LAUGHING AT MY NIGHTMARE

My brother occasionally makes really loud, obnoxious noises when we’re out in public because people look over and assume it was me.

I wrote the first official sentence of my book this morning on the beach. Let me know what you think!

“I fall asleep every single night hoping that my lungs don’t give up on me while I dream.”

Nothing’s gonna change that hopeless feeling I get when you say you understand, and I know you can’t!

Step 1: Dad lifts me from wheelchair to changing table he made for our bathroom. (It’s really just a floor cabinet with a soft pad on top.)
Step 2: Dad pulls my shorts and boxers off.
Step 3: Dad lifts me from changing table to toilet and straps me into special backrest. Dad leaves bathroom.
Step 4: I pewp.
Step 5: I yell “DONE!” when I’m done, sometimes I sing it.
Step 6: Dad lifts me back on to changing table.
Step 7: Dad wipes my ass with a baby wipe while I pretend to have an ounce of dignity. (I do btw)
Step 8: Dad redresses me and puts me back in my chair.

Well, glad we got that out of the way!

Ok so it’s time for me to get serious about this book (in two days, once I’m home from the beach). I was wondering if you guys could help me brainstorm more things I can write about that wont be boring to read in a book. Obviously, none of you will be able to suggest personal things like, “the other time you fell out of your wheelchair,” but if you were reading an inspirational book about my life, what kind of things would you want to read about? Ideas can be specific or broad, just don’t be shy! Thanks in advance for your help!

Shane

The parents are excited about my book, especially my dad. Life is good. Also, I will reply to all your messages when I get back from the beach next weekend because the internet here costs money and typing out responses on my droid x is no fun haha.

I’ve decided I’m going to tell my parents about my book and my tumblr tonight.

My family and I leave tomorrow for a week in Ocean City, Maryland.

I am super excited. I absolutely love the beach, which is kind of odd I guess, since I can’t really do anything on the actual beach. My dad bought a special manual wheelchair for on the sand, so I sit in that, get pushed by someone to wherever we setup our towels and stuff in the sand, and I basically just chill there watching my brother play in the ocean. I would be lying if told you I am completely content just watching everyone else in the ocean, but I have been an observer my entire life, and I honestly enjoy it. I can go in the ocean if someone holds me, but that is kind of extremely difficult for whoever is holding me because of the waves, not to mention really embarrassing (I know I need to get over it, but let your mom or dad carry you like a baby down to the ocean and dunk you in the ocean and you’ll understand why it’s embarrassing).

When I get bored watching everyone in the ocean, I like to lie out on a towel to tan my sexy body. I used to not even take my shirt off at the beach, but I have given up the mindset that girls will come up and talk to me just because my shirt is on. I figure, if my body repulses people, those people aren’t meant to be my friends anyway.

We always make sure that our hotel or condo has a pool because that is where I have the most fun at the beach. I can’t swim by myself, but my dad carries me into the pool, which works out great. I tell my dad to put me under the water, and when he sees bubbles, he knows that’s the signal that I am running out of oxygen. He also throws me away from his body sometimes, and walks over to pull me up before I drown. I love being underwater because gravity is not working so hard against me and I can move my limbs much more freely than when I’m in my chair. It’s always hilarious to see the terrified facial expressions on the other people at the pool as they watch a severely disabled kid get carried into the pool and then thrown from his carrier’s hands.

I also really enjoy the boardwalk and eating out at restaurants and just spending time with the family. It’s going to be awesome. I don’t really have a conclusion.

(Also, I’m going to put the link for my dad’s book on here one more time later tonight. Feel free to rape the reblog button.)

My entire life has been an uphill battle, but that’s fine with me because it makes it easier to balance my head. :D

I absolutely hate mosquitoes because 95% of the time I can’t reach wherever they are on my body, so I either have to just deal with them biting me or constantly ask people to swat them off me.

How do you guys think I should organize my book? I can’t decide between the classic style with chapters or making it more like a collection of stories with commentary in between. Do you think I would have any chance of getting published if it was like an intro and then all these random stories i’ve been posting?

When I was in 11th grade, I signed up for dual-enrollment classes at the local community college. I had to take two placement tests, reading and writing, before they would let me sign up for Intro to Psychology, and I was very nervous because these were COLLEGE placement tests and I was only in 11th grade. I went to take the tests, and was awe-struck by how easy they were.

Here is a sample question from the test:

Which sentence uses a period correctly?

