Kyle’s World

Sunday evening.  Carol is asleep.  For the past four or five days I have been dealing with an old physical problem, one that has not really bothered me for some time.  But it decided to remind me that it could still make my life miserable.  I have been fearful of the return of this condition because in my present circumstances I cannot afford, Carol cannot afford, for me to be disabled.

I want to locate the problem in my back, but that may not be clinically accurate.  The symptom of the problem, though, is clear enough, a shooting pain that accompanies the slightest movement, such as sitting down, or getting up, or walking, or picking up something, any such ordinary motion produces a jolt  strong enough to make me grunt and stop whatever I am doing.

That nexus of that pain, as best I can locate it, is my lower right back and right hip area.  It definitely does not feel like a joint issue.  Rather I’d guess it is a soft tissue problem, a tendon or ligament stretched or strained.

This condition first introduced itself to me when I was in my thirties.  Typically, it would slowly ease up over a couple of weeks.  It was largely indifferent to rounds of physical therapy, or treatments from chiropractors.  Muscle relaxers didn’t really help much, but a scotch and soda sometimes had some effect.

Now, however, I just have to grit my teeth and try to be careful although the motions that bring a stab of pain are so inconsequential there really is no way to avoid them altogether.  Advil, which I don’t recall ever trying in the past, seems to provide a few hours of relief.

All of this provides the immediate context for what follows, and which I will begin writing for as long as the Advil enables me to sit and hit the right keys on my laptop.

In reviewing the blog that was to be posted yesterday, although written as usually is the case some time ago, I was struck by how prescient Kyle had been.  His goal was to condition Carol to be able to stand supporting most, if not all, of her weight long enough to then turn and sit down.  This would be the essence of the transfer from bed to wheelchair, and from wheelchair to bed.  The key was for her to cooperate in sitting up so that her feet would reach the floor.  She would have to be made to overcome a primitive impulse to throw herself back.  It became clear that she would not do this by herself.  But she could be made to accept a hand behind her neck pulling her into an erect sitting position.

That has been achieved.  Sometimes she vocalizes her unhappiness with being made to sit up this way, but most often she accepts the pressure that achieves this movement.

The next step is to get her standing.  The whole point of this procedure is to avoid having to lift her up.  Once she is sitting, her feet must be on the floor.  Sometimes she needs encouragement, pressure on her thighs to get her legs down and feet grounded.  Then, with verbal encouragement, and providing a little lift, she rises.  Once on her feet, she might need to be steadied, but she is bearing most of her weight.

When she is standing in a kind of embrace, my arms around her, we  do a little two-step shuffle to turn her around so that she can sit again either on the side of the bed or the seat of the wheelchair.

Throughout this procedure we have a medically necessary physical intimacy that is both a mocking shadow of our marital physicality but also a present time version that warms my heart.

In any event, I have learned how to do this transfer fairly well.

But now that my—I’ll call it my back– is barking at me, performing this process can be problematical.  I don’t want a shooting pain to hit me at any point where I need to be steady.

So far, with the help of the Advil, I have managed.

Will pause now.  I expect to continue later tonight or tomorrow.  In the next section, I thought I would describe a typical Sunday morning now that Kyle’s goals have been reached.

Late Tuesday afternoon, classical music from the Interlochen radio station filling the room.

On the way back from town this afternoon after grocery shopping, my car sound system was playing music from my old MP3 player.  More specifically, it was playing albums in alphabetical order.  The browse album function does not respond when the car is once moving, so I let it do what it wanted to do when the album I had chosen a couple of days ago ended.  That album was Ray Charles’s Genius Loves Company.  So the alphabetically minded system moved on to Coltrane’s Giant Steps, which accompanied me back and forth to town. It finished when I was almost in sight of home, and transitioned to Paul Simon’s Graceland as I drove into my driveway.

