (who was an actor). So instead of going over to our house first thing on Christmas morning like usual, Nana, Papa and Jim all came to see me. It wasn't a perfect Christmas by any means, but under the circumstances it was as good as it gets.

Some memories were just rip your heart out bloody awful - like the time I was 17 years old. Two days before Christmas my mother, who had not long been home from the mental hospital (again) told me that I was the one driving her crazy. I told her she was already there (in hindsight I realize that being 17 was probably my only excuse for that). She promptly walked down the street and attempted suicide in front of my teacher's house. The police called and I went down to the hospital with my little sister. I remember the nurse standing next to me (well away from my mother) and telling me to take my mother home as I watched my mother screaming obscenities at me while being physically restrained by not one but two police officers. Nana could not save the day then. Not even Santa could.

Christmas for Nana was all about Peace and Joy, and Love and Hope. Yes, it also was about Jesus, Mary and the manger and I happily went to church with her because it made her so happy. But mostly for Nana it was about being a better person and the hope that everyone someday could be as well. And it was about showing that she knew you. She used to sit by her piano in her house on Padilla Street, and play me the song "Jolly Old St Nicholas". She'd change up some of the words, making it "fit" me:

"Jolly Old St Nicholas, turn your head this way
Don't you tell a single soul, what I'm going to say
Christmas Eve is coming soon, now you dear old man
Whisper what you'll bring to me, tell me if you can

When the clock is striking twelve
When I'm fast asleep
Down the chimney broad and black
With your pack you'll creep

All the stockings you will find
Hanging in a row
Mine will be the shortest one
You'll be sure to know

Markie wants a pair of skates
Cindy wants a dolly
Tina wants a chemistry set
She thinks dolls are folly

As for me, what I'd like best
I really do not know
I think the wisest thing to do 
Is leave the choice to you"

Through the years, Christmas has taken on vastly different meanings for me. When I was very young, it certainly was about presents and Santa. In high school when I finally committed to undergo confirmation in the Catholic church, it was about Jesus and Mary. And when I had my own kids, it was all about creating memories with them and going to church as a family. But then as my life and beliefs changed, and I became a Buddhist I found myself unsure how to feel around the holidays. How do I celebrate Christmas?

I have finally come to a place in my life, where Christmas for me is all about the memories. I choose to let the good memories overshadow the bad. I choose to remember Nana as I decorate my tree, listen to Christmas music, try to re-create her bourbon balls. I talk with her on my walk to work pointing out all the holiday decorations downtown because I know she'd love them. And I picture Nana dancing in Papa's arms as I dance around the living room with my beloved in our stocking feet.

Nana's love shrouded me like a blanket of fog. It made me feel safe, it blotted out the bad but still let the light shine through. I haven't yet made it through the season without tears for what I've lost in her. But I'll always be grateful to carry the best of my grandmother around with me every day of the year. And isn't that really what Christmas is all about anyway?

"Christmas time is here
Families drawing near
Oh, that we could always see
Such spirit through the year"
 

Read more: Vince Guaraldi Trio - Christmas Time Is Here Lyrics | MetroLyrics

Finding Myself

Last Sunday, I turned 54 years old. I know that it's not one of those MAJOR birthdays...not like turning 18 (when you can vote), or 21 (when you can legally buy a drink) or even 50 (that's half a century for lords sake!). Most people don't even really pay attention to turning 54, it's just one of those years that slips by unnoticed on the march towards the dreaded 60; the years in between are unceremoniously ignored. But for me, this year will be one of those years I remember for a long time.

Back in 1959, because of my congenital heart defects, my parents were told I wouldn't live past the age of 5. So when I turned 4 years old, they let Nana take me on a train trip from Los Angeles to Salt Lake City. They all wanted me to meet my relatives, believing this would likely be the first and last chance. It was a big trip back then for a 4 year old and one I still vividly remember...but that's a whole other blog.

I've never been one to like being told what I could or couldn't do. Even as a child, when my parents or my doctor said I "couldn't" do something, I would go ahead and do it anyway (just not in front of them!). So when I turned 50, after having undergone 2 heart surgeries and surgery to correct a brain aneurysm (who knew!), I congratulated myself on living 45 years longer than anyone thought I would. Not only 45 years longer, but stronger, fitter and healthier than the vast majority of my contemporaries. I had run a half marathon, ridden the "Hotter 'n Hell 100" - an epic 100 mile bike ride on the hottest day of August in Wichita Falls, Texas (maybe not the smartest plan, and definitely another blog) and made a career out of teaching people how to live longer, healthier and fitter lives. I talked the talk and walked the walk and was proud of it. I had beaten the odds. I was no longer a "heart patient" and was looking forward to reaching at least 100 years...I figured that since Nana lived to almost 98, I had a good shot at it (I may be a bit competitive)!

