It's been a while since I wrote anything about our dealing with ALS. Partly because the move and holidays have eaten up all kinds of time. Mostly because I'm struggling with it. Until I can figure things out, it's hard to put thoughts to words.
I thought I would be facing depression, fear, tears and sadness. I wasn't prepared to be feeling so much frustration. Jaw clenching, teeth cracking, tongue swallowing, frustration. Not so much with the doctor or the medical community but with my partner.
It took me a little by surprise how badly I took the confirmation we got from the specialist in December. I guess sub-consciously, I was really hoping it was a mistake. The doctor was quick to reassure us that it was in the very beginning stages, almost imperceptible nerve damage, presenting in it's least aggressive form.
Knowing my partner the way I do, I asked what we could expect in the near future. What would this mean for our lives? No guarantees, but basically, not much change. He should go back to work, to the gym. Keep active, resume your life as much as possible. There is a predictable progression of symptoms. You won't go to bed having trouble walking and wake up unable to swallow. It just doesn't work that way. He even told us some of the symptoms my other half has been complaining about have nothing to do with his condition. As good as the news is going to be all things considered.
As upset as I was with the confirmation, I was also encouraged by what he told us. There was time, life could go on. We could make plans, maybe not 10 year ones but you know what I mean. Doing Italy this September shouldn't be out of the question, we could plan at least that far ahead.
What happened?
Two weeks later he bought a cane to walk with and won't leave the house without it. Two half days a week at work, no gym. Most days in bed until after noon. Then sitting on the couch for the rest of the day. Taking sleeping pills to sleep, then staggering around the house higher than high. Complaining about the same things the specialist told him in no uncertain terms aren't symptoms, or happening yet. And that's the kicker, yet.
We will face these things eventually. It is unbelievably frustrating to watch him doing exactly what the doctor told him not to do. I'm getting information in pieces. I was there for the specialist appointments, but not for his GP or ALS counsellor. He's taking what he wants to hear from each and creating something that just isn't so.
I don't doubt for a minute that he believes himself the next best thing to helpless. Just because he believes it doesn't make it true, yet. But it will. And I don't know how to help.
We don't talk, we argue. I don't know how he feels. I'm just being pushy, mean. But here's the thing. We've been down this road. An emergency room visit because he couldn't breathe. Even packed a bag prepared to stay. No, not ALS, an anxiety attack. Relax, go home, here's an appointment with our anxiety clinic. Cancelled. Don't need it.
A present, my other half is his own worst enemy. I can't get through to him. He doesn't believe anxiety, depression and fear have real physical symptoms. And the clock is ticking. There will be a time when we are facing all of these things, it just shouldn't be yet. It's robbing us of enjoying or making the most of the time he has.
That's the crux of it. Time is an issue. What if by being patient and allowing him to work through this on his own, I'm harming not helping? On top of everything, I feel guilty for pushing as much as I do, not being the sympathetic shoulder to lean on. There isn't an easy answer.
I'm resigned to the role of stern parent, rather than partner. A shift in our relationship I'm not overly thrilled with either. Ultimately, I can't make his decisions for him. He either will or won't come to some kind of terms with this. Sometimes all you're left with is waiting, with teeth clenched, hoping for better days.