During my drives back and forth to town I was struck by Coltrane’s music in my ears, its mournful, sometimes seemingly nervous complexity, and outside my car  the hills, orchards, and blue waters of the bay flashing by in a restful panorama.

A striking contrast. That somehow suggests how Carol and I now live betwixt and between our then and our now, not quite finding our footing, just as the probing, unsettled and unsettling music coming out of Coltrane’s horn is at odds with a landscape that speaks of eons of continuity.

Carol is asleep in her bed, the dog dozing on the floor.  A combination of Advil and the activity of a shopping day seems for the while to have eased my back discomfit.

And so I’ll do a bit of writing picking up where I left off.

Which was to describe a typical Sunday morning in my world as created by Kyle and his wonderful chair.

Sunday mornings begin the same as the other six days.  I usually rouse somewhere between six and eight.  I rouse.  I do not get up.  I am not a naturally early riser.  But the combination of sunlight working through the blinds, and my awareness of Carol sleeping in her bed a few feet away begins my waking.  Sometimes Carol vocalizes in some fashion.  When she finds her left hand through the rails on her bed, she becomes afraid, perhaps because she cannot easily guide the hand back out.  That causes a cry of distress.  Other times, she laughs at some thought.  Most often, though, what I hear is her labored, open mouthed breathing.

Which in its forceful expression of life is a welcome sound.

Once up, I greet her and assess how much work I will have to do to ready her for the day, and then do whatever is necessary.

On the other six days, I would then effect Carol’s transfer to the chair, and head into the kitchen for breakfast.

That is the first tangible indicator that we are in Kyle’s world.  Previously, I would just go myself into the kitchen to prepare Carol’s breakfast and then bring it back to her and serve it to her while she remained in the bed.

But we’re talking about Sunday.

On Sundays, I throw some clothes on, leave Carol in her bed, get in the car and drive the four and a half miles to the market where I buy her blueberry muffin, and, if I am lucky, the Sunday Times will have arrived, and I will pick that up as well.  If not, I resign myself to reading the paper online, and head back home.  All of that takes about fifteen minutes, a brief enough time to leave Carol in the care of the dog.

Back home, I now move Carol into the chair and then wheel her to the kitchen table.  Her breakfast is the same as other days—melon or banana, breakfast sausages, juice—and the muffin in place of the usual toast with blueberry jam.

And because it is Sunday, after serving breakfast to Carol, and then feeding the dog, and letting her out for her morning constitutional, I toast a frozen bagel, which I had left out to defrost before my trip to the store.

For me, a bagel on Sunday morning is a requirement.  Even a frozen bagel.  Fortunately, the market stocks a product that claims to have been baked in New Jersey, and is actually an almost acceptable substitute for the freshly baked ones I grew up on.

The radio is tuned to Sunday Morning Baroque while we all eat.  When we’re done, I wheel Carol back to the living room, and turn on the old boom box sitting on the piano away from the interference of the cordless phone so the music can continue into the room with us.  I read the Times if I have it, or leaf through the Sunday edition of the local paper if I don’t.  I’ll get to the online version of the Times a little later.  When Carol settles back to sleep in her chair, I wheel her to the bed and transfer back into it.

And thus is our Sunday morning.

In Kyle’s world.

Which is different in the fundamental way that Carol eats breakfast in the kitchen, as do I.  We are functioning in a way that resembles our pre-dementia life.  The chair makes this imitation possible.

It is one more stay against the inevitable conquest of the disease.

And I am very happy for it.  Carol, too, seems more alert and more of the present moment.

The dog has not offered her opinion.  Wherever we eat she waits for something to fall to her on the floor.

Sometimes I am envious of a life governed by such simplicity.

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3 Responses to Kyle’s World

  1. Kathleen flores says:

    It is nice that carol still enjoys her blueberry muffin

  2. trudy carpenter says:

    Hello, Steve. You still describe moments of pleasure in your difficult world, and I hope you can hold onto those.

  3. Wendy Warren says:

    I have Genius Loves Company. Lovely!

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