LAUGHING AT MY NIGHTMARE

I’m fragile.

You shouldn’t be surprised. Putting it simply (because I’m an English major and don’t have the scientific knowledge to put it any other way), the human body is held together by a framework of muscles and bones. SMA is a muscle wasting disease, which you should know by now basically just means my muscles are shitty at doing anything that muscles are supposed to do, and they’re constantly getting shittier. Don’t believe me? Since I started this blog 16 months ago, I’ve lost the ability to lift my hands any higher than mouth. When my nose or eyes or forehead itches, which seems to be all the fucking time now that I can’t reach those spots, I have to ask someone for a fork or a straw which I use to relieve the itch. Yes, it looks weird, but it’s better than constantly asking other people to itch my face for me. Anyway, my muscles, a large part of my framework, suck.

Another side effect of having shitty muscles is having shitty bones. If you’re not aware, bones that don’t bear weight for long periods of time become extremely weak and easy to break. My doctors tried to delay this process as much as possible when I was a little kid by making me use a “stander.” The stander was a torture device that held my body in a faux-standing position (like a fauxhawk, but different). My legs could never support the entire weight of my body, but the idea was that if I used the stander every day, forcing my legs to bear at least some weight, my bones would strengthen and not become as weak later on in life. However, 5-year-old Shane did not appreciate this logic and thought of the stander only as another way for his therapists to hurt him. I avoided the stander as much as possible and eventually my muscles and bones became so weak that standing in the stander became too painful to bear. I’ve been either sitting or lying down ever since, bearing almost no weight, and this has caused my bones to become pretty weak over the last 20 years.

We now understand why I’m fragile. However, I’m guessing it’s difficult to conceptualize how fragile (or how not fragile) I actually am. I don’t want you to think that flicking my arm will cause a compound fracture, but punching it with any amount of force might. If we ever meet in person, please don’t punch me.

To give you a better idea of my fragility, here are some things that would probably break me:

• Getting hit with a soccer ball 
• Being dropped on the floor when someone lifts me
• Having someone (who’s not an infant) sit on my lap
• Being kicked
• Falling off the toilet
• Falling off a mountain
• Being laid on top of

I suppose you can think of me as a toddler, in terms of how easily broken I am. (Are toddlers easily broken?)

My fragility is not, however, the only point of this post. Instead, I’d like to tell you about a recent event in my life when I legitimately feared for my safety because of my fragility. Let’s begin.

Several weeks ago my good friend Lily surprised me with an awesome phone call: “Shane, Michelle Obama is speaking at Moravian! I got you a ticket. You’re coming with me.”

I’m usually pretty hesitant to commit to going to events before doing my own research. (Is the venue accessible? Will there be a handicap seating area? Will I be able to see from that area? Will my non-disabled friends be able to sit with me in the handicap section?) However, Lily quickly convinced me that an event of such prominence would obviously be accessible, and that this was a once in a lifetime opportunity, and that we wouldn’t be friends anymore if I didn’t attend. Needless to say, I attended.

In the van on the way to the speech, Lily and I speculated about what the seating arrangements would be like. I’ve been to plenty of sporting events, concerts, speeches and shows in my life to know that the handicap seating area is an often-overlooked section of many venues. Michelle was speaking in the basketball gym at Moravian, a smaller-ish building that does not have a built in handicap area. I would be sitting somewhere on the floor, probably near the front, I hoped, so I could see the stage. My biggest concern any time I go to a public event is that the handicap section will allow me to sit with at least one of my able-bodied friends. Let’s be honest, if you went to a football game with a bunch of friends, and found out upon arrival that you had to sit in a secluded area with a bunch of strangers while the rest of your friends sat together somewhere else, you would be at least slightly pissed. This has happened to me more than once, and it is indeed a pile of horseshit.

I must have expressed this mentality, because Lily asked, “So what do we do if we get inside and they try to split us up?”

“Tell them that you have to sit next to me in case I need my seizure medication,” I replied matter of factly.

SMA does not cause seizures; I’ve never had one in my life, but toss out the word seizure next time you’re trying to get something from a person of authority and you’ll be amazed at how understanding they become. To hammer the point home, I promised Lily that if she didn’t do everything in her power to sit with me, I would tell the secret service that she was planning an assassination and have her removed from the venue. That’s what friends are for.