Just a short 11 months later however, a mere blip in the span of my life, I found myself lying in the cardiac intensive care unit, after having undergone my 3rd open heart surgery (I hadn't really seen that one coming), completely paralyzed on my left side after having sustained not one, but two strokes during the surgery. When the neurologist stood there and told me to move my foot, my leg, my arm, no amount of effort or force of will would make them move. I thought that my life as I knew it was over. But after 18 months and 2 more surgeries (yes - more surgeries - lots more blogs to write!), a pacemaker, medications and a very near death experience - I was doing okay. The paralysis had resolved and I had the use of my left side back. We picked ourselves up, dusted ourselves off and started all over again, by moving across country to the great northwest...Portland, Oregon.

As soon as we got settled in, we went for my first bike ride since my last heart surgery. I was so excited I could hardly stand it! We got our hybrid bikes all cleaned up and "urbanized" with fenders and panniers - we were ready to ride around the "bike friendliest city" in the country! That day, we only rode for about 8 miles, but it felt like 100 to me. The excuse I used and told myself was that my shoulders hurt too much to continue. Which was in fact true - I had 2 frozen shoulders as a bonus to all the surgeries I had endured the past 18 months and the pain still significantly limited my activities. But what I couldn't say, or admit even to myself, was that I was too tired, out of breath, and my heart was pounding so hard and fast that it felt like it would jump right out of my chest. One of the complications after surgery was inappropriate tachycardia, a condition where my heart rate increases inappropriately high with little effort. Once my heart rate reached 175, my pacemaker would override and drop it back to 75; of course then I'd get dizzy and have to stop and rest. I was put on a medication to keep my heart rate lower, but that caused profound fatigue. It did allow me to exercise, but with only very modest effort.

My fear that I couldn't voice was that I would never be able to ride like I used to. That I was "that patient" again. I desperately wanted that feeling of freedom and power when I'm on the bike - riding up hills, against the wind with the world rushing by. Prior to the recent surgeries, I used riding as a form of meditation. It gave me what I desired all my life - a sense that I had conquered my heart defects. I had won, and I was no longer "a patient". Instead, I was a cyclist. The song lyrics I used to sing (in my head) when riding up a long, hard hill was "You can bend but never break me 'cause it only serves to make me more determined to achieve my final goal. And I come back even stronger, not a novice any longer 'cause you've deepened the conviction in my soul. Oh, yes, I am wise, but it's wisdom born of pain. Yes, I've paid the price, but look how much I gained. If I have to I can face anything. I am strong, I am invincible, I am woman". Yes Helen Reddy was my mantra.

Silly I know, but when I was riding my bike on those long rides (and the long rides were my favorite), I felt like I had achieved my final goal - of NOT being a patient any longer. And on that summer day 18 months ago, when I had to turn back on my bike after only 8 miles, I realized not only was I still a patient, but I was weaker and sicker than I ever was before surgery. And that was the hardest pill I have ever had to swallow. So rather than admit defeat, I did other things to stay active. I walked to work most days (almost 3 miles), hiked on the weekends, and walked everywhere else in between. It wasn't as much as I wanted, but it was still more than most Americans.

We've lived here now 18 months, and I haven't ridden my bike again since. The medication that kept my heart rate slow still caused me to be tired all the time. So a few months ago, with my doctor's approval, I started weaning myself off it. It was a gamble - could I really get rid of the fatigue without letting my heart rate prevent me from doing any exercise? I figured it was worth a shot. The day before my birthday last week, we went looking at fitness centers for Sandi. She needed one close by to work where she could continue her training. Sandi surprised me for my birthday and added me on to her membership. The next day, on my birthday, we went for our first workout. They have a cycling studio for spin classes, but there was no class that day, so I went in and decided to see what I could do on my own. Sandi came in and rode with me for the first few minutes, then went on to her workout. I felt pretty good, and I was the only one in the studio, so I decided to try one of my old cycling workouts. Spin hard and fast, keeping my rpm around 85-90, then every 10 minutes come out of the saddle for a hill climb, but keeping my rpm around 60-65. As the minutes wore on, my climbs got harder, and I added sprints up to 125 rpm. At 45 minutes, I was doing my last climb. I was dripping with sweat, my thighs were screaming and I was grunting for air. But I suddenly realized, I was actually doing it...I didn't have to stop, I could gut through it and it actually felt good! Tears mixed with sweat as I cooled down, I just couldn't help it. I was all alone in that cycling studio, just me, the bike and my pacemaker that keeps me alive. I'm dependent on it, you see; I have no rhythm of my own anymore (although some would say I never really had rhythm!).

