We kid ourselves over and over that we will learn the lessons that our bodies are trying to teach us, but nothing in life is that simple. We tell ourselves over and over that we can’t do this or that, but we keep right on doing it. We sit and nod our heads, as our loved ones reassure us, that they can manage and we have to stop pushing ourselves. We do all these things and then, we go right on and do it all over again. I have lost count of the times, that I have worn myself down, into a mear shadow, how many times I have made myself so ill, that exhaustion is of no importance, have I learned anything from any of them, well maybe a little, but clearly not enough. All my life I have been stubborn, I have been determined to learn every lesson myself, clearly I haven’t changed, and I have a funny idea that I probably never will. I have noted over the years, though, that the scale of my stupidity has shifted. I no longer climb ladders, attempt to spring clean the house in a day, or even to clean a single thing ever. The odd breakage probably had something to do with that as well. It’s odd how sobering a broken ornament becomes, considering the threat of broken bones isn’t.
If my thoughts are on the grandiose, my body has at least learned just how to put the brakes on, when it comes to my impossible schemes. A convenient set of spasms, a wobble as I try to stand, those everyday reminders that I’m not quite the person I was. So the ladders remain in the cupboard, the bleach in another and my brain busily comes up with an alternative, something more manageable, something that doesn’t need me to stand all the time, that will allow that feeling of completion, but won’t kill me, along the way. As they’re still on my mind and still affecting my body, let’s take those pancakes, as an example. Making pancakes isn’t a grandiose scheme, it’s an everyday task, it’s the normal, the sort of things that we teach our children when they first ask to learn to cook. So why can’t I do it? Simple, because I can’t make that mind shift, that step needed for me to accept, that I’m now that child, the person who can do nothing and has to have everything done for me.
The longer that I am ill, the longer that I have been thinking about this. My conclusions though are the thing that more than surprised me, and I know they are right because, we all know what it feels like, when that right answer, appears in front of you. We don’t learn. I don’t believe, that I learned a single thing about my limitations, if I had, I wouldn’t even spend time thinking about doing the impossible. I would have stopped still trying to work out a way, of making all those things possible. I wouldn’t in my head, still be creating new gizmo’s that might make this or that easier, make it something that I can do. The truth is, no matter how good the gizmo, I still would be able to do anything. So I haven’t learned, because if I had, I would just be saying OK, that fine, I won’t. If I had learned anything, I wouldn’t be torturing myself almost daily trying to do what I failed to do the day before. That’s not learning, that’s stupidity.
I haven’t even accepted my limitations, as accepting again means sitting back and not thinking. If you accept, then your not stupid. Accepting is a thought out, reasoned analytical process. It’s actually beyond just learning, as learning means you don’t stick your finger in the same flame that burnt you before. Accepting means, you take that lesson onwards in life, and by association, know not to put your finger into or near anything that is hot. A reasoned analytical process. So to be able to accept, I must have already learned, and I’ve already proved that I haven’t. I know that I have accepted my illness, that I have accepted to some extent my limitations, as otherwise I would still be trying to go up and down those stupid stairs that keep me apart from the world. So there must be two levels to acceptance, the one that we learn and the one that is a blind reaction, or is it? If it were a blind reaction, then we would do it to everything, and that just isn’t the way humans are, so something else is at play, something else, is changing our behavior.
At best, if anything, I have grown accustomed to not being able to do things. Over time, I have grown used to not having the energy, to not having the strength to do those things that I want. It has been a long slow process. If I sat Adam down, and we discussed it, he would agree with every word I have written. He has spent years pulling his hair out, trying to stop me doing, what we both know, I’m just not able to. He eventually gave up, as he learned that he wasn’t able to stop me, any more than I was. The problem is, we can’t unlearn. Once you know you can do something, unknowing it, doesn’t exist. So we slowly become accustomed to failing. We become accustomed to not have the energy, to not being able, and use to, a more sedentary life. It takes time, but just as I am accustomed to being alone all day, I am accustomed now to not rushing around cleaning everything in sight. Once it really hurt not being able to do those simple things, I still wanted to, but I didn’t. Now it’s because I am used to doing this, and this is what I do. We adapt, that is what people do, we adapt to our limitations and modify our expectations. Just like being forced into changing your line of work, you adapt, and in time, you become accustomed to it, most even find themselves happy in their new role. Disability, is just the same, just more dramatic.