While waiting in line to get in to Johnston Hall, secret service agents approached us and instructed “my companion” and I to follow them. We were with several friends, but we assumed this would eventually happen, so we didn’t argue. Lily and I followed the badass dudes in suits around the side of the building and into the accessible entrance. Upon entering, we were greeted by an older man with a metal detection wand. At least I’m assuming that’s what it was; maybe it was a republican mentality detector, so that they could keep all opposition out of the rally. He scanned Lily and let her through, then surprisingly just waved me through the security checkpoint without checking me at all. I have a bag on the side of my chair that, for all he knew, could’ve been filled with bombs and knives and rocket launchers, but I’m a cute little wheelchair kid so obviously I can’t be evil. I smiled and did my best to not look like a terrorist as I drove past him. Spoiler alert: I’m not a terrorist; that’s not where I’m going with this story.

The gym was packed to capacity. A stage had been constructed on one end of the basketball court, and the rest of the floor was covered by thousands of human beings jamming themselves as close to the stage as possible. My initial thoughts were, “Holy shit it’s 1000 degrees in here,” and “Where the hell am I supposed to sit?”

Off to the right I spotted a big blue handicap sign and some secret service agents standing around it. I moved towards the sign like a moth instinctively moves towards bright light.

(In noisy places, surrounded by people who’s heads are generally 2-3 feet above mine, it’s easy to feel small and insignificant. Even when screaming at the top of my lungs, I don’t have the lung capacity to be very loud. I’ve grown accustomed to not having much of a voice at loud, public events. I rely on facial expressions and the voices of my companions to communicate with other people.)

A young woman with a volunteer sticker on her suit jacket stood next to the handicap sign and explained to us that the disabled seating section was located in the front, near the stage. She motioned to follow her and led us down a narrow path created by a rope barrier along the edge of the gym.

When the handicap section came into view, my heart sank a little. It was a small area near the stage that was blocked off with rope and very noticeably overflowing with old people in wheelchairs. The volunteer lifted the rope for me and promptly closed it in front of Lily. Before I could maneuver my chair around to argue, another secret service agent was directing me into a spot to park my chair. I parked and waited. I can’t turn my head or body very far in either direction, so when another wheelchair pulled up next to me, I was basically stuck staring straight ahead.

Someone off the my left, not in the handicap section, called my name multiple times, failing to understand that I physically couldn’t turn my body to look at them. I felt bad, but this isn’t the first time this awkward situation has arisen so I didn’t let it get to me.

A text from Lily informed me that she was in the regular, standing room only section. The secret service would later let her into the handicap section, but she had to sit behind me, making communication impossible by any means other than text message.

I was pissed. But my annoyance only lasted for several minutes before I had the epiphany that I was really lucky to be seeing this speech at all. I had a great view of the stage and it ultimately was not important if Lily was sitting next to me or behind me. We weren’t at the speech to talk.

Shane, not to be rude, but why the fuck did you start this story by telling us how fragile you are?

Calm down, agitated reader, I’m getting there.

Fast forward a few hours, the speech was pretty good. Lots of “FOUR MORE YEARS!” chants, which were interesting. It was my first political rally, so I have nothing to compare it too. My mind was most captivated, however, by the people sitting around me in the handicap section. To my immediate left was a middle aged woman in a manual wheelchair who spent a majority of the speech yelling “DOWN IN FRONT,” attempting to make some people a few rows in front of us sit down. Assessing the position of her head, in relation to the position of Michelle on the stage, I decided she could see perfectly fine and was most likely just a curmudgeon in the making. In front of me sat a very old man who read a very graphic war novel and kept adjusting his wheelchair to be further to the left for no apparent reason. On my right sat two elderly war veterans. One of them was black, and I listened to them intently as they exchanged grim stories of racism back in the day. It was probably the most impactful moment of my night, hearing these two men discuss what it truly meant to have rights in America.

Then the speech ended. Raucous applause accompanied Michelle Obama as she walked off the stage and approached the handicap section. That’s when things got nuts.