And it was then that I finally made peace with who I am. I am a congenital heart disease (CHD) patient, and I realize now that I will always be a CHD patient. I will live with congenital heart disease for the rest of my life. It's not a defect (which implies that it's fixable). It's a disease, with all the complications and future implications that a chronic disease entails; I finally get that after 54 years and way too many surgeries and complications. I'm grateful that I was born in an era where the technology and very expensive spare parts are available to keep me alive. But it will be up to me to keep myself healthy and well. After a lifetime of denial, and nondisclosure, I can honestly say I am proud to be a congenital heart disease patient. I survived and I am thriving. Do I still have limitations - absolutely. But I can move my arms and legs, I can walk and talk and ride a bike. And I'm alive and well, and getting fitter by the day (no small thanks to Sandi!). I can't do what I did when I was in my 40's, but I can do a lot more than most 54 year olds. And more importantly, I've finally made peace with and know who I am. And in the end...isn't that what we all strive for?

The Smell of Home Part 2: "Milk" of Human Kindness?"

Jean was gone. Greg and I were left alone after school to navigate our way through the afternoon, which for two adolescents from highly dysfunctional families was dangerous. No one was watching us. Mom was always asleep upstairs; and next door, Elaine was too drunk to care. We missed the cookies, we missed the smell, and we missed having someone who cared whether we were there or not (read: we missed Jean and the home that she gave us, however briefly). So we decided to take matters into our home hands and bake cookies ourselves.
We started out with chocolate chip. We'd bake batches of chocolate chip cookies until we thought we'd gotten them close to how Jean made them (although they never quite tasted exactly like hers...we missed that "special" ingredient she kept secret). When we thought we had the chocolate chip cookie recipe down, we moved on to another variety until we perfected that one. Oatmeal raisin,, peanut butter, oatmeal chocolate chip; with nuts, without nuts. We baked up a storm. Every afternoon we baked cookies. But we had a peculiar routine we followed. We wouldn't eat any of the cookies until they were all baked, stacked on a plate, looking all homey with the kitchen cleaned up. Then, we'd sit down with a glass of milk and eat the whole batch. Sometimes we'd give a plate to Teresa, Cindy or Mark before we'd eat our share. But not until they were all baked. Teresa would invariably come in while we were baking to try to steal some cookies and Greg and I would chase her out of the kitchen. But she'd still manage to run off with a fair share of them before we were done. For some strange reason, having a completed batch of cookies before eating them was important to us. Maybe we thought it looked more like someone else had baked them for us. And the house would smell like cookies again. Baking cookies occupied a lot of our time; but it did keep us off the streets and out of trouble...for a little while anyway.
Teresa made it a game to see how many cookies she could steal. Teresa, as little as she was, could eat a horse. She never got full. And she never gained weight. I could look at food 50 yards away and I would gain 5 pounds. I had to work at not gaining weight. Teresa could eat from morning until night, and still be hungry for dinner, with nary a pound to be gained. Mark used to like to play a game with Teresa. He would get a tape measure and measure Teresa's belly. Then he would feed her whatever he could find in the refrigerator and cupboards, periodically re-measuring her belly to see how much it had grown. Cindy and I always thought this was a little creepy, but helped out in the game occasionally mostly out of morbid curiosity. We usually ran out of food, or time long before Teresa ran out of room. It was truly an amazing skill she possessed, and I was secretly envious. As she got older, Teresa gave up the championship eating contests that Mark imposed upon her. However, even to this day, she can eat whatever she wants and remains slim, trim and gorgeous without breaking a sweat.
The cooking stealing went on for some weeks. So one day, Greg and I made her a deal. We told her we'd bake her a special batch of cookies all her own; she could eat the whole batch. Just as long as she stopped stealing our cookies before they were done, and stayed out of the kitchen the entire time. Not one to pass up food (especially cookies) voluntarily, she agreed.
Now, I wouldn't say that Greg or I had a particularly mean streak; we didn't hold grudges and we were not generally malicious. Just terribly misguided at times. Like this time. We baked Teresa an entire batch of chocolate chip cookies with a "special" ingredient: Milk of Magnesia. We weren't sure how much to put in, so we started out with a little, and kept adding more. When the batter got too runny, we'd just add more flour. To make it extra "special", we sat her down at the table with her plate full of cookies and a glass of "milk"...mostly milk with some more Milk of Magnesia added in for good measure.
Teresa ate the entire batch without blinking, downed the milk and was outside playing before we knew it. But she was back inside pretty quickly for a bathroom break. She ran back outside, but was back in a few more minutes. This went on through dinner, and into the night. I called Greg after we went to bed to give him status updates of how many times Teresa had been to the bathroom. It was terribly mean and cruel in hindsight. Teresa was miserable, and since we shared a room, so was I during the night (didn't take that into consideration when we hatched our plan!). Neither one of us got much sleep. After a while I felt guilty about the whole thing, but not enough to confess my crime. I didn't tell Teresa what had happened until we were adults. But she never stole any more cookies after that either.

