Content Warning: this piece contains strong language
I was diagnosed with Multiple Sclerosis (MS) twenty years ago and if there's one thing I've learned about adapting to this disease is that it's a constant battle every day. No matter how much you plan to deal with your symptoms for the day, that usually still doesn't matter. Some other symptom will pop up that you didn't plan on treating and then you're stuck re-adapting again to get through the rest of the day. The way I deal with this mystery is to just assume that every day living with MS will be different. I put my adult diaper on one leg at a time like everyone else, but with a positive attitude ready to conquer the day. No matter what symptoms occur.
My progression has left me non-ambulatory for a decade already. I use a power wheelchair with a cumbersome headset that I control with my head, but when I'm fully assembled, I'm as independent as anyone, and I can do whatever the hell I want. Today I'm going to Pike Place market to load up on local quality meats from Don and Joe's, the famous meat vendor behind the other famous vendor that throws fish.
Jackie, my home nurse, is working the morning and afternoon shifts today. She knows my routines very well. We do everything we can to battle my symptoms of spasticity, pain, and fatigue. Just to name a few. We start with a wholesome breakfast of fruit salad, bacon, and cinnamon raisin toast. She then gives me my muscle relaxers, and ibuprofen to fight any possible pain sensation. I down them all at once with some extra strong green tea that I sip through a blue metal straw.
Jackie snugly slides up my adult diaper so I don't piss on my clothes, and then she slowly dresses me by rolling me side to side in my hospital bed. Since I can't transfer into my chair anymore, we use a Hoyer lift with a black sling to place me into my power wheelchair. Finally, she does some adjustments on my headset so the side sensors that I use to turn are lined up with my head. Now I'm finally a free man ready to take on this beautiful cool sunny day. I've done everything I can possibly do to fight my MS symptoms for today.
We leave the building together. She goes to her car, while I swiftly drive with my headset and my head up high; I catch the bus to downtown Seattle.
Everything is going great. The bus ride is flawless and my head-steering is off to a smooth start. Before I go to the market, I go down a steep hill one street over, where I can see an old-school red neon 'City Market' sign with Puget Sound as the backdrop. I drive around and take the back route to my favorite lookout spot behind the market, an accessible cement porch at the Old Stove Brewery where there's an even better view of the Sound. The Great Wheel, stadiums, giant orange loading cranes, and the iconic green and white ferries pulling into the docks. A place of peaceful calmness before I go into the hustle and bustle.
I put my chair in slow mode, so every time I press my head to the back sensor on the headset I move forward at a walking, controlled pace—but only when I keep my head pressed down on it. If someone suddenly jumps in front of me, I have to lift my head off the pad to stop. Kind of like patting your head and rubbing your belly.
I head toward the north entrance of the market right across the street from the crowded first Starbucks. Passing by some locals enjoying themselves smoking pungent marijuana and listening to soul music. The first vendors I pass are all the artists selling T-shirts, paintings, and wind chimes.
The tourists and patrons are coming and going in single file out the entrance. I carefully merge and continue down the heart of the market, looking at all the delicious goods like honey, fresh shrimp, and exotic mushrooms—but at the same time I have to avoid breaking people's ankles. They probably don't see me and don't give a shit.
I finally get to the other end of the market when I'm stopped by the famous fish vendors screaming "five-pound salmon," followed by "five-pound salmon" and a young fisherman throwing the giant fish high over the display case so they can wrap it up. I'm bothered by the ritual because everybody gathers, and I'm stuck trying to squeeze through to Don and Joe's.
Joe helps me with my order of bacon, two Cordon Bleus, and a pound of house marinated steak. Since I've been here many times, he knows the drill. He kindly takes my bank card out of my wallet that's in my sweatshirt pocket and then hangs the bag over my side wheelchair controller.
I'm still feeling wonderful with the way my day is going. I leave the market smelling hot fresh donuts and see warm candied pecans wrapped in a checkered cone. However, when I'm going out the south entrance crossing First Avenue's cobblestones, I don't see a missing brick in the road. I fall right into the hole from the missing brick, causing my body to slide forward and my testicles to slide under my body! The pain is unbearable and stops me in the middle of First while my testy implodes underneath me.
I have fifteen more seconds left to cross, the pressure is on, but now one of the side sensors on the side of my power chair’s head controls has been knocked up so high that my chair can only turn to the left. Everything was going so well but now I'm spinning in the middle of a busy bumpy road in agonizing pain.
I don't panic though, and with my headset skills, I'm able to work with I’ve got to straighten my power chair. I'm just in time 3-2-1, so I can safely drive onto Pike Street, which is now a cement park with tables on each sidewalk.
Phew! That was close, but I'm not entirely sure what to do now. My balls feels like they're exploding from being stuck underneath my body, my headset’s out of whack, and I'm next to this stupid Bronze Sasquatch statue that, I swear, is laughing at me under the afternoon hot blazing sun. I have to get back to Jackie now to help me out with this twisted mess.
I spot a redheaded city ambassador wearing a neon green vest and ask her for help. She pushes down my side sensor so I have complete control again.
The fastest way for me to get home is taking the bicycle lanes up Pike Street the twelve blocks to my apartment on twelfth. I take a deep breath and position myself so I can start, go fast, and begin my journey up the hill.
Every single bump that I hit feels like my little brother is cheap-shotting me in the nutsack again. The pain is worse than my root canal last week. I take a break and stop at a red light to text Jackie: "Please meet me at the apartment. There's an emergency. I need help with something." This is really embarrassing, but I have no choice, I need her help right now. When the light turns I continue on, going slowly over every bump in my path.
Thankfully, Jackie was close when I called, and she is waiting for me at the front door. I have a concerned look on my face.
"What's wrong, John?"
“I'll tell you in the elevator," I respond as we go through the door and into the elevator. "My testicles hurt so bad."
“Your testicles?"
“Yeah. I think my diaper’s too tight, or I sat on them," I whine. "We got to do something right away."
We head straight into the bedroom.
"What can I do, John?"
"Pull them out! Hurry!"
Jackie grabs some scissors to cut the sides of my diaper, so she can scoop my balls out from underneath my body with her blue-gloved hand. This releases some pressure but I'm still in serious pain. We Hoyer me back into bed right away, so we can take off my pants and spread my legs so my testes can breathe.
The pain persists like I have a bruise. "Jackie, I'm still at like a seven on the pain scale. Can I get four more ibuprofen for the pain?"
She gets me ibuprofen and green tea.
"Should we try the marijuana pain cream?” I suggest.
She unscrews the lid, and with two fingers scoops out a healthy portion to rub on my nuts. The pain gets a little better but it's not going away.
"Should I go to the emergency room, Jackie?
She doesn't answer my question, so I Google "testicle injury" and Google doc is telling me to elevate them.
"Jackie. Why don't you take one of my diapers, fold it, and elevate my testicles. They said that helps."
She elevates them with the folded diaper and after a few minutes my pain level subsides to level one. Geez. Most people have to elevate their arms or legs for injuries, but today I'm elevating my nutsack! I have a stiff vodka drink with my Cordon Bleu and go straight to sleep after I take my sleeping pill—not recommended, but today is an exception.
This is the worst MS symptom I've ever had to deal with. Testically, it's a symptom because I'm in this damn powerchair due to the progression. All kidding aside, I remained calm while handling this dreadful situation and I survived another unpredictable day with MS without going back to a hospital. Every day is different with MS. No matter how much I prepare for the onslaught of symptoms, I know I'll have to deal or re-adapt somehow.
So I can live another day and see what kind of trouble I can get into tomorrow.
Author: John J. Mistur
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