4 years in, 2017
“One new, active lesion.”
Those words stung more than I thought they would, more than they probably should. I felt that sick feeling, that I haven’t felt in about 4 years, since I was first diagnosed with MS, deep in my stomach.
I don’t know why this hit so hard. I have had 2 fairly obvious MS episodes in the last 2 months, and I knew that I had stopped taking Tecfidera in February and not started back up until October. I knew that MS wasn’t going to go away, and that it will probably get worse over the rest of my life. I knew that I was and am lucky, and don’t have an extremely severe case of this horrible disease. I was expecting worse news yesterday, to be honest, and if you had told me going in that I would hear what I heard from my doctor, I probably would have been happy with that news.
But, for some reason, I left the UCSF MS Clinic, drove straight home, skipping my work happy hour that I could have attended, and sat numb on my couch for a bit.
Today, I woke up feeling pretty shitty, almost similar to how I felt a few months ago, when one of the most meaningful, yet sporadic, relationships of my life came to an official end. I felt like there wasn’t hope, and that I didn’t want to get out of bed. My aches were magnified, my fatigue apparent at 7am, even though I fell asleep before 10PM last night. The hope I’d talked myself into for 2017, based around my job, and my plans for my personal life was gone.
I think the problem with chronic illness, that I haven’t figured out how to deal with, is the loss of hope. The idea that bad times are coming, and you have to be mentally prepared to never feel great again is always in the back of your head. When times are going well, or when I drum up motivation, I can stare MS down and tell it to “fuck off” easily. “I’m going to beat you, and I’m living an awesome life despite you,” I say when I think about this stupid disease.
When times go bad, when you go through a breakup, when work sucks, when you have money issues, this changes rapidly. MS is the monster at the end of every tunnel. It’s the thing in the back of my head terrifying me, when I meet a girl that I start to like. It’s the thing pushing me to say ‘fuck it’ and do something stupid. It’s the thing that creeps into every decision I think about for what I want in the future.
Do I want kids? The answer was always no, but in the last two years I did. Now, I’m not sure if that was situational. Would you want to parent in a wheelchair? Do I want to live in another country for a bit? Yes, but what about healthcare? How does that work? Do I want to travel as much as I am? Yes, because for how long can I do it in the future? Do I save money? Yes, because you’ll need it, but maybe not, because what if this goes bad? Do I want to quit smoking? Definitely, because this will go horrible if I don’t, but…. why care?
It bleeds into relationships, making me passive and afraid with any women I end up liking, afraid to ruin my ‘last chance.’ With friends, you find yourself wanting to be around people that don’t let you wallow, or feel bad for yourself. That is until you start to feel bad for yourself, and then you get mad at people that don’t understand, that push you when you need to just give up for a bit.
It bleeds into your own self worth. You wonder why you are so lazy and you wonder if all of this is in your brain. You wonder if you are taking advantage of the disease when you feel tired and back out of doing something you should be doing. You look in the mirror and wonder if you’ll ever get to live the life you dreamed of, whatever that may end up being. When you’re a practical person, who lives and unpractical life, you can easily look at the odds of what your future may end up being, and it’s not a bright and cheery image.
So when I was sitting the doctor’s office, I wasn’t thinking, “You stopped medication, you gave up the healthy lifestyle from the first few months of the year, and you quit trying to fight MS, and went back into denial. These MRI results are actually really uplifting. The doctor said my brain size isn’t shrinking, which is a sign of the more rapid/chronic MS progression. This is the wake up call you need, without having it be as horrible as it can be.”
I was thinking, “You idiot, you just made this worse, again. Wait, the doctor said ‘yet’ when he was talking about my lack of chronic damage or brain shrinkage, does that mean it’s definitely coming? He just said you have a lot of damage, and that’s not going away. Did I create most of that when I took a year to get diagnosed, and then another year to get on medication? Stop this, you asshole, you just went 3 years not taking this absolutely seriously and are still walking and in relatively good shape. Balance, vision, hearing issues that you have are nothing compared to some other people that DID EVERYTHING RIGHT after their diagnosis, you don’t deserve to be OK.”
2016 was a shitty year if you look at it with the mentality of the person that sat in the doctor’s office yesterday.
2016 was a fantastic year if you look at it with clear eyes and the positive attitude that I need to hold on to.
2017 will be a horrible year, if I am that person that drove home and sat silently on my couch last night.
2017 can be another amazing year, if I just experience it and let it happen.
You’re a happy person, you love life. Go do it. Fuck MS, but love MW. That’s the goal for the new year. No bullshit resolutions, no bullshit talks about hoping I can do something. My life is pretty great, it should be even better. The thing holding it back from being exceptional isn’t MS, some woman, or anything else. It is, and always has been Matt Walker. It’s time to realize how to care about him.