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Mom went back to the mental hospital many more times that year, always coming home for a few weeks or a few months at a time, and then ending up right back in the looney bin. It was especially difficult around holidays. Thanksgiving, Christmas, Mother's day and mom's birthday seemed to be the most stressful for her. By the end of the day or that weekend, she'd have checked herself back in to the hospital.
Cindy went back to cooking (albeit very reluctantly)since dad didn't hire Jean back. I think he kept expecting that each time mom came home, she would be "fixed". Thanksgiving rolled around, and this time mom was home. Ever since mom had her first "nervous breakdown" she never cooked again. So Cindy did, dad did, or later when I was older, I did.
Nana and Papa came over and fixed Thanksgiving dinner for us, with turkey, stuffing and all the fixings. I honestly don't ever remember my mother cooking Christmas or Thanksgiving dinner. Nana always came over early those morning to prepare the turkey, make the dressing (ALWAYS Mrs. Cubbison's dressing) and stuff the turkey. It was an event to watch her!
It was the day after Thanksgiving, Nana and Papa went home, and we were left to our own devices. Mom went to the beauty parlor to get her hair done. Her hair was a sight to behold. She would go to the beauty parlor once a week (if she was home) and have it all teased up into a ...well it looked like a bubble on her head; in fact Cindy and I would call her bubble head when she wasn't around. Mom's hair turned grey early in life, so by the time she was in her mid thirties, her hair was all silver. It was actually quite beautiful, if you could look beyond the bubble thing she had going on.
This particular year, dad put Cindy in charge of making the turkey soup, which was one of the very few traditions I can remember our family keeping. It involved boiling the turkey carcass until all the meat fell off (which now being a vegetarian in my adult life sounds particularly revolting), then adding vegetables and egg noddles. It was really more like a stew. Mom never made the turkey, but she almost always made the turkey soup. But this year, my father wanted to keep all the stress off mom, so Cindy got the job.
Cindy was a nervous cook back then. She had never really learned to cook, so it was especially stressful for her to be in charge of the after-Thanksgiving soup. Later in life she became quite a good cook, but it was a rough beginning!
So on this particular day, she threw Greg and I out of the kitchen, where we were of course baking our cookies, so she could have the space all to herself. Needless to say, this did not sit well with either one of us. So again, we hatched a particularly mischievous plan.
As Cindy prepared to boil the carcass, Greg and I were quite unceremoniously thrown out of the kitchen, chocolate chips in hand, into the hallway. A hallway that, unfortunately for Cindy (and later for us)gave us a straight shot to the stove top...
Yep, we did just what you might imagine young, really messed up kids would do in that situation. Every time Cindy had her back turned to us, we each took shots tossing chocolate chips into Cindy's already precarious soup. We thought it great fun until we tossed in that one chip too many and heard Cindy scream when she noticed her soup was brown. The screaming and ranting built to a feverish pitch until she got on the phone and called the beauty parlor where she proceeded to scream into the phone that she burned the soup! Greg and I slipped into the den at the back of the hallway laughing so hard we nearly peed our pants. My father finally came in the kitchen and tasted the soup. He didn't say anything except that Cindy should finish the soup and we would eat it burnt and all. And he insisted that Greg stay for dinner. I managed to choke down the first bowl (which I purposefully gave myself a miniscule portion). Still not saying a word, my dad filled my bowl 2 more times that night...full. Greg and I didn't think it was all that funny anymore.
That night pretty much ended our frenzied cookie making days. Up until then, Greg and I were strangely and fiercely protective of our cookie baking time. In hindsight,the cookies were just a symbol of something so much bigger. They temporarily filled a void that neither one of us had the emotional maturity or energy to voice out loud. We were both too consumed with maneuvering our lives at home, which seemed for all the world to resemble a fun house filled with mirrors that gave everyone on the outside looking in a twisted, distorted view of what life on the inside was like. Only it wasn't fun. We just hadn't figured out yet that it wasn't about the cookies.

