This Is RRMS: Michael Embraces His New Self

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Fast facts

• Name: Michael (Michael D on Bezzy MS)
• Location: Reno, Nevada
• Year diagnosed: 2012
• Community member since: 2017
• Describe yourself in three words: “soldier,” “magician,” “warrior”
• Go-to healthy snack: nuts
• Your happy place: playing with my granddaughter
• Person who inspires you the most: my sister, Bobbie, who was diagnosed with multiple sclerosis (MS) in 1992
• Hobbies: reading and writing
• Advice you’d give your younger self: After you get out of the army, do not stop working out.
• Song that makes you smile: “Pure Imagination” sung by Gene Wilder in the original “Willy Wonka and the Chocolate Factory” soundtrack
• Favorite movie or show: anything from the Marvel Cinematic Universe
• Pets: our cat Clover
• Celebrity you would love to see play you in a movie: Mahershala Ali

 Q&A with Michael D

When were you diagnosed?

Technically, I was diagnosed three times. The first diagnosis came from my primary care doctor. In 2011, I had a pain in my head and no memory of the next day. I went to work, but I don’t remember any of it. I don’t recall how I got to work.

Keep in mind that my days are really routine. I do the same thing almost every day, from the time I wake up until the time I go to bed. I do a lot of paperwork at work, and it was pointed out to me that I missed a lot of simple stuff.

That was a shock for me, and my co-workers actually showed me the paperwork. I have no clue what happened — I was just going through the motions.

It freaked me out. I went to my primary care doctor and basically forced them to give me an MRI. When you go to the radiologist or labs, they matter-of-factly read off the report of the MRI, which stated that I had advanced MS. That was the first one.

For the second one, I went to San Francisco, California, for a battery of tests so the neurologists at the University of California at San Francisco could confirm I had MS.

After 1 year of testing, my neurologists here in Reno officially gave me my diagnosis. That was in December 2012.

Looking back, were there any early symptoms that stand out to you now?

Tons. During my last year in the army in 1995, I thought I had sprained my ankle. And in order to get out of the army, you have to do a physical exam. I had to run 2 miles on a sprained ankle and assumed that was the reason for my foot drag. That was the excuse.

When I first moved to Reno, I had 6 months of vertigo. Doctors couldn’t explain it.

My original hobby was hunting. While on a hunting trip in 2010, I fell at least 20 times. It was so bad that a gentleman hunting with us who just had hip replacement surgery decided to carry my stuff for me. After that, I put myself in physical therapy. It all started adding up.

What’s a typical day like in your life now?

I wake up every morning, Monday through Friday, at 4:30 a.m. and get ready for work. I’m an engineer for a manufacturing company that makes medical devices. I’m usually at work from 6:30 a.m. to 3:00 p.m.

I come home, take a nap, watch the news, and then have dinner. I may wash dishes, depending on whose turn it is.

Then, I usually do schoolwork. I’m in transition to become a licensed clinical counselor with a master’s degree in social work. I do that until bedtime, which is 11:00 p.m.

How do you balance everyday tasks with your MS?

I’m very in tune with my energy levels. If I’m on the brink of reaching my limit, I stop whatever I’m doing. Whatever I’m doing can always wait until the next day.

What’s the one thing you wish you knew right after your diagnosis?

I wish I knew the level of behavioral and psychological issues I was going to go through because of the disease. I went through a weird period of isolation, which made it harder to reach a level of acceptance. I wish I had the knowledge that I wasn’t alone.

What advice would you give to someone just starting treatment?

Be consistent and mindful of your body. The hardest thing is to get in tune with your body and know what it’s doing. I know my energy levels, and I know when to say, “Stop.”

That’s one of the hardest things about being human. We think we can do this forever. That’s not the case, and the sooner you accept the new you, the better your life is.

What do you wish friends and family understood about your MS?

It is limiting. It is hard. But I can handle it.

I need them to be my family, not caregivers. I didn’t ask for a caregiver, and I don’t really want one.

They need to stop considering “Mike having so much on his plate” that they don’t want to add to it. They don’t know what’s on my plate, and they don’t know how big my plate is. I just need them to treat me like me.

What is the most challenging part of living with MS?

The most challenging part is letting go of the old me and embracing the new me. And the new me can’t do half the things that the old me could. It’s hard as a male as well as a military veteran to tell somebody that you can’t do something anymore.

Like walking and carrying stuff? That ain’t happening! There are moments when you forget and jump up to grab something. Next thing you know, you’re on the floor. Those are hard days.

What helps you get through those days?

My son and my daughter-in-law send me and my wife videos of our granddaughter doing new stuff, and it just makes me smile.

What led you to become involved with Bezzy?

Bezzy is my main avenue for advocacy because new people are always joining. I have personal friends here in Reno who live with MS. We get together and discuss our situations and what we’re going through. But Bezzy allows me to do that virtually and almost 24 hours a day.

You’ll often hear people with MS telling you to journal. For me, it’s more that I need to socialize. I need to socialize with people who understand what I’m going through.

Although you know this disease is going to alter the rest of your life, it’s not a death sentence. You can survive. We can carry on. It takes a lot of adjustment, but it can be done, and you are not alone.