A. I. Like. To. Eat. Pizza…

B. I like to eat pizza.

C. Pick B

D. Seriously, B is the correct answer and you should pick it.

I finished the tests and printed out the results; I got a 100% on the writing and a 98% on the reading because the story about salmon migration patterns made me want to break the testing computer with my face.

Then, I had to take the test results to an old woman at her desk on the other side of the room so she could review my scores and tell me if I could sign up for the class I wanted. I drove over and awkwardly handed her the paper because I can’t really hand people things; I just kind of push them off my lap. She took it and said to me as if I was a toddler that had just used an adult toilet for the first time, “Ok honey let’s see how you did.”

Her face instantly changed to astonishment and she literally said, “WOW, I didn’t expect this!”

“Uhh what?” was my reply. Was she joking? The salmon I read about could have passed those tests.

Then she realized how rude she had sounded and quickly added, “We just don’t usually get scores like this! Congratulations!” Again, it felt like she was congratulating me for pooping by myself.

I know my body looks fucked up, but I honestly feel like there is no physical indication that would lead people to think I’m mentally challenged, and scenarios like the above are funny, but incredibly annoying.

If I ever get famous I am going to try to change the assumptions most people have about people in wheelchairs.

CONTINUED…

I came to peace with the idea of a feeding tube being a part of my life, but I wasn’t excited about it by any means. In my mind, getting a feeding tube would greatly diminish my freedom to do what I wanted, because I would be forced to adopt some type of overnight feeding schedule when I would be hooked to the feeding machine. Then there is the fact that feeding tubes are just plain creepy looking. I found this picture online before the surgery and it became imprinted in my mind.

I had this warped idea that I sort of looked like a normal person and that this tube sticking out of my stomach was going to turn me into someone that totally repulsed other people. You have to admit, that looks pretty disgusting.

Speaking of disgusting, when I was in like 5th grade, I went to a week-long camp for kids who suffer from muscular dystrophy (I’ll write a separate post about that sometime). One of the kids in my cabin had a feeding tube, and back then, it scared the shit out of me. While we were sleeping one night, I was woken up by some of the counselors in our cabin making a fuss around this kid’s bed. I looked over, and to my horror, his stomach juices were fucking leaking out of the feeding tube. Somehow his tube had come disconnected from the machine and now formula and stomach acid were pouring out on to the bed. I’m pretty sure I have some deep-rooted scarring from that incident.

So I had that pleasant memory to contemplate during the hour long drive down to Dupont Hospital the day before the surgery was scheduled to take place. At this point I just wanted to get the surgery done with so I could return to enjoying my summer. My friends and family had convinced me that while it would be different, a tube sticking out of my stomach was not going to ruin my entire life.

My dad and I arrived at the hospital and made our way to the pre-surgical ward where I was scheduled to meet the surgeon that would be doing the operation. We had no idea how much of a curveball life was about to throw us. First, an anesthesiologist with a heavy Russian accent came into the room and told us she would be in charge of putting me to sleep and monitoring my condition during the operation. Then she said that there were some very serious issues we had to discuss before deciding to go through with the procedure. My dad and I both looked at each other with the same “What the fuck is she talking about?” look on our faces. We were under the impression that this surgery was no big deal and that these little pre-surgical meetings were just a formality.

The Russian anesthesiologist, who had the bedside manners of a dead cow, told me in a very solemn tone that they would have to put a breathing tube down my throat to keep me alive during the surgery, and because of my weak lung muscles, there was a very real chance that when they tried to remove the breathing tube after the operation, my lungs would collapse and essentially I would die. It was such a slap in the face that I almost wanted to argue with her and tell her that I would be fine, but she just continued by telling me that if they felt my lungs would not be able to support themselves, they might have to leave the breathing tube in, “for an extended period of time or even permanently.”

Seriously, what the fuck? I already had made plans for the day after my surgery, because the doctors that urged me to get it made it seem like it everybody got feeding tubes and it was no big deal. Now, another doctor was telling me that there was a good chance I would either die or become dependent on life support during this surgery. She ended by telling us that we needed to go home and strongly weigh our options before deciding what we wanted to do. My dad, beginning to get angry by her lack of human emotions, told her that the surgery was already scheduled for tomorrow and questioned why we were not told this information much sooner. Her response was basically a reiteration of her original point as well as hinting that the right decision was to not do the surgery.

