There’s this moment when Travis looks at me and says “you aren’t allowed to die before me” and my heart contracts. I was always going to die before Travis, I am 16 years older than he is. Still, this moment. We have not told the younglings yet – they are so very close to the end of their finals that I want them to focus only on that. We will tell them after.
Gabriel’s death was the last big adjustment and it came all at once. This adjustment, it comes more slowly. I am tired today and I notice that my right eye is less clear and my left leg is a bit numb. I can get around, work, haul my suitcases, move in and out of cabs, but my vision is a bit murky and my leg is a bit numb. It’s annoying and a tiny bit uncomfortable. This has happened before but I could blame it on something else. Today I know I have MS.
I think that this diagnosis shall be an adjustment of inches.
You don’t die of MS. You die of all the things that you always thought you would die of. MS is not a killer – merely a thief. I inventory my movement and sensations each morning. I check to see what might have been stolen from me.
I make the adjustment in inches. I accept that I am tired all the time- perhaps because of the MS fatigue or perhaps because I wake up in the middle of the night in a cold sweat, worried about a list of things – cognitive difficulties, about muscle spasms, about jumping eyes, about when I can’t see, can’t walk, when I require full time care.
I worry about Mr. Spit who seems to get the raw deal of one of my problems – a wife who cannot give him children and now with a chronic and degenerative disease. I wonder how he will cope with this too. I have been nothing but a raw deal for him and there’s not a damn thing I can do to fix that. I am not the wife he thought he was getting. Mostly what he’s getting is the short end of a lousy stick.
I am snappish with my staff. Pre-occupied, unable to fully caretake them when I am exhausted myself. I am trying to carve out a nap time each afternoon, to appear capable and competent the rest of the time. I don’t want the minion to think about how this might affect me. It’s not his job. It is a struggle to hold it all together. I lose my temper and then shrug my shoulders at stuff, unable to care.
I worry about the nieces and nephews and how they will worry and how I can ease their fright, especially when I cannot ease my own. I don’t have any answers to give them. I can tell them that you don’t die of MS. I can’t tell them when I won’t be able to walk. I can’t tell them if I won’t be able to see, to read, to knit. I can’t tell them what will happen to me.
I wish I could read about MS and not panic. I read about a chapter a night, before I can feel my heart rate rise and cold sweat bead on the back of my neck. I wish someone would come along and tell me that it will be alright. I want to be wrapped up in cotton wool, have all responsibility and decision making authority taken from me. This frightens the living hell out of me. I wish I didn’t have to pay attention to how I am feeling, I wish I didn’t have to read about the side effects of drugs and decide who to tell about this thief.
And there goes another inch. Another adjustment. Another way in which I hold my head up and realize that I have a chronic and degenerative disease and my life is changing, even now. I move slowly to give myself an MS lexicon. In my head I say that there are some great days, when everything is as it was; good days – like today when I am a bit numb, but I still function and then there will be the not so good days. The days when the disease intrudes and I have to confess that I need help or I simply cannot manage something.
The days when MS takes more than an inch.
I wish I was better at this. I wish I had more courage, that I did not spend so much time overwhelmed. I wish I was not so angry and resentful, I wish I could find a way to accept that what will be, will be. I wish I was not caught up in trying to hold it all together while wishing someone would take care of me. I wish I swore less and smiled more.
I will die before Travis. Long before that, when I most want to hold his children and chase them around, when I want to use my hands and feet to show them things, to teach them what they need to know – long before I am dead, in some sense I will have that stolen from me. And I think about that, about the future and I have no answers and no idea and I don’t know what to do.
Wish I didn’t have to give an inch.