Alex describes his fondness for late nights this way…
“Dad, I’ve got things I want to do.”
His “things” include mastering every video game he owns, watching any number of movies in his collection, or catching up on DVR recordings of Fallon and Kimmel. They include building Legos, drawing superheroes, or writing in his Darth Vader journal. They include laughing with YouTube gamers Pewdiepie, Ninjahiga, Smosh, Tobuscus, or Jacksepticeye, to name a few (note: if you are unfamiliar, millions follow these guys). To put it mildly, Alex keeps himself occupied and lives each day to the fullest.
It’s always amusing to see his friends try to keep pace. They arrive for weekend sleepovers full of energy and determination to play games alongside Alex until the wee hours. They hoot and holler as friends do, ask for more water or snacks, and swear they’re wide awake when I periodically check on them. Our house echoes with the familiar “OHHHHHHHHH!!” for every Madden 2016 touchdown, Mortal Kombat dissection, or Grand Theft Auto driving demonstration, while Kristy and I sit downstairs and enjoy classic rock and our traditional Friday Night pizza and beer.
Not long after midnight, however, when Alex is just getting warmed up, his friends typically drop like flies. Despite Alex’s pleas for company, his friends succumb after being up since the crack of dawn like most school-aged kids. Alex will then call for me to help with something or another. When I enter his room, he’ll nod toward his friend and shake his head as if to say lightweight! I’ll chuckle with him, place a blanket on his friend, and help with the endless list of something or anothers.
Alex’s requests come in bunches, and typically include scratching itches, lifting him higher on his incline bed because he has slouched while playing video games, or fixing his constant wedgie. They’ll include smoothing a crumbled bedsheet beneath his back, removing an irritating bread crumb that somehow found its way beneath him, or straightening his bowed legs. He’ll ask me to put a different game or movie in the PS4, set up his laptop so he can watch his YouTube gamers, or arrange a tray so he can work on his latest Lego project or journal entry. I’ll serve his needs, then head back to bed. I’ll place my cell phone on the nightstand, and get some sleep before his next guaranteed call for help.
When that call comes, he’ll usually want more water to drink, a snack, or a salami and mustard sandwich. Or, he’ll need me to switch out a game or movie, grab a book or magazine for him to read, or need me to find (always small) Lego pieces dropped somewhere in his sheets or under his bed. Sometimes, however, he’ll bypass the phone call and simply yell, which is what he did recently. But, I’ll get to that.
Although Alex is social, I am certain he would rather NOT call for help. I am sure he would love to do things on his own, if he could. He is a very determined kid and has “things he wants to do,” remember? That can be frustrating when you rely on others for nearly everything. Alex cannot help himself beyond a small radius around his chest, and that radius shrinks every day. To give you an idea of his immobility, consider:
- Being unable to scratch itches or soothe reddened skin beneath a tight waistband;
- Feeling uncomfortable from stillness, but being unable to move your body;
- Needing help for anything beyond arm’s reach or weighing more than a couple pounds;
- Needing others to completely dress you while you lie in bed;
- Needing assistance to use the restroom while you lie in bed;
- Needing others to turn you when you sleep;
- Needing assistance to hold and balance a book or menu;
- Relying on others to help you eat and drink;
- Building Legos only to drop pieces and being unable to retrieve them;
- Feeling thirsty or hungry and being unable to get to the kitchen;
- Hearing your friends outside and not being able to join them quickly because the process to get outside takes at least twenty minutes because of your stupid back. Then, when you DO get out, you discover your friends have moved on to somewhere else;
- Dropping your cell phone, video game controller, or television remote, and being unable to pick it up although it lies next to you on the floor;
- Watching helplessly as your dog chews something of yours, and being unable to stop it;
- Being unable to fend off a tickling attack or, worst of all,
- Listening to your Dad’s dumb jokes over and over, and being unable to plug your ears!
So, where am I going with all this? Consider this true story that happened just a few nights ago…
Alex called me about 1AM in need of assistance. The call woke me from a deep sleep, and it took a few minutes to shake the cobwebs. As I rose and then sat on the edge of the bed to get my bearings, Alex screamed…loudly. It was not just a frightened scream. It was a terrified scream, the kind of scream that IMMEDIATELY sets a parent into action. My parental adrenaline kicked into high gear and I leaped off the bed. I bolted out of our bedroom, down the hallway, and arrived in Alex’s room faster than I ever had before. When I arrived, Alex was in a full panic.
“DAD!! THERE'S A SPIDER ON MY LEG!! THERE'S A SPIDER ON MY LEG!!”
I looked down and didn’t see anything and considered maybe it was his imagination. Perhaps he had just watched something scary on TV.
“Where?” I asked, confident everything would be okay.
“ON MY KNEEEEEE!!”
I looked to his knees and still didn’t see anything, but followed his direction considering his emotional state. I swept my hand around both knees and sure enough, a spider the size of a half-dollar began to sprint away. WOW! The kid is not exaggerating! That thing is huge and fast!
I instinctively slammed my hand onto the bed and wounded the spider enough to then deliver a second, fatal, blow as it tried to limp away.
“DID YOU GET IT? DID YOU GET IT?”
I used a tissue to pick up the spider and show Alex that I did indeed. When Alex calmed down, he explained what happened. The story struck me as another example of how utterly frustrating Duchenne and immobility can be.
Imagine yourself as Alex as you read this account.
While lying in bed and playing a video game, Alex saw something move out of the corner of his eye. He turned his head and saw a spider slowly descending on a single web strand from a recessed lighting fixture set in the ceiling above him (see the picture above for the subject fixture as viewed by Alex). The spider stretched long ways as it descended on its thread, and dropped steadily, yet quickly, towards Alex’s legs.
Alex panicked like anyone would. But, because of Duchenne, he couldn’t do a thing about it. He couldn’t scoot back or jump away and off the bed. He couldn’t shift his legs out of the spider’s path. He couldn’t kick or throw the sheets or hide beneath them for protection. He couldn’t toss the PS4 controller at the spider, swat the spider away, or kill the spider somehow. He couldn’t even form enough strength to blow the web strand away, if that was his only alternative. No, instead, Alex resigned to lay there, helpless, and watch the descent. Duchenne tortured Alex to see and then feel the spider’s landing and crawling until help arrived.
Think about that for a minute. How would you have reacted? What would you have done?
It’s no wonder Alex screamed for help.
More importantly, it IS a wonder how Alex stays so positive in the face of Duchenne….except, that is, when there are spiders hanging by a thread.