When the crowd realized that she was going to shake hands with the front row, everyone went completely ape shit. The flimsy rope that blocked off the handicap section gave way as a flood of able-bodied people crashed into our area, pushing themselves between the wheelchairs to get to the front. The angry wheelchair woman to my left lost her mind and JUMPED out of her chair. I kid you not, she literally leapt out of that fucking wheelchair, screamed Michelle’s name repeatedly, climbed over an empty chair in front of her, and disappeared into the crowd that was surging towards Michelle.

This is when my fragility became a problem. Sitting in the middle of the handicap section, surrounded by wheelchairs, folding chairs, and crazed Obama supporters, I was suddenly very unsafe and very trapped. Large, heavy, adult bodies tripped over me and stumbled into me. I was merely an object for the fans to maneuver around. Generally people are abnormally careful around me, but on this night, if meeting Michelle meant smashing my body, I was getting smashed. All it would’ve taken is one stumbling person to connect with my head and my neck would’ve snapped like a twig.

To make matters worse, trying to forcibly drive my chair in any direction only caused more people to fall over me. All I could do was sit and hope that the craziness would subside and I would live to laugh about it later.

Clearly I did. Eventually, Lily used her hulk strength to throw a few wheelchairs out of the way.  She then lowered her shoulder and became my lead blocker as we barreled through the crowd on our way to the back door.

Overall, it was a very worthwhile experience. I didn’t die, which is a plus! And let’s be honest, if I had died in the chaos, it would’ve made an awesome story and the Obama’s probably would’ve called my family to offer condolences, which is something not many people can say has happened to them.

You asked for it, and we listened! I’m excited to announce that LAMN, Inc. has FOUR new styles of wristbands available at http://www.laughingatmynightmare.com/apps/webstore/!

Wristbands are $5, with free shipping, and we ship them worldwide! Payment can be made via PayPal or credit/debit card.

Your support will greatly help us raise money for muscular dystrophy research, and develop programs to make the world a more positive place. Additionally, these wristbands will make you look flat out, fucking awesome.

Here are the new styles:

“A Refreshing Frame of Mind” band

Life is hard and full of problems; sometimes the best solution is just to laugh at everything that’s causing you unhappiness. This “laugh.” band will serve as a powerful reminder to you and others around you that life should never be taken too seriously. After all, life is too short to waste time down in the dumps!

This band comes in two styles. The first is black with “laugh.” written in pink on the outside and “LAMN, Inc.” embossed on the inside.

The second is sparkly blue with “laugh.” and “LAMN, Inc.” written in purple on the outside.

“LAMNpoon Those Negative Nelly’s” band

Definition of “lampoon” - To severely ridicule the character or behavior of a person.

Help LAMN, Inc. fight negativity with this sleek gray LAMNpoon band! We’re not promoting being mean to others, but if someone is whining about a petty problem, remind them there’s always a reason to be happy!

This band is a fashionable grey with “LAMNpoon” written on the outside and “LAMN, Inc.” embossed on the inside.

“Building a LAMNasty” band

What do you think of when you hear the word dynasty? The New York Yankees? China and its Great Wall? The McDonald’s fast food chain? Here at LAMN, Inc. we are reinventing the dynasty. Help us build a LAMNasty to destroy muscular dystrophy and teach people to laugh at and overcome the challenges of life.

This band is lime green with “LAMNasty” written on the outside and “LAMN, Inc.” embossed on the inside.

Head over to http://www.laughingatmynightmare.com/apps/webstore/ to get yours today! Thanks!

http://www.laughingatmynightmare.com/apps/webstore/

Only $5 and free worldwide shipping!

My dad, author of The Sidecar Kings (<- click to buy, proceeds benefit the MDA!), has been doing lots of writing lately… about me. When I started reading his stories, I will admit it was a little weird, seeing my life through someone else’s eyes. After I got over that tiny emotional hiccup, something else occurred to me: his stories were excellent.

Without giving too much away, I’m excited to announce that my father and I will be working on combining our collective experiences of my life into a book! We both agreed that a book offering two unique viewpoints of my unique situation will have a much better chance of success than if either of us tried to write a book on our own. I’m better at handling the comedic aspects of my life, and as you’ll see in a minute, my dad is better at the emotional.

