Welcome Debby Myers to the Window today!
Hi, everyone – it’s been a couple of years since I wrote last about my Multiple Sclerosis. Can you believe it? I left you talking about all the ways I was trying to focus my attention on anything else except…of course, the Multiple Sclerosis. I am going to start with where I ended before talking about what keeps me going on my worst days.
The best thing that has happened is the birth of my granddaughter, Joelle
Marie. Her name is a combination of her two grandmother’s middle names. The “Jo” is my middle name. My son wouldn’t tell me what they were going to name her the whole pregnancy. He would say “we haven’t decided yet.” Yeah, right…but I was so touched when I heard it. And she is so precious. She just loves Nana and Papaw too. My children say that’s all the grandchildren I get, so we’ll have to wait on my two step-daughters, who say they may not have any. Or maybe wait for my oldest daughter to get married and we can adopt some. We have eight. I’m good with that, especially since they are all such great kids! Five boys and three girls. The time I spend with them right now is when I feel the best. I push myself when they are here.
I still try to hide my struggles from my family. One day I will be a burden, but I want to delay that as long as I’m capable. Leading to a great thing that has happened in the last two years―I joined my MS online support group.
When I have questions or I’m feeling down, I can go there. Even though our symptoms are all different, somehow our feelings are all similar. We “get” each other. I’ve spent entire days in the chat room―comparing, sharing, and caring about all the others with this disease. It’s a large community and they are all strangers that have become MS friends.
Other good things that have happened. I directed and created my 20th play for Ole Olsen Memorial Theater. I made it my last as a director. I will agree to co-direct or be an assistant director, but I can’t predict how I will be on any given day. I’ve spent 25 years with the organization. It is another part of me that is changing. Last time I wrote I was working on learning how to be this new person with this incurable disease. I still don’t know how. Aside from that, directing is hard, as I’ve written about. My last two shows I didn’t have a true assistant as they both became a part of the crew. Being the Publicity Director for the board meant I had all of that responsibility too. I just can’t do the shows at the level and with the quality I want them to be. Going out on top isn’t a bad thing, but having to go out at all…is.
Finally, to update you on the Multiple Sclerosis itself…it’s progressing.
That’s the kind I have. I’ve had four more infusions of Ocrevus, which is the only treatment for Primary Progressive MS. It has, I think, slowed the progression. I’ve been “stable.” I have only had one new lesion in the four years since I was diagnosed and they found 17 lesions in my body. I have had a total of 10 exacerbations―they create new symptoms or enhance existing ones. They can stretch out for multiple days or weeks. They range from mild to serious in severity. You may also have different symptoms during different exacerbations. So, just like the disease itself, they are very unpredictable. There are only two triggers for exacerbations―stress or infection. These triggers increase inflammation, which is the biggest threat to MS. All of those I’ve had temporarily worsened the symptoms I live with every day. The last one brought on a new symptom, and so far, it’s not going away. Doc sent me for another MRI, but no new lesions. The new symptom was caused by an exacerbation.
As I sit here typing this, I am frustrated. Both of my pinkie fingers are now numb and tingly. You wouldn’t believe how much you use your pinkies! Typing is one of the times when I notice most, but anything I do with my hands is now more difficult. When this symptom came on, I was just getting over a mild case of the flu, likely the trigger. Doc says it “might” still go away at some point. Ugh! She wants another round of intravenous steroids to see. NO! I have worked hard the last several months to begin losing that 40 pounds I’ve gained. I’ve lost 16 already and now along comes those steroids. It’s all so frustrating, but losing my pinkies sunk me into a week of depression.
I am just coming out of my funk. I spent more than a week in the house. I didn’t see anyone except my husband and we didn’t even talk much. He kept asking, “You Okay?” All I did was play computer games and stare blankly at the TV.
I kept rubbing my pinkies, thinking they would come back. When they didn’t, I cried and I slept for an entire day. My pity party was well underway. It was one morning last week when I was lying in bed drinking coffee with my blank stare scrolling through my phone when I looked up and something so subtle, yet so obvious, caught my attention.
It was my own reflection in the mirror above my dresser. I looked like another person. All those times I asked myself “where did I go?” and all this time I’d spent trying to become this different version of me…wasted? I was 56 and I challenged myself to not up no matter what. Had that changed about me, too?
I glanced back at my phone. While I was sitting there scrolling earlier, I had come to the bottom of all my text messages. The name I saw on the screen when I looked down was Kurt. Kurt Schindler was one of my best friends. I started to read all the texts we had shared over the last couple of months of his life, clear up to the night before. With everything he was going through, he kept talking to me. He kept telling me he wasn’t giving up. He said he was thinking of me knowing even with MS, I was still beautiful, creative and smart. Kurt said he knew I wouldn’t let anything change who I was. Hmmm…
I got up, got dressed, fixed my hair, put on my make-up. Looking back in the mirror, I really felt overwhelmed with feelings. I sat down at my computer and started writing. I wrote four different articles that I hope to submit to magazines. I think I was more productive in that one day than I had been for at least a month. As I was straightening up my living room, I picked up the Snoopy quilt I had bought Kurt just weeks before he died. I wrapped it around me. Life (and death) brought me back, numb pinkies and all.