Multiple Sclerosis is a horrible disease. There's an endless list of debilitating symptoms to deal with all the time. Especially depression. Always leaves you wondering if and when progression will get worse. So what do you do when the nightmare comes true and things get worse? Well, the dream has come true for me and I want to share some examples of how I've been able to cope and continue enjoying life.
During my working years in 2000s my progression started rapidly getting worse. Seemed like every other year I was getting a new piece of DME (Durable Medical Equipment). I call these my "DME years" and I needed the tools for safety and to continue working.
When I started walking like a drunken fisherman, I bought a walking Redwood cane with a shiny brass Cobra on top. Then, when it got even more difficult to walk, I decided to buy a souped-up walker so I could get back and forth to the office. The walker was dark red and became a bench when I put the brakes on. At this point, things got awkward at work but that didn't stop me from becoming a successful salesman of EMR (Electronic Medical Records) software. I took pride in my job and formed bonds with my coworkers as well as clients. I did well balancing work and living with a debilitating disease getting worse.
Eventually I got fitted for a manual chair because I started fatiguing quickly and was losing my balance. The chair was a shiny black Ti Lite that only weighed four pounds. At the time, that chair made my life so much easier, saving me energy and not having to worry about falling unless I went too far back while popping a wheelie. MS kept punching me in the face, trying to knock me down, but I kept fighting back. I still lived life the best way in that I could.
Progression just got worse. Plus, I lost my job, and my truck, and eventually I had to get set up in a power chair. Three more devastating blows that slowed me down, but I just wouldn't stay down. My TDX SP wheelchair actually sped things up and opened new doors. I signed up for Access Rideline, a shuttle service in Seattle, and learned the bus routes. I started volunteering at the Seattle Aquarium learned about all the wildlife of the ocean, and then educated visitors. I also started volunteering at the Southeast senior center teaching them how to use "the electronics" and joined their chess club. I still play there to this day and formed several friendships.
My arms and hands started to get weaker but that didn't stop me from my favorite hobby, taking photos. For Christmas my parents got me a Samsung Galaxy smart camera with a bendable tripod that I could hold onto with my weak left hand to line up the shots. The camera also had voice recognition so when I had the picture perfectly lined up, I'd say "capture that" and it would take a picture! The camera was amazing and made taking pictures a lot easier. I spent a lot of time taking pictures of the giant Pacific octopus at the aquarium or traveling up and down the Canal Trail in Interbay taking pictures of sailboats and cormorants during their mating season. I even submitted some of my pieces to the Swedish MS Art Show where they displayed them in the middle of the Armory at Seattle Center for everyone to view while they got food. I volunteered for that event as well talking to visitors about the artwork or answering questions about my mysterious disease. Swedish threw a viewing party at the end of the show, so all the artists could get together to meet each other while we ate cookies and tried to win raffle prizes.
Suddenly the progression of my MS got so bad I lost most of the functionality of my arms and hands altogether. Presented with yet another challenge, I figured out a solution. I worked with my OT (Occupational Therapist) plus another DME vendor and got fitted for a headset so I could drive my power chair with my head. Problem was the headset wouldn't be ready for two months! So I was stuck in bed during that time but I didn't let that bring me down. I stayed positive and thought of starting a GoFundMe page to raise money for a wheelchair van. This helped me pass the time while I was waiting for the headset. The response was overwhelming. After only two weeks I raised all the funds that I needed get a used Town & Country minivan. I call her Black Lightning. This brought me great joy and helped me deal with another MS progression setback. When I finally got the headset back, I learned how to use it and I was back in business. Then I took Black Lightning out to different accessible trails in the beautiful Northwest. I used my new headset to drive as fast as I could down a paved path surrounded by evergreens.
I can't write this story without mentioning importance of accepting help and finding an excellent support system. Since my progression has gotten so bad, I need help with everything - tasks from eating and dressing, to even going to the bathroom. MS kept beating me up, but I found a solution for that too. I started working with a team of caregivers, including my sister, that help me with everything. I'm devastated that my life has come to this but I have no choice but to get the help I need. Now I can stay in my own apartment with my cat Bootsy, continuing to live my life the best way I can, even though I'm severely beat up by MS.
I can't stress enough the importance of being a part of some kind of an MS support group. Being around others challenged with the disease like me has helped out tremendously. I've been lucky to get my care from the Swedish MS Center in Seattle which has groups like The Adventure Club, where I got to go camping on Blake Island just outside of Seattle. My favorite group has been the MS Writing Group where I've learned how to become a better writer and shared my personal stories with everyone in the group. The experience has been very therapeutic and I've bonded with everybody. I've meet so many wonderful people coping just like me by the joining these groups. They're like my "MS family". Just another way MS has opened up doors for the better.
So these are only just a few examples in my life that I've been able to deal with this horrible disease. You may not be able to control the orange Beast but you can tame the evil monster. There may be an endless amount of challenges but look at them as opportunities. You just need positivity and patience. Then I guarantee you'll learn to adapt and live with MS. Find internal peace. If I can do it then I know you can to. Just don't give up. Try to turn lemons into a wheelchair van. Even though you've been dealt a bad hand you can still win in this precious life.
You never know what each day will bring you. I mean just yesterday I drove around Seattle and someone gave me a Neon green polo shirt and some chocolate frosted donuts with sprinkles. Now that's a pretty good day and I couldn't have made it happened if I gave up. You can still do whatever you want to do even though you have MS. Might take you a little longer to complete your goals but anything's still possible. Believe me when I tell you my life has not always been a bed of roses but when life gets bad I always look for that beautiful bouquet. You should try it too. So suck it up and find your own effing happiness.
Author: John Mistur
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