So without further ado, here is a story from my dad’s collection. Take a few minutes to read it, and if you would like to contact him about his book, our book, this story, or life you can email him at jsbur886@aol.com

“This past May, Ride for Life was at Hershey Park. There aren’t too many rides Shane can go on because of his inability to control his balance, but there are a couple. One of them is a giant Ferris wheel, the kind with circular gondolas.

As is the case with every amusement park, the handicap accessible entrance is always the exit of the ride. This ride was elevated, so we had to go through the exit gates. At the gates a group of kids were waiting for their friends to come off the ride. They inadvertently blocked our way and when they saw Shane, they peered at him like he had just fallen from the sky. We all got used to that “circus is coming to town” look long ago, but it’s still something we’d rather do without.

Anyhow, once we got past the gawkers, we continued on up a long switch back ramp and finally ended at the ride exit platform. Some riders were just getting off as we approached. Since it was the first weekend the park was opened for the season, the ride operators were still going through their learning processes. They were also cognizant of handicapped riders. As soon we appeared, one of the operators instructed us to park in a safe spot away from the ride. On the opposite side of the ride were throngs of people waiting to board… watching.

In most parks we‘ve been in, there is an unwritten “no waiting” rule for handicapped riders, so we didn’t have to wait long to get on the ride. I noticed Shane looking over at all the people and then looking away. I could tell he wasn’t comfortable, as the throng began staring, knowing we were going to be next in line, ahead of them.

When it was our turn, the operators helpfully opened the gondola door and held it open for us. Andrew hopped in first. I picked up Shane, cradle fashion and carefully stepped onto the swinging gondola. I have done this several times and have gotten pretty good at it. It’s easy to fall. I’m fortunate that I have not yet. Once in the gondola, I had to place Shane on the circular bench seat next to me, a hard plastic affair without any side support. It took several minutes to get him squared away. I awkwardly held him the best I could.

Funny thing about throngs… invariably there’s always one asshole within. Sure enough, we could clearly hear someone complaining about how long our loading took. I shot a glance in the direction of the voice but no one would look me in the face. It appeared one collectively embarrassed the all.

Once finally underway, we rose into the sky. Shane was stable enough that he was able to look around and take in the scenery high above the ground. He loves high places. Since the wheel was still loading, we stopped frequently. During one of our stops, a large hawk flew into view. The majestic bird circled around the wheel a couple of times, tipping its wings, appearing to dance on the wind currents above us. It was beautiful, close enough to see its piercing eyes looking us over. Then it disappeared, as quickly as it came.

Shane looked up at it and just above a bare whisper, he longed, “Wish I could fly like that… to be free.” I promptly looked away, my eyes immediately moist. Andrew caught me and asked what the matter was. I told him the pollen was very heavy and it was making my eyes water.

We rode the rest of the ride in silence.

Once the ride ended, we reversed the loading process, which took even more skill than loading. I managed to make it painless for Shane and once in his chair he complimented me on my acrobatic one-handed lift and grab. Two rarities, a pain free transfer and a compliment to boot.

He and Andrew raced down the ramp they came up, testing limits of tires and sneakers through the turns. 

Freedom to dance on the wind… Lord let it someday be.”

Never in 1000 years did I think that my stupid little idea to write about myself would turn out to be so unbelievably successful. The past half-year has been the craziest time of my life to say the least.

I just want to thank each and every one of you that has taken the time to follow me and read my blog. I know it sounds cliché, but I don’t really care, because I honestly could not have done it without you guys.

ps- My new story will be up within a few days (I told you I set the bar too high this weekend, whoops!)

Yesterday was just a normal day… sort of. Although I’m on winter break, my dad woke me up at 6 AM and helped me get ready for the day, which included putting on sweatpants and a T-shirt, and handing me a cup of coffee with a pink bendy straw. I sat in my living room, mindlessly staring at ESPN, enjoying my coffee, but yearning to be back in the cozy warmth of my bed. If you remember one of my earlier stories, you know that my sleep schedule is very much dependent on the lives of my family members. On this day, both my parents had to leave for work by 7:30 AM, along with my brother, who left at the same time for high school. Angry is not the right word to describe how I feel about having to live this way, more like reluctantly accepting. It is what it is.

