Another Installment About Growing Up With Jarcho-Levin: AD

Okay what you have to understand is that up until a few years ago, we didn’t have a name or specific medical label for our condition. When I say “we” I am talking about those of us in the family with Jarcho-Levin:AD. That would be my father (the first), me, my brother, my second son and my third son. My second brother and my first son and my daughter are all unaffected. So although I didn’t grow up completely alone, I was the first female to have it. Now, my family of origin is a family of science-lovers. I wouldn’t call us nerds (at least my parents) because I can’t think of anything they really obsessed over. They are just science-loving people. My father has a degree in applied physics and my mother is a medical technologist and phlebotomist. I was raised with many off-beat and radical concepts – they both also being hippies – like Zen and social justice activism as a way of life, but information and knowledge was our core. Science, logic and rationale trumped everything in our household.

So when I was around 4 years old, my parents began taking me to a certain hospital that at the time was known for their research on disabilities. I have no idea what prompted it, other than most likely my parents scientific curiosity. I do, however, know what pushed it into the lengths that it went: the doctors. The doctors told my parents they could figure us out. Nobody said anything about cures or treatments, obviously there is no cure or treatment for this kind of genetic disorder, but the doctors fed my parents respect of science and belief in the nobility of medicine and the “payoff” was going to be knowledge.  To this day I wonder, as well, how much intimidation was involved. My father is not a firebrand, not brave, he isn’t the type to feed his own ire and let loose his emotions. Its the downside to being a logic-worshiping family, I suppose, but my father is also a product of his upbringing in some ways as well; he was raised in an environment where he was ridiculed for his difference, mocked, teased, and humiliated on a regular basis (until college, he says) so my father isn’t the type to stand up against someone who puts on the Big Dick In Charge act. If that Big Dick is affiliated with science? No contest.

At least in the beginning.

So this famous research hospital convinced my parents to subject ourselves to a barrage of study. Mostly, of course, that was me. Why me? Because I was a wee child and they could study my growth pattern. So they said.

So, for the next four years, I was an object of medical study.

I will tell you three instances of what happened during that study. I don’t remember much else, and neither do my parents. The few times I brought the subject up, they had difficulty recalling any details of those four years. My parents twist their faces into strained concentration and say “I don’t really remember… was it only one week?” and specific events during those four years bring “Did that really happen?”  while they try to find a shinier and brighter side of it all “remember we would take you to Baskin-Robbins afterwards?”

I know it isn’t a real questioning of my memory, but a distancing of their own culpability. Of course, I do not blame them, but I am a mother, and I know my absolution is little comfort.   The study happened and we all know that.

In the beginning, the doctors convinced my parents to leave me in their charge for a week. Maybe two weeks, I can’t remember. What I do remember is bits and pieces, obviously.  I was four. I had been living with my dad and (step)mom for barely a year when this began. They tried to explain to me that it was temporary, that they would come visit me every day and I would be fine but, you know… four years old.

My bed was in a huge auditorium sized room with at least twenty other beds and cribs all in the same “room”. I remember it was huge and weird because the walls were wood panelling halfway up but the doors were heavy steel.  The bathrooms were standard public style bathrooms, through a door on the right at the end of the room but on the left side was where all the medical people went in and out. Sometimes they came out to be with you, give you games, food, take your vitals, but sometimes they came out to take you behind the big steel door with them. This wasn’t ominous per se, because everyone who went back there came back out, of course. At least the kids I was familiar with. But behind that door, you never knew where they were going to take you. Every day, it seemed I went to a different place. So I dreaded being called behind that door.

Let me tell you why.

One time they called me behind the door. I ws taken to a standard medical exam room. I was stripped and robed and told to lie down on the table. Then whoever brought me in left. After a few seconds of waiting by myself, (hell maybe someone was in the room but i don’t remember them speaking to me) a line of people came filing in to stand around the table I was lying on and look at me. They all wore surgical face masks and caps and gowns. All I could see were eyes. and gloves. The masks were talking to each other but I couldn’t understand them at all. Their muffled speech made no sense to me at all. Someone else was talking to me, a woman, from behind all the masked people and she told me to hold still. One of masked people grabbed my arm and jabbering his muffled dialogue all the while stretched my arm out and lifted up a needle to put in it.

I freaked.