The Smell of Home

Mom was coming home, again. She had been in and out of the mental hospital weeks at a time; only this time she had been away for several months. At first dad tried to get by giving us weekly chores to keep the house clean. I had to clean the bathrooms, Mark had to take care of the yard and Cindy had to do the cooking and some cleaning. We all took turns taking out the trash, and washing dishes. Teresa, well she was a charmer, and her charms were not lost on my father, who frequently let Teresa out of her chores on any given week. All she had to do was look cute and coy (which for her was not hard at all; for me would have taken an act of God to affect that look). She would bat those deep blue Elizabeth Taylor eyes, and wiggle her head just enough to make those ringlets wobble, and my dad would relent. She was his baby.

Most of our chores would be done on Saturdays. It was the only day we had to sleep in, but for some reason, dad insisted that we start our chores at the crack of dawn. For me, that was never really a problem, since my eyes popped open every day at 6:00 in the morning whether I wanted them to or not. To this day, I have never been able to break that pesky little habit. If we were not awake by 7:00, my father would march into our bedrooms (no knocking for him; it never seemed to bother him whether we were dressed or not. Since I slept naked, I made sure that never happened) and shake us awake. It worked pretty well for Mark and Teresa, but Cindy was a tougher nut to crack. Cindy LOVED to sleep in. Given the opportunity, she'd sleep until noon.

One Saturday morning, as I was cleaning the bathrooms, I was trying to empty the bathroom trash into the larger kitchen trash, which of course was overflowing. My father, standing in the kitchen, with his arms crossed in the manner of a drill Sargent (a role which he frequently assumed through the years)asked "Whose job was it to take out the trash this week?" He knew it was Cindy, and he knew I knew it was Cindy, but I didn't want to say it because I knew what was coming and I dreaded what he would make me do. He made me go upstairs and wake her up, or some facsimile thereof. Waking Cindy up was not an event; it was a process. She resisted the effort, however great or frequent to rouse her from slumber. She was like a bear who was woken up too soon from hibernation. If you got to close, she'd hit you. Only Cindy had a special way of punching that was hard to forget. She'd punch you in the arm with the knuckles of her fingers pushed out so it would hurt down to the bone.

On the first try, I just opened the door and yelled at her from a distance, then ran back downstairs to finish my chores. Of course, when 15 minutes had gone by, and no sign of Cindy was apparent, dad made me go back for another try. This time I would tip toe in, shake her and then run (or practically fall) downstairs so she wouldn't hurt me. This would go on for some time until my father would finally go up, open the door and rip the covers off of her bed. That usually worked pretty well.

On subsequent Saturday mornings, my dad adopted a different tactic. When he realized that Cindy was still sleeping and everyone else was working, he told me to pick up the kitchen trash and follow him. When we got upstairs, he took the trash can from me, marched in Cindy's room, yanked the covers off her and dumped the trash right on top of her. The stinky,smelly, wet, gross trash from all the food we had eaten that week. Cindy came off the bed so fast you'd think she'd had a catapult hidden underneath. I, of course would be halfway down the stairs in the blink of an eye (anything to avoid that punch). But my dad would stand his ground, arms crossed with a slight smile and tell her to take out the trash.

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After that, my dad decided to hire a woman named Jean, to do the housecleaning and the cooking. She would come in early in the mornings, make breakfast and send us off to school. And she would be there when we got home, with the house clean, laundry done, and linens changed. The house always smelled slightly like Pine Sol, and I loved it.

Jean believed that children should play after school, before doing their homework, "No sense in wasting good sunlight" she'd say, "You've been cooped up in that classroom all day". So as soon as we'd get home, she'd send us right back out again to play until dinner. But she insisted that we'd have to get all our homework done after dinner. Otherwise she'd make us do it the minute we got home from school the next day. Before sending us out to play, she'd look at me and say "Don't disappoint me". I made sure to get all my homework done, even if it meant doing it under the covers of my bed with a flashlight; which was known to happen on occasion. Sometimes, I would also do the next days assignments just in case.

