Multiple Sclerosis and Ignoring Your Body

I remember my trips to the doctor when I was a child, and I smile. Aside from the occasional poke with a needle, those visits were mostly cheerful. I got to play with the strange-looking dummies with the removable eyeballs, and I stuck out my tongue as instructed. After thinking my doctor was some magician because he made my leg kick out by hitting me on the knee with a reflex hammer, he’d look in my ears, have me cough a couple of times, and that would be it. I’d get an admonishment to eat more fruits and vegetables, and then I’d get a lollypop and go home—nothing to it.

 Yesterday I visited my neurologist. My visits with him are different from those visits to the doctor as a child—big time. After running through various tests to gauge how the Multiple Sclerosis has progressed, he sat me down in his office to go over the MRIs to tell me what they all mean.

Do you know all those medical tv shows that show abnormal x-rays against lit screens? Nobody ever pays attention to that stuff – until it’s them. It was freaky to look at my brain and the lesions inside of it. I equate it to those near-death experiences where people say they could see themselves above the operating table or hear people talking during an operation. Nobody really wants to see behind the face they see in the mirror.

But the freakiest part of my doctor’s visit wasn’t seeing the MRI’s. The wig turner for me was what the doctor said.

“You’ve had MS for years, and you probably ignored it.”

Ignored it? Who in their right mind would ignore their body shutting down?

“No way, Doc. Not me,” I responded reflexively.

“It’s okay,” he said. “Most people aren’t detectives. They don’t know the clues. But if you take 10 minutes and think back a few years, you’ll probably remember several incidents in which you should’ve realized something was wrong.”

My doctor then went out to retrieve some paperwork. While he was gone, I began to think about the possibility that I’d overlooked the symptoms. The number of incidents was startling. The longer I sat there thinking, the angrier I became with myself.

“How could I be so freaking stupid?” I asked.

  1. There was an incident about five years ago. I was driving at 8 pm, and suddenly all of the lights became very bright.  The lights were so bright that I couldn’t see if I was following someone or driving into oncoming traffic. I couldn’t see cars at all. I pulled over to the side of the road. After driving at a speed so slow that I backed up traffic, I was able to get off of the highway and go home.

Now here’s the kick: Nothing about that was weird to me. Not really. Why? Because for all of my life, I had 20/20 vision and didn’t need glasses. The next day I went to the store and had my eyes checked out for eyeglasses. I specifically remember the eye doctor had a difficult time finding my right prescription.

  • For years people have asked me the same question: “Why is your hand trembling?”

I never thought much of it. I was a heavy coffee/tea drinker, and I type a lot on my computer. I thought it was just something that happened when you drink too much caffeine. Wrong! It turns out those tremors were a sign that my immune system was attacking the myelin that protects my nerve fibers. The trembling in my hand was the signal not getting through clearly.

  • And while we’re on the subject of hands, a few years back, I noticed a tingling sensation in my hand that would come and go.

“Carpal Tunnel Syndrome,” I said to myself. Wrong! Although Carpal Tunnel usually happens on one hand, somehow, I still think I should’ve caught it.  

The bottom line is that most of us are guilty of that “Invincible Youth” mentality.  Most people never take the time to check themselves out. After all, who out there hasn’t bruised a bone or puked their guts out on a crazy weekend?

Multiple Sclerosis has me pulling back the curtain on most of the crazy things I ignored about my life. Maybe this is what I needed to gain control. Life takes on a different perspective when you realize you’re not invincible and you’re not going to live forever.

Hello 2021!

Okay, I’ve made it to the year 2021. I spent the latter part of the previous year praying for it to end without a new surprise or emergency. When the new year came, I hoped that it would magically wipe away some of the gloom and desperation I felt in 2020.

It didn’t.

For one, almost everything that I touch and see is a constant reminder of how bad 2020 was. I can’t just hop in a car to visit family. Now there has to be extensive planning involved. Uncomfortable questioning has to take place about the places I’ve been, places they’ve gone, and coronavirus testing. I can’t just pop into a grocery store to get an ingredient I need for a new recipe. Now I have to consider if the visit is worth the potential risk to my life.