I remember, very clearly, that eventually they got what they wanted (they were drawing blood) by having three people hold me down while the main mask screamed his muffled words at me. Of course I watched that needle go into my vein and felt it so sharp I thought they were trying to kill me. I screamed, I cried, I howled bloody murder. All the while the main mask was screaming right back, and the woman behind them kept chanting “hold still! hold still! It’ll hurt more if you keep moving!”  Eventually someone got the bright idea to terrify me: they said “If you don’t hold still we’ll do it again”

I held still after that. But I cried so hard I couldn’t even tell my parents what happened when they came to visit.

Another time, they called me behind the door. I asked if I was getting a shot. The nurse was irritable and told me “no, you never got a shot int he first place! Besides, you’re just getting an x-ray!”

Ah the x-rays.  Frankly its a wonder I have gotten pregnant so many times from all the x-rays I’ve been given. We’ve got quite a few in my parents house. I have a set myself too. My x-rays are probably floating all over the country from hospital to hospital in some dusty old box of crap nobody wants to open because of  HIPPA.

So x-rays weren’t so bad. Except you had to be naked. And x-ray machines at that time were half the size of the room and made entirely of metal. Nice freezing cold metal. Also, there were times they wanted x-rays from angles I was not capable of complying with, so I’d be strapped in and the machine rotated until they got what they wanted.  Not so bad. Just tedious. You had to hold your breath for a while too. But x-ray techs were fairly nice guys and nurses were happy that I wasn’t screaming or crying so usually after the x-rays we were done and I could go back to the big room of beds.

Like I said, there were a lot of other kids there. They were there for many different reasons. Some kids were sick and were there to get better. They didn’t do much except sit in bed, get visited by the nurses and occasionally go through the door.

But some kids were a different kind of sick.

I made a friend in that room.  A little boy, I think his name was Tommy, and he was bald. I asked him  and he told me because he was sick. I think Tommy must have been a lot older than me, maybe seven or eight, but we quickly became friends because we liked the same things: cars that go fast and batman. Most times Tommy couldn’t get out of his bed so I’d bring things to him and sit on his bed. Sometimes he’d ask me to just play on the floor next to him because he was tired. I never asked much about his sickness. But I remember the day he was gone.

Children disappearing wasn’t unusual. I’d notice kids missing before. Sometimes the answer was “oh she got better so she went home” and sometimes the answer was “his treatment was done so he went home” every now and then it was “he’s in another part of the hospital now, he’ll be going home later”

Tommy was the first time they didn’t mention “home”. “He’s gone” was all they told me. I thought they meant he went behind the door. I waited for him to come back out of the door.  When bedtime came, I asked again; no one stayed behind the door after bedtime. “he’s gone, honey” was all the said. So I went to bed not understanding where he was.

I think I dreamed he came back. He was not in his bed, he was walking. His face was bright and ruddy, like he’d been running and he came in holding his mother’s hand. He ran to me and hugged me. It felt so good to hug him. We played on the floor and ran around the beds in the room.

Then I woke up and he still was gone. My parents came to visit me and I asked them when Tommy was coming back. My mom started crying and couldn’t speak. My father finally told me. I didn’t understand what “dead’ meant. But I knew by my father’s tone that Tommy wasn’t coming back. Ever. So I cried. And I believed the door was why he was gone forever. I hadn’t seen him go through it, but I knew that door had swallowed my friend up and wasn’t ever giving him back.


There were other memories of that study. Other memories of that hospital stay. Maybe not nice memories, but not so bad ones. The time I got my blood drawn and didn’t even notice because they put me in the x-ray room on a blanket and a nurse talked to me about my favorite books while the phlebotomist did the draw on the other side of me. They gave me a lollipop for that.

I remember having other friends too. I don’t remember their names and it seemed like no one stayed as long as I did but I did have other children to play with. I remember getting in trouble all the time because after lights out, I would tell funny stories to all the other kids from my bed whenever the nurse left the room. We tried to laugh quietly but it never worked: she’d hear us and come back in to shush us all. Didn’t take long for her to figure out it was me every night. One day a nurse I liked very much made mention of my stories. She looked at me smiling and told me I was making the other nurses mad so I needed to tell the stories quieter.

After Tommy was gone, I remember drawing pictures over and over. I always drew the same picture: my parents coming to get me. Sometimes I drew my dad and my step-mom. Sometimes I drew my biological mother. Sometimes I drew all three of them.

Sometimes I drew Tommy going home with me.


2 thoughts on “Another Installment About Growing Up With Jarcho-Levin: AD

  1. This is heartbreaking. It’s the kind of thing you want to stop reading because you don’t want to acknowledge that it really happened, but you can’t. Thank you for sharing what I can only describe as a tragic experience.

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