While we were at school, Jean would always bake a batch of cookies, a pie or some kind of dessert for that night's dinner. But almost always she'd have fresh baked cookies somewhere around. When we'd ask for cookies before going outside, she'd shake her head no and counter "No one's going to say I was the one to spoil your appetite for dinner" and shoo us outside. But when I'd go back inside later to use the bathroom, she'd always have a couple of cookies set out on a plate at the kitchen bar for me with a glass of milk. With a wink, she'd tell me "You'd better not let me find out you were too full to eat your dinner". Most often Greg would come over after school, and he would get cookies and milk too. For some reason, Jean liked me (and Greg) and cut us a lot of slack, where she didn't with Mark, Cindy or even Teresa. Neither of my parents drank coffee. But Jim did, Nana and Papa did and so did Jean. Jean worked hard; in fact, I rarely saw her off her feet. But in the afternoons, I would find Jean with a cup of coffee, resting for a few minutes before working on dinner. The smell of coffee and fresh baked cookies smelled like Nana's house, and now, for the first time, it came to smell like home.

I loved Jean. She made the most interesting meals. Her cooking was special. Even ordinary food like meatloaf was an adventure. Her meatloaf had a perfectly round cooked egg in the center of her loaf. I asked her how she did that, but she told me "How stupid do I look? If I gave you all my secrets, you wouldn't need me anymore". I puzzled over the meatloaf mystery for a long time until I realized that she started out with a hard boiled egg! Even her cookies were different. She made the usual chocolate chip, peanut butter, and oatmeal raisin cookies. But there was always some special ingredient that made them taste different, better even.

The longer Jean was employed with us, the more time I wanted to spend with her. I started asking if I could watch her cook after school instead of going out to play. She's always send me outside with the admonition that "It's not right for a child to be cooped up all day". But I learned that if I snuck back in, she'd pretend that she didn't see me. After a while, I was staying inside with her until dinner, watching her cook, sometimes helping her cook, and always with a plate of cookies, baked just for me. Greg would come over after school, and she'd let him help in the kitchen as well.

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Mom came home and everything changed. She would sleep all day in her bedroom, with the shades pulled down and the curtains closed, and we would have to be quiet. When she awoke later in the afternoon, she'd come downstairs in her housecoat and mule slippers and stand in the hallway looking into the kitchen. Frequently she had been crying and was still sniffling when she appeared in the hallway. I'd be standing by the stove next to Jean. Her words would be all slurry, and her eyes at half mast, like she was still asleep. I was mad that she slept all day while Jean did all the work. "You sleep too much" I told her in an unkind voice. "It's not sleeping that's the problem" Jean muttered, too softly for mom to hear. Mom told me "Come give me a hug". Only, it wasn't the kind of "Come give me a hug because I love you so much" statement; it was more like the "Come give me a hug and prove that you love me" kind of statement. I didn't want to go near her. But I would feel Jean's hand in the small of my back pushing me towards mom. When I gave her the hug, she would say to me" Why can't you love me so I can get well? Why do you have to be so difficult?". Truth was, I didn't love her. I secretly despised her for being so weak and pathetic. I wanted her to be a mom. I didn't want to have to be the one to make her normal again. I wanted her to be like Jean, or Nana, or just someone I could respect, and who loved me back, and didn't blame me for everything. I was 11 years old. Was that too much to ask of my mom?

Jean would have dinner ready to be served when as soon as dad got home. Then she would leave. Once I asked Jean why she didn't eat with us, and she said "I have my own family to eat dinner with". I wanted her to stay. Dinner was not pleasant anymore with mom there, and I couldn't wait for it to be over. Mom complained about everything. Jean didn't clean the kitchen right, she didn't use the right cleaning agents in the bathroom, the laundry wasn't folded correctly. And worst of all, mom didn't like Jean's cooking. I kept asking Jean several times to stay and eat with us, and she would always decline. One Friday I asked if I could go home with her and eat dinner at her house; I could ride my bike home afterward so I wouldn't be any trouble and I'd even clean up all the dishes so she could rest. She looked at me long and hard with her hands on her hips. I was surprised then, when her eyes got wet (Jean was never the sentimental sort), she pulled me to her and gave me a short but hard hug. She immediately pushed me back and said "You have your own family to eat with" and turned away from me. But I heard her mumble "as hard as that is, God help you". I didn't ask her again.

Jean only lasted a couple of weeks after mom came home. Mom insisted that dad fire her. Jean did nothing right in mom's estimation. But mostly, I think she was jealous. So one day, when I got home from school, there was no Jean. There was no smell of coffee or fresh baked cookies or even Pine Sol. There was no smell at all. Mom was in bed, but would soon be up wandering the house in that half dopey, half drugged trance she perpetually stayed in these days.