We sat there in disbelief and confusion as the anesthesiologist left and the surgeon walked into the room. The surgeon was much cooler and I liked him as a person right off the bat. He kind of joked around about the anesthesiologist being creepy with us, which made me feel much better about the entire ordeal. My dad put me on the examination table and the surgeon started poking around my stomach and ribs, while explaining to us how he was planning to do the surgery. Out of nowhere he became very serious and told us that because of the way my body was shaped and the position of my stomach, there was a chance that they would not be able to place the feeding tube correctly. He went on to say that while the anesthesiologist might have been unpleasant about the situation, she was correct about everything she had told us. Lastly, he explained that my doctors were rushing things by telling me I needed the feeding tube right away. He said, “They are not the ones who have to live with themselves if something goes wrong on the operating table.”

We were sent home by the surgeon with the same message that the anesthesiologist had given us, to strongly reconsider the feeding tube surgery. My dad and I basically spent the entire ride home trying to make sense of the entire situation. I probably would have lost my mind had it not been for the McDonald’s Sweet Tea I drank to soothe my nerves.

After that day at the hospital my doctors and the surgical staff got into an e-mail battle with both sides trying to convince each other that they were right. There was supposed to be a telephone conference between all of us last August to decide what to do, but that never happened because of a simple scheduling problem with all of the doctors.  The doctor that had originally told me I needed a feeding tube has since retired, and made no attempt to resolve the situation or even contact us before she left. In fact, we haven’t heard from any of those doctors or the surgical team since last summer.

Today, I still weigh about 50 pounds. I don’t have a feeding tube and I’m not planning on having one anytime soon. I still drink those expensive milkshakes as often as I can, but my body just refuses to gain weight. I’m pretty much at the point where I don’t know what to do because I’m not about to go have a surgery when the surgical team themselves advised me against it.

On a positive note, it is much easier for my parents to lift me since I don’t weigh that much. Hooray!

1. Make a funny GIF that gets millions of notes.

2. Film a video of me going through a McDonald’s drive through in my wheelchair while pulling my brother behind me in a wagon.

3. Post said video on youtube and get a million views.

4. Finish Feeding Tube post.

5. Write more posts.

6. Rent Harry Potter #7 pt 1, watch it, then go see pt 2.

7. Celebrate with my dad when his book is finally officially released for sale.

8. Continue to get really sunburned so it continues to bronze over and make me look beautiful.

9. Find Hope Solo’s house and ask her to marry me.

10. Drink snapple until I vomit.

“The only thing I like about you is you always have leftover food for me to eat” - my brother

By now you know that I only weigh about 50 pounds, which is about 22.7 kg for all of you who use the silly metric system. If you are having a tough time visualizing a 50-pound, 19-year-old, go back a few pages and look at some of my pictures (the one with the traffic cone on my head shows my weight the best). If you don’t feel like doing that, just imagine Gollum from Lord of the Rings, or Dobby from Harry Potter; my body has similar characteristics of their bodies. I know I must look insanely malnourished because little kids tend to ask me what is wrong with my arms before they ask about the wheelchair. However, I am not malnourished at all. I eat three meals a day, with snacks in between, and still my body just refuses to pack on the pounds. Let me explain…

The most I ever weighed was 63 pounds, which was back in 11th grade. Then I broke my femur and had to stay in a hospital bed for three weeks because I couldn’t sit in my chair with the unnecessarily huge cast they put on my entire right leg. During this time it was really difficult to eat; you should begin to notice that doing anything outside the perfectly situated supports of my wheelchair is very difficult, actually, impossible.  I couldn’t safely chew and swallow food while lying propped up in the hospital bed. My mom started grinding up my food in a blender to make it easier to chew, which was absolutely disgusting, especially the ground up McDonald’s cheeseburgers. I just threw up in my mouth thinking about it.

Needless to say I lost some weight during those obnoxious weeks while I was stuck in bed. I might have gained some weight back once I was recovered, but then in my senior year of high school, I got sick during Thanksgiving break and remained sick straight through until Christmas. A few days after Christmas I gave in and allowed my parents to take me to the hospital because I pretty much couldn’t breathe. I was admitted with pneumonia, but once again God/Luck/Fate/Science/Life was on my side and I got better and was released four days later. Unfortunately, I lost eight or nine more pounds during this time, taking me down to about 47 pounds. Not good.

When I went to my yearly checkups that spring at DuPont Hospital, my doctors were not at all happy with my weight. One of my doctors showed me a graph of my weight distributed over time, speaking to me like a child and explaining that the sudden drop off in weight was not a good thing. “What do you think we need to do about this?” she said in a patronizing voice that made me want to throw myself out of my chair. “….I don’t know, I’ll just try harder to eat more I guess,” I desperately said, as I began to feel the tears welling up in my eyes; I knew what was coming next.