And then there’s Multiple Sclerosis.

After being diagnosed at the end of 2020, everything I do now is a constant reminder of how big an event my diagnosis was. I had to start my infusions, which turned out to be a double dose because my doctor wanted to be sure my body could handle the medicine without serious complications.

I took the infusions, and then came the side effects: Loss of voice (something that makes me sound like a cross between Donald Duck and a six-year-old girl). There was insomnia, loss of appetite (although I welcomed that part due to lockdown weight gain), and energy fluctuations that made me tired at weird times of the day.

I genuinely do want to be positive and let go of 2020. But now, it’s like everything around me is a constant reminder of how jacked up 2020 was.

So, what should I do? Dive deeper into depression and alienate all my friends with my “the whole world is crap” personality?

No. Sorry, but I can’t.

I have to tell myself that there are so many other reasons I should be happy. First, after these vaccinations, fewer people will be dying. Families can grieve for their losses and take healthy steps to heal. Doctors will genuinely get the rest and respect they deserve. Kids can play outside with other kids and enjoy the sunshine on their faces.

On a more personal level, on top of being a better person to myself and thanking God for allowing me to see this pandemic through, I’ll be able to hug people again. Travel will open up, and I’ll be able to see the world once more. The NBA and NFL will eventually return to sporting with the physical support of fans.

There are so many positive things I’m looking forward to that it’s sometimes difficult to contain my anticipation. More than anything, I want our lives to continue. Maybe it won’t be as it was, but as long as we open our minds and accept the challenges we encounter, tomorrow won’t be that bad.

Multiple Sclerosis: The Diagnosis

On November 19th 2020, I woke up feeling weird. There was no reason for the feeling. The sun shined just as it had the previous day. Other than a solo Thanksgiving during the pandemic, there was no new development in my life. Still, my body just felt – different.

I went to my computer intending to get some serious work done. I’d slacked off the previous day and only written 500 words in my new project and felt like a slob for doing so. I sat down at my computer and started typing. I immediately knew something was wrong. My left hand was all over the place. Every time I tried to type, I missed the intended letter. After four attempts to type the word “distinct,” I gave up and went to my bedroom to lie down. I guessed that maybe I was stressed (although I hadn’t had any arguments or fights).

After laying down for a few hours chewing on what was wrong with my hand, I began to worry. I went back to my computer and attempted to type again. The same thing happened. Frustrated, I grabbed a pen and tried to write. I don’t why, but I fancied the problem was some scrambling of the process in my brain. I know, it seems dumb, but I’ve been trapped inside my home since March, rarely leaving for anything other than a doctor’s appointment. Maybe my brain’s confusion was some “lockdown syndrome” that people weren’t mentioning. As soon as I started writing, I became terrified. I couldn’t write my name! I tried continuously for 5 minutes, and I couldn’t form the letters. I stood up to go to my bedroom, and I almost fell. It felt like I’d drank a six-pack of beer, and I couldn’t steady myself. Finally, after a few seconds passed, I was able to go to bed. I became frustrated and went to sleep. I didn’t know what was happening.

The next day I woke up, and the dizziness was gone. I went into the bathroom to shower, and when I attempted to climb into the tub, I banged my foot on the edge. I didn’t think much about it. Maybe I was still sleepy. I showered, brushed my teeth, and went to my bedroom to get dressed. When I tried to put on my boxers, my leg wouldn’t move. I started freaking out. Somehow, I was able to slide my foot along the floor until I got into my boxers. I grabbed my shirt and tried to put it on. What do you know? My arm wouldn’t move. For the next 30 minutes, I struggled to dress. Finally, after somehow tying my shoes with one hand, I limped down to my car and went to the hospital.

When I walked into the emergency room, I was more afraid of getting coronavirus than anything else. Over 30 people were sitting in the emergency room with various illnesses, and they were all sitting together. There was no social distancing. I limped up to the receptionist’s desk and stood for a few moments marveling at their attempt at shielding themselves from the virus. There was a giant wall of glass protecting the receptionist from the virus. I told the nurse the reason for my visit and passed her my insurance card. She informed me that she didn’t need it. It took me a minute to remember that I’d had foot surgery earlier, and all of my information was in their computer system.

