I am the man with a plan, a man of action. I plan everything. I have alternates, contingency plans, back ups and fall backs. I research, do my due diligence. I even plan to have plans go sideways. Those moments when all you can do is throw your hands up and just go, F**k it, I tried. It's how I deal with the world at large. Break it into smaller, manageable pieces.
Unfortunately, the world doesn't always co operate. Some times all you can do is nothing.
When my other half broke the news of his diagnosis two weeks ago, of course I started to plan. What did this mean, what were our options, how much time did we have, what would help? I Googled ALS, contacted health care workers, did a tentative time line, found alternative health care methods, even tentatively planned a couple of trips. It's how I cope. Except...
There isn't really any course of treatment. Sure there are things that help some people but it affects everyone differently, progresses at it's own rate. Doesn't care about my time line, my research or alternative health care practices.
The other thing is, he doesn't want to talk about it. At all. It's not denial exactly, he knows. He watched his mother go through this. He knows exactly what it means, how bad it will get, how devastatingly fast it can happen.
We've spent the time doing nothing. No planning, no talking. Just being together. I don't think I have ever felt so useless, so out of my depth. For the first time in my life, I'm afraid of what the future will bring.
My heart knows I'm not being useless. Just by being close he's drawing support, strength and comfort from me. I'm helping to ease his fears.
My head is telling me something completely different. We're wasting time, he's still relatively healthy, we have to cram as much life as we can into whatever time we have left together.
Then I look into his eyes. I see the fear, the uncertainty, the sadness. I can do nothing. I can just be here. Reality will intrude regardless so if this pause is what helps, so be it. I can be the man with no plan.
I am so sorry. ALS is really scary. I am a cancer survivor and what I can say is that your being there is everything even if you feel you are doing nothing. I know you "know" this in your head but know it's also true in the heart. My husband felt the same way and still probably doesn't get how much it meant that he was just there, doing "nothing," watching me go through it. Just remember that what you are not doing means EVERYTHING.
ReplyDeleteYou ARE doing something. You are being there. You will plan when you are both ready. You will jump to action when required. You will have good days, and very bad. And we'll all be here as a sounding board.
ReplyDeletexox
Oh Paul. Yes, you ARE doing something. Just be there, ready when he's ready. Do nothing or something....whatever is needed at the time. These things are one day, one moment, at a time. You will have to tweek your thinking on planning. I do pretty much no planning anymore.
ReplyDeletesometimes doing nothing is everything.
ReplyDeleteall the best.
My sweet friend my heart goes out to you. I'm sending you love and peaceful, restful thoughts. You are so strong, just to be able to write this post, you are magnificient. I know that your partner is finding complete strength in you. Every minute is precious. Every moment is valuable,none more valuable than the next. So just be. Just love. It's okay. It's more than enough.
ReplyDeletePaul, I read this before and was stopping by today because Leslie mentioned you and I wondered what you have been up to. I hope, all is as well as can be expected. Miss you and your recipes. Take care and hang in there. Sometimes, not having plans is not such a bad thing.
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