Greg and I sat outside on the front porch, head in hands, wondering out loud where our next batch of cookies would come from; but silently wondering what home would look like from now on. And the thought scared us both.

Third Grade

My childhood seemed to enter the twilight zone sometime between the second and third grade. It was during this time that I first noticed my mother starting to act peculiar. And it was right after the third grade that I remember Greg and I first using the word crazy when talking about my mother.

My mother was always a nervous person, even in the best of times. I was always told that the reason she was so nervous was because of my heart condition. Amd when I got sick, she seemed to decompensate. If my brother or sisters got sick, I was sent off to Nana’s so I wouldn’t catch whatever bug they had. And if I did get sick, I was sent off to Nana’s to recuperate. For most of my early childhood, it seemed like I was always either in the hospital or at Nana’s. I would get pneumonia at the drop of a hat. It would start out as a simple cold. But every night, my mother would wake me up in the middle of the night, and bring me down to the dark kitchen. The only light on in the house would be the one over the stove. She would have put a pot of boiling water on the kitchen counter, into which she dropped several heaping tablespoons of Vicks vapor rub. She stood over me and held my head over the pot and covered it with a towel. The fumes were so strong that my eyes would burn and water and my lungs felt like they were on fire until I thought they would explode. It wasn’t until I coughed so violently that I gagged that she would let my head up. I could only go to bed after she rubbed enough vapor rub on my chest to cover a small army of children. I always felt worse after each treatment and dreaded the next night. I begged my mother not to use the Vicks again, but each night, after everyone was asleep, she would get me up and the cycle would begin again.

After several nights of this, I could barely breathe. My mother would become hysterical, wake my father and my parents would end up driving me to the hospital in the middle of the night where I was admitted with pneumonia. The pediatric ward at Huntington memorial hospital knew me and my parents well. We were there almost every other month for years. My cardiologist would have called ahead and the nurses would have an oxygen tent already set up for me. I would spend the next 2 weeks or so alone in that tent, save for the company of nurses. I became so close to one of the nurses that I missed her terribly when I went home. And I would feel guilty for sometimes secretly wishing that she were my mother.

And so it went, for years, in and out of hospitals with pneumonia. The doctors and nurses explained that my lungs were weak and probably always would be. After each admission, when I was ready to go home, I was sent to my grandparents to recover. I was told that my illness made my mother “too nervous” or I was just “too sick” to come home.

Sometime during the beginning of third grade, I had already been admitted several times with pneumonia, when I needed to have another cardiac catheterization to reassess my heart. After that, my parents decided to keep me out of school for the rest of the year. To most kids, that probably would have seemed like heaven. To me, it was like a prison sentence. I loved school. I loved my teachers, I loved the homework. I loved just the act of walking to school and the freedom it gave me. I was a total school nerd, before nerd was even a word. My parents hired a tutor, who came most days of the week. And I liked her very much, but it wasn’t the same.

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One day, on a weekday, my mother sent me out to the backyard to play. Everybody else was in school and my tutor wasn’t coming that day. Since most 7 year olds don’t plan bathroom breaks, I suddenly realized I had to go right then. So I ran to the back door and started to open it when my mother came to the door and shut it before I could get it open.

“Let me in, I have to go” I pleaded in a decibel range I hoped no one else would hear.

“No. I don’t want you in here” She yelled back at me in a tone I had never heard her use. “I need the rest”. I heard the lock click shut.

“No, let me in please. I have to go, real bad” Panic had now crept into my voice.

“Go away. I’m not letting you in until your father gets home” She spat back. It was late in the morning, no one else was around and my father wasn’t coming home until dinner. I promptly ran to the front door, only to find that locked as well. I ran back to the back door and pounded and yelled hoping she would let me in. I could see her through the window walking away.

I was confused, and horrified that I was being locked out of my own house, and I desperately had to pee. And the running back and forth didn’t help. So I did two things I had never done before. I wet my pants, and I started to cry. I sat down on the back porch steps and cried out of humiliation and anger and fear. I didn’t understand why my mother was acting like that.

There was a chain link fence between our house and Greg’s next door, and our back doors were directly opposite each other. Elaine from next door had seen the exchange and came out onto her back porch and asked me if I was alright. I was too embarrassed to stand up or turn around. I didn’t want her to see that I had soiled myself, or that I was crying.

But even in her drunken haze, she knew something was wrong. She came over to my yard, and grabbing my hand she staggered back to her house, me in tow. She made me take off my pants and underwear, and gave me Greg’s robe to wear while she washed my clothes. No one else was home, and I was grateful. Elaine was not an affectionate mother by any means. But for all her dysfunctions, she put her arms around me and tried reassuring me that nothing was my fault that day. But it sure felt like it was.

