I'm not entirely sure what it was about softball, but I was the one kid no one wanted on the team. My parents donated money and were the first aid team, so I was placed on it as a courtesy. My Mom always overdid it when it was our turn for snacks, as per the unspoken code: the worse the player the better the snacks. It wasn’t that I didn’t like it, or didn’t try, so when my Dad, always the athlete, asked what was wrong, coach would comment, "It's such a shame she has a spaghetti arm."
It happened the day I had just come home from my last check up with the orthopedist. My Mom told me to go out and play till dinner time with my childhood-best-friend, Tristan. His Dad worked for Mattel, so he owned every kind of toy. Of course, I never got to ride in his street racer version of my Power-Wheels Barbie Jeep, so I got his Razor Scooter.
So, then it really wasn’t my fault when I fell. Snap. Crunch.
My Dad ran out and scooped me into his truck and drove me to the local ER. I hoped for the same friendly face, Dr. Neilson to be waiting outside for me, my dreamboat orthopedist. My Dad called ahead to the ER charge nurse, telling her we were en-route. Now by no means was this skipping the line, but I was THE doctors’ daughter. My Dad worked downstairs in the Pediatrics Department, and my Mom ran the Labor and Delivery Department upstairs. Because of their standing within the hospital, they were granted special privileges when it came to their kids, so we never went anywhere else.
"Dennis, why don't you take Katie to Children's?" the Charge nurse asked, exasperated. I was just there throwing up blood last month. Maybe in an act of spite or some cruel twist of fate, Charge sent Dr. Stuart to meet us outside the ER. A man no more than 5'4" with the nose of a gargoyle, coke bottle glasses, a slimy voice, and the stature of the hunchback of Notre Dame approached us.
"Hi there, Katie!” he squelched. “I work with Dr. Neilson, but he has the night off. Mind if I see if I can help now?" I hid behind my Dad’s leg, sandwiched between him and his 4x4 red truck, as I held out my folded accordion of an arm. Dr. Stuart just gaped at my Dad who shrugged and pushed me towards him.
While my Dad parked, Dr. Stuart walked me through the teddy bear adorned pediatric wing to the trauma bay, where I don’t think the tiny specks of red on the floor were part of the tile. This side of the ER moved much faster, people buzzed in and out of the room, and amidst the organized chaos someone told me I would be feeling sleepy soon after a sharp pinch.
"When do I get to pick the color of my cast?" I asked out loud.
No one answered, but as I slowly closed my eyes, I overheard Dr. Stuart talking to my Dad, sighing and mumbling, ‘one in a million type of break.’
I awoke in more pain than when they knocked me out. Both my parents looked bad, emotionally somewhere between a state of despair and disbelief. They sat to the right of my bed and to see them I had to look over what looked like a giant marshmallow with a big X-shaped cut through the top, that had swallowed my arm. Seeing I was awake, my Mom held back tears, while my Dad magically produced a stuffed black lab stuffed for me to snuggle. Dr. Stuart came in, looking no better than the rest of us could at 2am, with news no parent wants to hear.
"We think we can save her arm. She needs to come back in a week, or when the swelling subsides. We can’t operate till then, so I’ll use that time to make sure everything is ready."
Next thing I know, the sun was coming up and hitting my back still. I was weak from the pain in my shoulder and the morphine made me throw up all over the yard. Attempting to explain, my Dad a man of few words said,
"Katie, for Dr. Stuart to help your arm he had to hurt your shoulder. Remember the first time I was able to fix your arm? Well, it was hard to fix this time. Until you can go to the OR they made you this special marshmallow cast, but when they put it on, your shoulder popped out. Now, they were able to fix your shoulder, but that’s why its sore. It's happened before when you were a baby, so you may not remember.” My Dad took my left hand and held it, “But with your arm Katie, they are going to have to try again on Saturday."
My Dad was trying to tell his Daddy’s Little Girl that I may not have an arm come Saturday afternoon. It was Tuesday.
