Frightening. Thought provoking. Terrifying. Laughter. Tears.
These are the thoughts, the emotions that I felt while finally finishing the documentary When I Walk by Jason DaSilva. We started this two months ago when it first aired. Me being myself and my husband J. A small part of me didn’t want him to watch this. I knew how difficult it was going to be for him to see it. Another part of me wanted him to understand what I felt day after day, even though Jason’s diagnosis & experiences were more severe than what I’ve dealt with over the 20 something years of my diagnosis.
It was too much for me at the time. There was so much more going on. So I set it aside.
It was time to finish it. I knew it would be painful to watch. I wanted to reach into the screen and hug both Jason AND Alice. Alice stood out for me for her selflessness, for her deep devotion to him even though he was already deep into the physical and mental symptoms that MS can cause. Sure, she was already familiar with it to an extent because of her mother, but she then went and fell in love with this man who was PPMS which is the extreme on the MS stratosphere and she stood by him. She loved him, took care of him in his darkest times. She married him and lived her life. I worried briefly while watching the documentary that people/caregivers of those with MS would come down upon her for at one time need to be free, to go do what she needed to do, what she had done so often before being with him. I turned to J and told him ” I’m not mad, I understand her. This is why I give you your freedom to do what you need to do. I won’t hold you back”.
It’s painful for those of us with these illnesses that have little hope of improving. Me? I’ve been RRMS since 94(officially) but I had symptoms for nearly 4-5 years before this diagnosis. It’s 20 years officially in a few weeks since I was diagnosed. I always speak of it to others as the date when the symptoms first appeared. It feels right because it’s so hard to diagnose. Or in my case, I had no insurance so I suffered until I was able to finally see doctors without being charged an arm and a leg. Which sounds funny, because now that’s precisely some of the body parts I’ve lost along the way with this illness. Not literally. They’re just hard to move some days.
It’s not formal but I’m fairly certain I’ve entered that stratosphere of SPMS, which is the gradual progression of RRMS. My doctor marveled for so long over how far I had come, especially since I was one of those skeptics who wouldn’t take the medications and who took them very briefly over intervals throughout the years. The side effects hit me so hard I couldn’t function.
Granted after 20+ years I’ve had some serious setbacks. Some physical, now some emotional as the MS does take a toll on you mentally after a while. For me it’s panic attacks. I’m afraid of driving and the circle around me has shrunk. It upsets me on a daily basis since some days when I get in my car to go to the grocery store I’m not sure if it’s going to hit me. I can travel to my daughter’s school and the immediate neighborhood with no problem. But some roads provoke the issues.
I’m exhausted all the time. I hate going up and down stairs. I’m afraid to go running or exercise because my legs feel so weak afterwards. I can’t do a lot during the summer with my kids because the heat becomes unbearable. My vision has become horrible. And like the driving, I have good days and bad days with it.
I’m not going to lie, so many times over the years, especially the last two, I’ve given my husband the option of leaving. I don’t want him to deal with me like this. I don’t want him to be subject to my bad memory, my irritability, or ability to not want to get off the couch for a few days when the heat is unbearable. I feel like a failure during these times. He however, has told me he’s not going anywhere. Some days I’m happy when he says this, there are others I feel guilty. Because I feel he deserves better.
Yet, isn’t that what we who have disabilities, illnesses think and feel often? We have to get past it somehow with our self-esteem already taking this hit, we have to find a way to still love ourselves. I try. I really try. I miss writing. I don’t do it as often and when I don’t it takes me a while to realize how much I’m suffering. But my mind works slower, my thoughts are many, my fingers can’t keep up.
For me, this documentary opened up a lot within me. I’d been avoiding the meds for so long. Rather I’ve had horrible experiences with them and though I’ve had the new drug sitting in my cabinet for three months I’ve yet found the right time to re-start it. The tecfidera.
We decided after watching this documentary tonight that I start October 1st. Especially since I’ll be on the lowest dose possible for a long time. I can’t put this off anymore. I can’t get in my car. My eyes are failing me. The other day as I was sitting here my left thumb started convulsing. Not to mention I just may be having seizures again, of which I had on a regular basis from the time I was a year old until my late teens. There are little signs, signs I’ve called my mother with often trying to figure out if that’s what’s going on.
Lately I’ve felt like the neurological enigma.