Letting go, handing over the responsibility of life, is hard at first. Again, Adam can vouch for that. At first, I made his life hell, followed him around, double checking everything, but as I became accustomed to it being his role, not mine, I let go. Humans are amazing, we can adapt to anything, we may not want to, but in time we all do it. With the right attitude, we can even enjoy it. What’s better than having someone who does everything for you? Clearly, doing it yourself, but when you can’t, it’s the greatest gift in life we have. We just have to remember to tell them so, every now and then. I have lost count of the number of things that I have agreed I am no longer able to do, as logic is a powerful force, but I have always adjusted to the new reality, not learned or accepted, but adjusted. The future holds some that right now, I don’t believe I will ever be able to adjust to, but then again, I never thought that I could have adjusted as far as I have, yet here I am. Unlike the process of learning or accepting things, you don’t actually know your adjusting until you look back. At the time, you think you fighting, showing this disease who’s boss, but we’re kidding ourselves. All we’re doing is fighting the process that will eventually always win, we always adjust. As for the future, whether I like what lies ahead or not, whether I believe that I can live the way that is predicted for me, I will adjust, but how far. Is this game unending, or is there a point where we can adjust no more. As yet, I can’t answer that, but who knows, as I said, humans are amazing.
Please read my blog from 2 years ago today – 29/01/2014 – How “it” changes
There are some strange things that I have become aware of as the years of illness have passed, one more than any that you simply forget how “it” used to feel. That “it”, well it is almost everything, from how……
I just wanted to comment to say thank you for sharing this post today. I’m not up to typing much so can’t go into a lot of details but suffice to say that I’ve been really struggling to accept the things that are happening to me recently, and the decisions I’m having to face. Your blog post has really helped me today and has given me another perspective that I know will make a difference to how I face things. I’m really grateful to you for sharing it, thank you so much.
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You don’t need to answer, all I want to say is that I hope you a little peace and that you in yourself, start to feel better soon. (((Hugs)))
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It was very interesting reading your post and thinking yet about that tension between accepting versus fighting your chronic illness. I am currently in a good phase in remission so am currently more on the up side of that. I am also struggling with anxiety versus due caution which is difficult when my abilities vary within a given day let alone week. I’ve been writing a fair bit about this over the last week because my kids have just gone back to school and are at different schools and I’m needing to drive my daughter to school 45 mins away. I thought the fatigue might be the thing that gets me but it was my legs. We have cruise control on the car and we are mostly on the freeway so that will help. Soon she’ll mostly be on the train.
I try to do what I can to pull my weight and ease the pressure on my husband but have days or periods where I stop. Probably over did the walking today. My legs really ache.
You might appreciate that my dog ended up going for his first swim at the beach today. He’s 9 and I think he was actually trying to herd the other dogs out of the dangerous water but I think he might even have enjoyed himself as well.
Take care and I do relate to what you say about home being your oasis!
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Your courage to “keep on keeping on” amazes me. I don’t think I could do it, in your circumstances. I’m already thinking about what my “cutoff” will be when I become unable to care for myself. So reading this, your painful process of adaptation as ability by ability your world constricts…I am struck by your bravery. I don’t think I’m that brave!
Then again, I’m alone, have no friends, live in a camper, travel the country….these are my defiant last acts. I love to travel in impossibly remote places, just me and my personal protection dog, and I set myself the challenge of getting out again. I have to get out, you see, because although I depend on my dog for security, companionship, and love, she also depends on me–for everything. So this drags me on. She gets frustrated with me that I can’t go on long hikes anymore, or throw her ball more than a few times; but she’s very kind, and has come to know that on some days, the game of “catch” means I simply open my hand and drop the ball, and she catchers out and puts in back into my hand. Eventually, of course, my hand will go into spam and the game must stop at that point, but at least we have had that bit of fun, and I tell her there will be more later; and there is.
My son just recently sort of divorced me, as he thinks this road trip of mine is insane, and since he is a very high functioning autistic, if something is illogical then it’s reprehensible. So he invited me to visit at Thanksgiving, but then told me to leave, because he couldn’t stand the changes he saw in me. I’m no longer the skier, horse trainer, emergency physician, that he grew up with. I’m now a person who finds the most comfortable chair and curls up in it, smoking marijuana to ease the spasms and blunt the pain. Of course he smokes too, but for different reasons. It helps his brain settle.
Oops, dawn has broken and my protectress needs to go out. We are camped in a swamp near New Orleans, so I have to put my mud boots on, and my stick will make me feel slightly more secure about the alligators.
It’s all about the alligators.
Sending love, wish I were there to help with the pancakes..❤ Laura
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I totally understand your road trip. For some of us, being alone can be a hugely positive thing. I have Adam, and my friend Jake who phones every week, my daughter, when she remembers me, but I to am alone a lot. Our lives have taken very different routes, but that doesn’t make one right and one wrong, it just makes the different.
I don’t know if I am brave, or just to stubborn to give up, but like you, I have a cut off date, like you, I don’t know exactly when. I guess, we’ll both know when it arrives. For both of us, regardless what other think, what matters is today we can cope, today we are happy, so we live for today.
Take care 🙂