I’ve had snippets of this post brewing in the back of my mind since last fall. Did I ever admit to procrastination?
It wasn’t until today, after having taken part of the banister off the wall yesterday in an attempt to control a fall during a period of blacking out (POTS – a kind of orthostatic intolerance, and a partial branch bundle block along with other non-life-threatening electrical glitches) that I saw how to better (I hope) write on this topic.
I again caution: If you are newly diagnosed or if you do not have symptoms mentioned here, please do not assume you’re going to end up like me! There is every reason for anyone reading this to hope for improvement!
Now, preface over (I can just hear the sighs of relief), onto the topic.
My husband and I often share grins over the behavior of our cat; especially when he’s acting the mighty lion over something silly. Sometimes, though, it’s not so silly. He’s an indoor cat but has access to our back porch where, three times now, he has managed to kill a vole seeking shelter when the weather turns to winter. He’s thrown himself at screens wanting to get at birds. My husband and I turn to each other, seeing our fuzzy companion as the skilled predator he was designed to be, and say “We can’t blame him for being what he is.”
Living in this semi-rural area, we are able to keep chickens. They provide us with fresh eggs, much amusement and will eat out of our hands. They are also capable of killing a newcomer to their roost. “We can’t blame them for being what they are.”
(The fish mentioned in the title aren’t forgotten, they’re just waiting their turn.)
So, how does this extend to me? I cannot blame myself for being human. I cannot blame myself for being ill. In those respects, I cannot blame myself for being what I am. I can, however, think hard and make efforts to do better; yesterday and the days which preceded it have proved to me that I have much work to do in meeting that responsibility. It took a literal falling down on the job to make me see that I’d been figuratively falling down on the job for several weeks – just when I’d thought I was worthy of superhero status.
We’ve had a home repair job going on here for several weeks. It became one of those odysseys that begin with one minor repair revealing a bigger problem revealing a larger one yet. That little ten minute repair revealed a need to dismantle and rebuild our bathroom. Remembering our youthful days of working side by side taking on any job that needed doing, knowing how well we work together and how expensive it would be to hire someone, my husband and I agreed that we could do the work ourselves.
Wait, don’t laugh quite yet, here’s the biggest “DUH!” moment of all - I shopped for materials with him while sitting in my wheelchair! “Yes, Dear, I will help all I can” said the woman who couldn’t even stand up and walk through the store. Reality check on aisle 9, please!
I know, I know, 21 years with this disease…one would think I’d have more sense! It’s a good thing I never said I was perfect. Well, I never said it out loud, anyway.
By my actions over the last two weeks, I was saying it, though. Though my husband actually did need my help sometimes, I began to feel as though nothing could be done without me in the middle of it. Somehow, with me there, the result would be better. Since I couldn’t stand, I worked on the floor, since I couldn’t stay on my knees, I sat, when I couldn’t sit, I lay on my side to set tiles or mush in grout (“mush” being a technical grouting term.) When an intricate piece of tile setting was called for, I completed it even though dizzy and nauseated. I resolved that I was done for good with what I could do on the project. I knew I was so deeply down the well that I’d be lucky to see daylight again.
The next day, yesterday, I deliberately put on a nightgown after showering to add insurance that I’d do what I knew I must – rest and stay out of things. I announced my intent. I had my husband’s understanding. But there was just one more thing that only I could make better – yep, you read it right, complete arrogance there and could not leave well-enough alone; a lesson I should have learned decades ago since I’ve wrestled with it all my life. So, I decided I could do just that one thing and began to work on it, nightgown and all. Then it happened, “I’m going out” I remember saying and stumbling with jigsaw vision out of the bathroom to the hall (another poor choice, the top of the stairs are right there.) Having dealt with this kind of thing many times alone, I knew I had to control the fall and as my legs went, I grabbed the banister and managed to end up safely on the hall floor.
The details of the project are endless; in fact, as I type this my husband is painting over the patchwork we had to do and preparing to reinstall towel bars. The difference today is I am resting and reflecting on being what I am; a woman in her 50’s who has been seriously ill for 21 years and a monastic soul who has a long way to go. A woman who remembers what it was like to be physically strong, but who has lived long enough to know there are far more important things than the physical. A woman who has been especially foolish lately and made herself so sick she can’t make any choices at all except to share her foolishness in the hope of helping others be wiser than she.
Oh, and that one little thing that only I could do? I messed it up and my husband had even more work today to correct what I’d done in arrogant stubbornness.
Wait, I forgot the fish you say? Well, perhaps you didn’t say but I have a little more typing in me before I go. In the place where I spend most of my time, I have the blessing of an aquarium where five beautiful fantail goldfish reside. I can see them now, contained in an unchanging place, sometimes coming together to touch, sometimes swimming or drifting alone. Food appears and they seem joyful. Food eaten, peacefulness returns. They never seek to be somewhere or something they cannot be. There is no discontent, no unrest. In that quiet blue place there is only –