This story really has nothing to do with my sleep schedule, but I want you to understand that yesterday was just like any other day; I woke up early, my family left, and I was home alone until about lunch time when my cousin Sarah came over to hang out.

However, one tiny factor made yesterday a little bit different from most other days, and it ended up causing something pretty ridiculous to happen.

I decided not to do my feeding tube the night beforehand because I hadn’t been feeling too well and the idea of a tube tickling the back of my throat all night was not as enticing as it usually is. Skipping my overnight feed (I’m a vampire) is not a big deal. I usually take one night off each week to give my repeatedly assaulted nasal cavity a break.

Over the past few months, I have discovered an unusual side effect that occasionally occurs the day after I choose not to do my feeding tube. Once again, unusual is probably not the right word, more like extremely unhealthy and frightening. Here is what happens: At some point during the day after I’ve skipped a feed, there comes a point when, seemingly out of nowhere, my body is overwhelmed with an incredible feeling of hunger. Not your typical “I missed lunch, now it’s dinner time, so I’m going to eat a lot,” type of hunger. No, this is far scarier than that. In a matter of a few minutes my entire body becomes extremely hot, basically feverish, and begins to sweat. From my toes to my head, I literally feel drips of sweat soaking into my clothing… its rather disgusting. Then, my whole body starts to tingle, like the feeling you get when a numb body part regains feeling, except everywhere. All of these alarming symptoms that spring up out of nowhere are centered in a dull, achy feeling of nothingness in my stomach.

The first time this happened was the day after I skipped my feeding tube for the first time. It was midmorning and I hadn’t eaten breakfast yet, and when the symptoms started, I honestly thought I was having a heart attack. I probably would have freaked out a tiny bit had it not been so obvious that this reaction was a result of the intense feeling of hunger that I suddenly felt. I scrambled my chair to the kitchen and asked my mom to warm up a bowl of leftover spaghetti, because that’s the first thing I saw in the fridge. I inhaled that spaghetti like it was the antidote for some deadly poison that I had ingested, and in a way, it was. A few spoonfuls into the bowl, I started to feel the symptoms residing. Relief flooded my mind and I promised myself that I would remember to eat plenty of food whenever I skipped my feeding tube from then on. I’m not a doctor, but it seems rational that my body is so adjusted to receiving 1500 calories overnight that when it doesn’t receive these calories, it loses its shit if I don’t give it enough fuel the next day. I should probably be a doctor.

Anyway, this insane hunger reaction only occurred one more time after the first one, but it wasn’t a big deal because I knew what I needed to do to fix it, and my mom was already in the process of cooking breakfast when it started. Until yesterday.

My quick-witted followers may already be noticing a problem. You see, the first two times I had this reaction, it was luckily the weekend and my family was home to help me get food. Yesterday, everyone was out of the house by 7:30 AM, and Sarah wasn’t coming over until 11-ish. Here are the ridiculous events that transpired yesterday morning. Spoiler alert: I didn’t die.

All I had for breakfast yesterday was a half a cup of coffee and a few sips of a milkshake. Totally not enough to sustain me until lunch, and I knew that at the time, but my hatred for being awake at 6 AM outweighed my desire to worry about my health by about 1 million to one, so I put very little thought into my small breakfast.

 A few hours after everyone had left, while I was watching an episode of Mad Men and thinking about the pizza that Sarah and I were going to order, I suddenly felt warmer than usual. My legs started to tingle and as it spread to the rest of my body, I immediately knew what was happening. This was not a good situation, and my usual chilled out demeanor quickly turned to panic. I didn’t know what would happen if I didn’t eat something in the near future, but the sweat soaking my entire body hinted that it would probably not be a pleasant experience. I felt completely and utterly screwed.

I ran through my options in my head. Here’s what’s important to understand, if I absolutely had to I could have called my neighbor or Sarah and asked them to come over and help me get food, but if you know me, you know that I am extremely opposed to asking people for annoying help if I don’t need it. I needed to find food.

Without really thinking about what I was doing, I paused Mad Men and drove my chair to the kitchen. Nothing was more frustrating than what I saw. Food was everywhere, but all of it was just out of my reach. A bowl of grapes sat in the middle of our dining room table, next to a bowl of apples and oranges. Near the edge of the table sat a tin of cookies, several inches out of my reach, but even if I could have grabbed them, there’s no way I would have been able to pull the lid off. On my kitchen counter was a bag of muffins, two feet too high for me to reach.  Three more tins of cookies sat similarly positioned on the other side of the kitchen. Food was all around me and I was completely helpless.