Later that day, when my father pulled up in the driveway, Elaine went out to talk with him. She had been waiting, and she was hopping mad. I didn’t hear all that was said, but pretty soon, my father came into Elaine’s house and told me to come home. As soon as I walked in, he ordered me up into my bedroom, and the yelling between my parents began, again.

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My mother really wanted another baby. My father told me later that she would begin to lose interest in us when we started walking and talking. My parents fought over it frequently, but after my younger sister, Teresa was born, my father was insistent. No more kids. And so even though she kept begging, he would dig his heels in, and all the while the arguing and screaming continued.

When my mother realized she wasn’t going to get pregnant anytime soon, she decided she wanted new furniture. Again, the arguing and screaming went on over new furniture. My mother was insistent that she wanted it but my father was just as insistent that there was nothing wrong with our furniture. My mother was relentless, and my father was just as stubborn. No furniture.

One day, just my mother and I were at home. I was sitting on the white leather couch doing my homework, when a man came to the house. My mother let him in and spoke to him as she gave him a tour of the house. I thought at first he was a friend, until he started loading up all our furniture onto the truck. My mother had decided the best way to get new furniture was to sell the old. Lock, stock and barrel. Everything went, including the drapes. By the end of the day, we had no beds, no tables, no chairs. The only thing left was that white leather couch. My mother collected the money, and the man drove away with all our furniture neatly loaded onto his truck.

When my father came home from work, the screaming began again. Only this time it was a conflagration. I had never seen him so mad. They yelled at each other long into the night, and for many nights thereafter. My mother argued that we needed new furniture, only this time she was right. We did in fact need furniture as now we had none. My father was so mad, he refused to buy any. Not even a bed. So for a while, we all slept on the floor, until my father gave in (or probably his back gave out) and bought us all mattresses. But that was it for a long time. My mother put up sheets over the windows and we somehow made due with no furniture. I pretended that I was a hippie, and that’s why I only had a mattress. But from that moment on, I never wanted to bring friends over to my house. I didn’t want to have to explain how my mother just up and sold our furniture one day, and why my father would let us live like that. As time went on, my mother’s mood became more erratic. One minute she would be dancing to music and the next suddenly fly into a rage over some unknown slight. Because I never knew which mood she would be in, from that time on when I walked home from school, I always did it alone.

My best friend Greg from next door would come over frequently, but since his mother was an alcoholic and his father, the reverend, was sleeping with his secretary, he understood better than anyone. His mother was almost always drunk and when his father was home they were constantly fighting. Greg and I were like brother and sister, united in a common bond…crazy mothers and distant or absent fathers. Our mothers were lost in their own illnesses and our fathers escaped (mine through work and his through his mistress), leaving us essentially orphaned and raising each other. It was like the blind leading the blind.

Because I missed almost an entire year of school, I had to test into the fourth grade before I was allowed back to school in the fall. I tested at sixth grade level. For the second time in my life, the school recommended that I skip a grade. I was ecstatic, because I had worked hard that year to show everyone that I wouldn’t “fall behind” as my mother was convinced I would. And yet again, my parents refused, ostensibly because they were afraid I “couldn’t handle the pressure”. I was outwardly angry with my parents because I thought it showed a lack of faith in my abilities. My only consolation was that I was happy to be back with my friends that I had known since kindergarten. As it turned out, my friends were my salvation in the years to come.

Somewhere in the fourth grade, I became sick again, only this time I had tonsillitis. I was admitted and had surgery several days later. From that point on, I don’t remember ever getting sick again with colds. The Vicks treatments stopped and I never went back to the hospital with pneumonia.

As an adult, I learned that I was actually quite allergic to Vicks. Each time I used it I began to wheeze and cough. Looking back, I have to wonder whether my mother used the Vicks intentionally as a way to get me into the hospital, so she wouldn’t have to deal with me. I know now, as a Physician Assistant this is called Munchausen by Proxy; a psychiatric disorder where a parent intentionally makes a child sick or fakes an illness in her child for secondary gain. By making me sick enough to require hospitalization it created the drama that my mother craved; and it gave her the excuse to get rid of me, eliminating the stress of having to care for me. I was the problem causing all her stress. If I had been a normal child, maybe she wouldn’t have acted so crazy. At least that was the message I got. Of all the lessons I learned during my third grade year, this lesson was what shaped my perception of myself and the world around me.