“I think it’s time we think about a feeding tube. You’re going to need one eventually. We need to do the surgery while you’re healthy, before it’s too late.” The condescending tone of her voice made this statement about 1000 times worse.

I have never openly cried in front of other people since I was a little kid, but it felt like my whole life was crashing down on top of me. Everything was happening too fast; I was about to graduate high school. The last thing I needed was a huge, life-changing surgery that would effectively change the way I had to live. My doctors and the interns that follow the doctors into every room stood there in silent, awkward disbelief and watched as I put my head down and let the flow of tears fall on to my lap. The thought of having a hole in my stomach and being attached to a bag of nutritional formula every night was the ultimate symbol of losing the fight against my disease, at least in my mind. I couldn’t formulate a single rational thought, all I could think was “NO, I don’t need a feeding tube, not yet.”

I felt like the world’s biggest pussy, and there was a really hot intern in the room, which made it all the more embarrassing. Almost immediately I made a decision that crying and bitching was not going to get me anywhere, and as badly as I wanted to scream and never return to that hospital ever again, I calmed myself and listened to the doctors as they explained the feeding tube procedure and what we had to do to get it scheduled before I started college.

We scheduled the surgery for the middle of the summer. Meanwhile, I tried to gain weight on my own, reasoning that if I could show my doctors that I could get fat by myself, I could delay the surgery a while longer. I found these super-caloric milkshake mixes called ScandiShakes that could only be ordered online for a very expensive price. My family and friends and the people at my church generously rallied behind this idea of mine and helped my parents purchase a bunch of cases. I started drinking two of these 800-calorie milkshakes a day. ScandiShakes are extremely thick and make me want to kill myself every time I finish one, but they are also pretty legit; I gained about three pounds using these shakes, but to my dismay, it was not enough weight to put off the feeding tube.

People always ask me why I don’t just eat more. I wish it were that easy. If you read my post about my jaw muscles getting raped by my disease, you will understand that I get tired after only a few minutes of chewing these days. I have to use actual energy to chew, so when I eat, my body is burning calories faster than I can shovel it in. I began to accept that the ScandiShakes were not going to be a miracle solution, and after having some discussions with my friends and family, I came to peace with the fact that a feeding tube was in my best interest.

TO BE CONTINUED…

I have run out of fucks to give.

It occurred to me tonight that I have never once utilized the back pockets of my pants/shorts. I know what I’m doing tomorrow!

I told my brother about my tumblr and my book yesterday, not quite knowing what to expect. His response: “If you need any pictures of my penis for the book, just ask any girl at school.”

I can’t stop watching Weeds.

I would be long gone by now, had it not been for the Spinal Fusion surgery I had when I was seven. It was a very difficult, yet important time in my life, and it is kind of interesting so keep reading!

Since my muscles have been slowly deteriorating from the time when I was a little kid, my spine started to curve when I was very young. Basically, the muscles in my trunk, including the muscles that surround my spine, were not strong enough to keep my spine straight. Scoliosis (curvature of the spine) is very prevalent among people with my disease, which if you have forgotten is called SMA (Spinal Muscular Atrophy… get it!?). 

When it comes to scoliosis, my spine was a champion. Refusing to take his time and gradually curve like most spines affected by scoliosis, my spine wanted to curve as fast as he possibly could. My spine is an asshole. When I went to my yearly checkup at Dupont Hospital in Delaware at the age of six, my doctors were extremely alarmed by how curved my back was becoming. I sat with a ridiculous slouch because I had to compensate for the twisting of my spine in order to hold my head up. When normal people have scoliosis, it is usually only a few degrees of curvature. I kid you not, my spine was slightly more S-shaped than this:

At that yearly check-up, my doctors calmly explained to my parents that the back brace I had been wearing for a few years was failing about as hard as a back brace can fail. You might notice that the top part of the spine in the picture above appears to be intruding on the right lung’s personal space zone. My spine was slamming into my right ribcage with as much force as an asshole spine can muster. The doctors told us that was why I kept getting pneumonia, and that if we didn’t do the Spinal Fusion surgery soon, my lung would collapse and basically I would not be alive too much longer after that. The weird thing about doctors is they never say, you need to do this or you will die, but even at the age of six, I remember feeling the gravity of their words and understanding I needed the surgery.

Great! So I had the surgery and everything was peachy and that was the end of it!