Within one minute, the doctors came out and led me to a mobile bed. Once there, they asked me various questions about my symptoms and began checking me out. They initially thought I was having a stroke and took all the necessary steps to ensure I received rapid treatment. I wasn’t surprised. The quicker the reaction time on a stroke victim, the greater the chance for recovery.

After running a few tests and determining that I wasn’t having a stroke, the doctors placed me in a holding area. It was a weird experience. A few nurses came in to check my vitals and then skirted out of the room. Meanwhile, I shared the room with a man that was experiencing some mental issues. As a nurse attempted to take his vitals, he slapped her. She informed him not to do that, and he did it again. The nurse called security, and the man tried to hit him. Finally, the nurses calmed the man with a sedative. Thirty minutes later, he woke up and started yelling again. This time he complained that he had to go to the bathroom. When the nurse gave him a portable urine bottle and informed him that he couldn’t walk out to the bathroom, the man stood up, pulled it out, and flooded the middle of the floor with urine. I was quickly wheeled out of the waiting area and into my room.

Over five days, I saw no less than five neurologists. They all came in to check my vitals, do strength tests, and give me pieces of information as they came in. The doctors detected a demyelinating process.  The doctors saw several lesions in my brain on the MRI.  They had to do more tests to rule out an infection. I endured a spinal tap and more machine scans. Eventually, I was given steroids for the next four days, and I regained movement in both my leg and my arm.

Conclusion? I’ve been diagnosed with Multiple Sclerosis. While there are medicines to slow the advancement of the disease, there is no cure. Great. Yet another reason for me to hate the year 2020.

The upside to it all? It’s a new chapter in my life. From a writer’s perspective, sometimes I find the whole MS experience a welcoming event.  If I can retain my ability to write, I can see life and document it differently. After researching the disease, I’ve understood that although it can be difficult, it’s not the end. Life goes on. And as long as I show respect for the health requirements, my life really won’t be that much different than it was.

Did Your Job Teach You Anything?

What has the pandemic taught you about your job? What has sickness and massive unemployment taught you about the company that cuts your check? How has that lesson impacted your plans for the future?

I know a guy that was with a company for 34 years. Do you know what happened as soon as times got rough? They let him go. Let that sink in for a minute. A man that devoted 34 years of his life to a company was canned in a matter of weeks. No gold time piece. No million-dollar severance package.

Just a see ya and I wouldn’t want to be ya.

In better times, one of my other friends gushed over how much she loved working retail for a major retail company. There was nothing she loved more than earning a modest living amongst the fashion and fabric. It was her calling of sorts. I remember having several talks with her about the possibility of ownership and doing something on her own. No way. Not interested. Her excuse?

“I’m not a business person. I just want things to be easy.”

Do you want to know where she is now? At the unemployment line. The company she was with dumped her to minimize their costs. It didn’t matter that she was there for 15 years. “Take your 401K and go.” That was pretty much it.

I don’t fault anyone for loving what they do. Some people just aren’t built to be business owners – or so they think.

But think about this.

Pandemics will increase. They’re bound to. More people on earth means greater exposure to disease. Are you going to use this current emergency as an opportunity to get over that fear? Or will you allow yourself to be manipulated by that robotic way of thinking? Will you let go of your comfort zone and move towards financial independence? Because like or not, the pandemic forced you to that position anyway. Your government job isn’t safe. Your retail job isn’t safe. Your financial job isn’t safe. The pandemic chewed on all of those things.

Whether 15 or 50-years-old, you can no longer put your faith in your job. It might not be there. You have a duty to your family and yourself to seek independence. Don’t be afraid to give yourself a second option. Sure. Keep your job if you’re one of the few to actually have one. Keep it. But when you go home at night, don’t flop down on that sofa and watch tv. Plan for the future. How will you survive if it all comes crashing down again? Because the next pandemic is coming. And if you don’t use this time to make plans, you may not survive the next one.