I desperately drove into my room, knowing that I never have food in my room, but searching for anything that might somehow help me reach food to quell the otherworldly feeling that now inhabited my body. A pack of Reese’s peanut butter cups sat on my nightstand, a few feet out of reach. It was maddening that I was so close, yet so far from all of this food. My stomach screamed at me.

As I turned around in my room, the greatest sight I’ve ever seen in all my life appeared before my eyes. Across my room, sitting on a TV tray at perfect Shane-height, was a 1-pound box of chocolates that I had received as a Christmas gift. My heart jumped out of my chest and I’m pretty sure I screamed in excitement. However, the battle was not over. My arms are so unbelievably shitty at performing simple tasks that worried I wouldn’t be able to pull the box onto my lap and open it.

I used my chair to gently push the TV tray into a better position, so I could get myself as close as possible. The box of chocolates was only about 6 inches away from my left knee. I used the strength of both my arms to lift my left hand as high as I could, which is about shoulder-height these days, and flung it forward with all my might. My hand plopped about 2 inches short and all I got was TV tray. On my second effort I was able to land two fingers on top of the chocolates, and I slowly began sliding it towards my lap. At this point I was laughing hysterically, possibly because my body was shutting down, but probably because I couldn’t help but think about how stupid and ridiculous this situation was.

“Shane passed away because he didn’t do his feeding tube and had a heart attack after not being able to reach his box of chocolates.”

When I pulled the box onto my lap, I felt the greatest sense of relief that I’ve ever felt in my life, and I’m not hyperbolizing it even a little. My adrenaline gave me the superhuman strength needed to pull the lid off of the box of chocolates. The next 15 minutes are a blur. I sat there in complete ecstasy, shoveling chocolate into my mouth and basking in the feeling of accomplishment that comes from saving your own life. I don’t know if I’ve ever been happier.

I understand that this story might seem insignificant, and it probably is. I could have called someone if I hadn’t found those chocolates, but when you spend your entire life relying on other people for help, doing something on your own feels absolutely incredible.

Next time you are feeling completely helpless, like there’s nothing you can do to fix a problem, keep looking; maybe you will find a box of chocolates.

(Source: laughingatmynightmare)

Guess what guys…. the wristbands are now available to buy!

Guess what else…. shipping to other countries is no longer a problem and can be done from the website I have created. Please allow 1-2 weeks for shipping, especially orders placed outside the U.S.

Remember, these wristbands are meant to raise money for the MDA, and advertise my blog, so buy one and make sure to flaunt it in front of all of your friends so that they get jealous and want one too.

Let’s raise a SHIT ton of money!

I love each and every one of you and can’t tell you how much I appreciate your support. Thank you <3

http://www.freewebstore.org/Laughing-At-My-Nightmare-Merch

A long time ago, I proposed the idea of making shirts with my blog name on them, as a way to help spread the word. I decided shirts were too expensive/complicated, but I have a new idea that I think will be 1000 times better and more awesome!

Wristbands.

I want to make silicone (livestrong style) wristbands that say Laughing At My Nightmare!

There are 3 reasons I want to do this:

     1. To make some money for myself.

     2. To raise some money for SMA research. (I was thinking 50% of my profit will be donated to SMA research.)

     3. So we can all have awesome wristbands that everyone will be jealous of.

Here are two initial ideas I had for design:

The wristbands will be the same size as livestrong bracelets, but the text will be printed rather than engraved.

What do you think of these designs? Which one do you like more? Would you be interested in buying one? 

I was considering a price of $2.00 per wristband. Do you think this is a reasonable price? Too high? Too low?

Lastly, I was thinking about selling these through my ebay account, but I was wondering if you guys knew of any other methods for selling a bunch of items online? I can forsee shipping being a hassle, not necessarily that it will be expensive, because it shouldn’t be, but just physically taking them to the post office every time someone orders one. Shipping is the only challenge in my mind, but I’m not too worried about it.

What do you think?!?!?