It was still dark when my Mom woke me up Saturday morning. We had talked all week about what today would be like, and I had set out my Barry Manilow CD on the nightstand the night before. Surgery in Vegas is a little bit different than anywhere else in the country: there's style. Every operating room had a Bose stereo surround sound system, because apparently what music you played made you a better surgeon. So, Dr. Stuart would listen to what my parents did.
I was put on a stretcher and wheeled down to the white-tiled operating room by my Mom and a fully-geared team of nurses. Dr. Stuart and the other nurses were waiting for me. I proudly held up the CD case, and the nurses tried to muffle their laughter. My Mom just smiled, and Dr. Stuart had a nurse start up the CD before telling me to count backwards as the gas started. I think I made it to about 70 before…
“Liz, the inside of her arm looks like soup,” Dr. Stuart gasped. My Mom had to see it to believe it. I imagine they even turned off the music to focus. At least, this description was more appetizing time than uncooked spaghetti. At most, they were able to save my arm.
Surgery couldn’t save everything though, and breaking my arm seemed to be the straw that broke my parents. Dad started sleeping on the couch, yet at the time I was in my own little world, nearly oblivious to their failing marriage. Until one day, I was playing videogames, or trying to, when I heard hysterical crying,
"YOU SON OF A BITCH!" Mom shouted, throwing a chair over the second-floor landing. It bounced through the downstairs windows. Dad ducked, his apologies going unheard as Mom trashed the bedroom. As more unfamiliar expletives flowed, he called Christine, our interior decorator and my best friend’s mom, to come and get me.
After a week’s worth of watching Harry Potter with Christine, Mom didn't live in the same house anymore. By the time I got my cast changed a third time, my Mom and I had moved across town into a gated community, with explicit instructions to the guard: no Dad allowed.
When I finally graduated to a smaller cast, my Mom came home and told me that I couldn't see Dad anymore. I remember asking why, and I’ll always remember her answer,
"Your Dad got some papers that said he didn’t want to be your Dad anymore. I was scared. He brought his gun, flashed it at me, and forced me to sign the papers."
I broke a lot of things in my life, my teeth and the growth plate in my knee to name a few, once my arm healed. But, my legs and arms never stopped hurting. Everything hurt.
College rolled around, and I ended up in Boston, the medical mecca of the world. I began to piece together all the issues. I finally realized I needed to see someone because I had been told on three separate occasions, by three separate people, “You could have died.” -I’d take spaghetti comments any day over that. - Which makes you wonder how you’ve made it so long, and according to my Mom, a geneticist could answer that. Of course, I had researched, so I had some idea what was wrong, and that’s how I found myself in Dr. Milunksy’s office, telling him about my first symptoms.
My aunt always told me of the time my brother and I dislocated both of our shoulders when she went to pick us up out of the tub as toddlers. That seemed enough for him, and after a few more questions Dr. Milunsky quantified my life in one sentence, "You had a 90% chance of no surviving birth, yet here you are." I don’t remember my reply, but I remember thinking: My Dad is sick. My brother is sick. Now I’m sick.
"Well, I have a diagnosis for you. Ehlers Danlos Syndrome, Hypermobility Type 3. Your father had it, and his father likely has some variant based off your family history. Your brother needs to schedule a screening visit since its genetic. You should really let your father know too."
So, I wrote my Dad a letter, letting him know I’m alive, and in one piece. However, my diagnosis just didn’t stop there, the list is longer than the years that I had my Dad.
Ehlers Danlos Syndrome Hypermobility Type. Endometriosis Stage IV. Postural Orthostatic Tachycardia Syndrome. Dysautonomia. Chronic Fatigue Syndrome. Gastroparesis.
These are just the major conditions I can fit on my medical alert bracelet, the other 36 don’t have room. So even though my Dad left before things turned ugly, I guess I still always have a little piece of him. Exactly, 23 little chromatic pieces of him. What else would you expect from Daddy’s Little Gumby?