Nope.

Spinal Fusion surgery is the second most dangerous surgical procedure, next to brain surgery, and the doctors made it apparent that there was no guarantee I would thrive after the procedure (read: he might die during the surgery). As you probably know, the spine is a pretty vital part of the human body; it surrounds the precious spinal cord and is surrounded by all of the body’s major organs. In a complete Spinal Fusion surgery, the surgeon cuts the back open from the neck to the tailbone, bends the spine back into a straight line with brute force, and then fuses a metal rod to the spine to keep it straight. All in all, the surgery takes eight to nine hours. Sounds fun right?

We chose to go through with the surgery; the doctors assured us that although there was a big risk, they had done this surgery plenty of times and were confident they could perform it successfully on me. The surgery was scheduled for the upcoming fall season, September I think. My little seven-year-old mind was completely terrified.

I do not remember much about the day of the surgery because of the shit-ton of anesthesia they gave me, but I do remember lying in a bed watching Sesame Street while they started the IV to knock me out. I remember being mad because I was too old for Sesame Street.

The surgery went as planned and I did, in fact, not die on the operating table. My parents had a little scare when my surgeon walked out into the waiting room about 15 minutes into the surgery. He handed them a cup with one of my teeth in it. Apparently he had removed it because it was loose and I could have choked on it if the tubes that were shoved down my throat knocked it out. Needless to say my parents were relieved this was all my surgeon came out to tell them.

The earliest thing I remember after the surgery is waking up in a bed and being in a pretty decent amount of pain. I was on my side, and a nurse came in to roll me and I thought I was going to die from the pain. I didn’t want to move ever again. Unfortunately, doctors came in my room shortly after that and cold-heartedly told me I needed to poop so they could make sure my intestines were not damaged. I started crying when they explained that a few nurses would lift me on to the toilet. They didn’t understand how much pain I was in just lying there, and they wanted to pick me up and put all that pressure on my back?!?! I must have passed out because I remember them lifting me and screaming at the top of my lungs, but I don’t remember sitting on the toilet or pooping.

My recovery in the hospital took several weeks, and it was during this time that I encountered two other patients who impacted my life pretty deeply. One was a boy who was about my age that shared a room with me for several days. He was in a severe car accident and his brain was permanently damaged. The nurses told me he had to learn how to do everything over again, eating, talking, walking, and that he would never fully recover. This was the first time I realized I was lucky compared to some people, and although I didn’t fully understand it at the time, I told my dad that I was thankful I only had SMA because it must be so difficult for that kid to relearn how to live.

On another occasion, I was practicing driving my wheelchair down the hospital hallway, (because the surgery had greatly altered the way I sat in my chair) when I passed by a dark, dreary room with a cage-like crib that contained a little boy who was fast asleep among the wires keeping him alive. There were no balloons or people or stuffed animals in this hospital room, which was the complete opposite of my room. I asked one of my nurses and she told me that he was very sick and didn’t have any family to visit him or bring him balloons.  Again, although I didn’t really understand it at the time, this moment made me begin to appreciate all the wonderful, loving people who have been there for me throughout my life. My dad tells me I gave the nurse my balloons to put in his room.

On the day that I was allowed to leave the hospital, I went outside and drove to where my van was parked. When the ramp was unfolded I began to realize something was not right. I drove up the ramp and stopped just before entering the van; my head was too high for me to get in without hitting it on the ceiling. By straightening my spine, the doctors had stretched out my body a solid 5 inches. I had to ride the entire hour home with my head tipped to the side, which felt just spectacular on my still very sore back.

Today, the metal rod is completely surrounded by my spine, and I only have moderate scoliosis, which is why I look like I’m leaning over in my pictures (it was impossible to make it completely straight because of how bad it was before). I have only had pneumonia a handful of times since the surgery, and I am still alive and kicking, so I will mark it up as a win for me. Also, I have a super-cool scar that runs the entire length of my back.

I woke up really early this morning and I am finishing up a post about a huge, painful, life-changing surgery I had when I was a kid. It’s pretty serious, but I think you will find it funny as well. I do.

Tell all of your followers to come check out my page, because the more people that hear my story, the more I feel like I’m doing something important here. (Not being a douche, just telling you how I honestly feel)

Love you all and I will try to have this story done byyy… 3 p.m. (United States, Eastern Time Zone)

Shane

When I drive my chair on the side of the road, people cross over into the opposing lane to pass me. It’s like they are afraid I’m going to erratically veer out in front of their car if they get to close to me.