On the 4th of July, 2011, I was taken outside in a wheelchair with my mother and some friends. It was a very nice day. I practiced propelling myself moving the foot rests of my wheelchair out of the way and scooting myself forward.

I was in an uphill battle with atrophy. I needed to gain my strength back. My Physical Therapists were trying to get me back on my feet… Literally.

For about a month prior I worked on simply sitting up in a bed. I could do it, but it took a whole lot of effort. It needed to be easy again. I still was ballerina footed and my left hand in “the claw” position.

In occupational therapy I would try and fail to do simple tasks like roll a ball on the table towards my therapist using the back of my left hand. It was so frustrating because I was simply unable to do it at this point. I could with my right hand, but my left was stuck.

I feared that my hand would stay this way forever. I was given several other tasks in occupational therapy. I would try to handle cards with my left hand I would try and fail to shuffle. Another exercise I did was picking coins out of silly putty. This was incredibly difficult as well, but gave my left hand a task that I could work on anytime. I would practice this exercise in my hospital room a lot. I found out how messy and impossible it is to get silly putty out of fabrics. They took my silly putty away after a messy incident.

Everyday I would spend mostly in my wheelchair. If I had to use the bathroom, there were supports on the toilet so I could use it. I also had a bottle designed specifically to pee in, so I would often ask everyone to leave for a second while I peed into a bottle. I then would ask one of my friends to dump it in the toilet and rinse it. And someone would do it for me. That’s love right there! I had to pee all the time. I had unconditioned those muscles that held my bladder as well. I wet the bed a few times. Its better now, but I still have to pee quite frequently.

It was a very dark period in my life and I am so thankful for my mother, and for all of my amazing friends for keeping me out of a paded cell. I’m also thankful for MRSA giving me my own room, so a bunch of friends could crowd in and play games with me. I remember Lyndsay and Jenn being there the most. Thank you both so much. We’d play Rummy all the time… I think they’d let me win.

 

“I feel like a baby. But in a bad way. I can’t do anything on my own. I would give up if it wasn’t for all of the love”
-Cavin

I had a also psychological therapist at Mount Sinai, who was so sweet and brightened the uncertain abyss where me and my friends and family resided. Thank you, Holly. She asked me if I had any goals when I left the hospital. I couldn’t eat, so food was number one on my priorities over everything. I told her something like “I’m gonna get fat! Not just tubby. I’m talking orca fat!” She said that’s a very unusual goal, but she understood and saw the humor. She then asked me what my first meal was gonna be. I mouthed “sushi! And pork belly simmered in sake, rice syrup, and soy sauce with wasabi cream and cilantro. I also want some Unagi (fresh water eel)” She said that was a first as well. Usually people want a cheese burger. She told me that she would take me out to lunch when I was able to eat. I was not able to eat for my entire stay at Mount Sinai. I came back after I was able to eat to say hello and collect on lunch, but Holly had transfered to another place. You owe me lunch, Holly!

 

“I wanna get fat when I’m better. Gonna eat so much!!”
-Cavin

I also insisted to be in my wheelchair during the day until I went to bed. If I was to gain the strength to simply sit without sliding off of my chair, I needed to sit. I had trouble sitting up, but the chair had a seatbelt that I would wear, and I eventually was fine to sit in the chair. I never thought that it takes strength to sit, but it does… Not much, but I didn’t even have the strength to SIT at first. Nehal was my main PT (Physical Therapist). She had me attempting to do two handed planks. I started with knee planks. Which were so hard for me. I was incredibly weak after several months in a bed. So I did knee planks on a bed in my room, and I would scoot around in my wheelchair to regain strength and coordination in my legs. I could bear little to no weight on my right hip because I had fractured it, so in physical therapy I would do exercises that limited the weight I would support.

Nehal ordered a boot that is rigid and is used to keep the foot in its normal position. This was used like the splints on my wrist however I was only to use it in bed. The angle was adjustable so it was moved more and more until it was in its normal position. (Months from then)

I forget the name of my main occupational therapist. But she would help my wrist by making splints out of plastic that would hold my wrist a little further then it would go on its own. I would wear these splints all the time except when I was doing a task where the splint interfered or while bathing (which I needed assistance for).

I also learned how to make some sound through my vocal chords by plugging the hole of my tracheal tube opening and forcing air passed my stenosis to vibrate my vocal chords. This took A LOT of effort. The stenosis occluded my trachea a lot, so it was very hard to push any air through it.

I’d do this for a few minutes, and my face would turn bright red. I would sound like a zombie from Evil Dead. Speaking was too difficult to keep up, so I did it for entertainment purposes only. I wish I made a video that said “We are the things that were and shall be again!”

I began to deal cards and awkwardly attempt to shuffle them. Often times cards would go everywhere and I’d make my friends play 52 pickup. I’d try to use my left, as awful and uncoordinated as it was, as much as I could tolerate the frustration. I treated everything that I had the patience for as therapy. I had TV in my room, and I’d watch the food network even though I couldn’t eat. My mom was like “why on earth are you torturing yourself?” another friend said “it’s gotta be like watching porn after you’ve had your dick cut off!” Wow. I always liked watching food programs and I used to cook a lot. My mom said “This is Buddhist Monk training.” it’s kinda true. I guess I was conditioning myself to see others do what I could not.

Leroy is the name of my dog. I miss that dog!

Demon Talks to Leroy