Making Peace With The Clock

ejourneys

Making Peace With The Clock

ejourneys
(From the Community Caregiving Journal 3-word prompts Dip, Relief, Storm)

I started writing this as a comment to Denise's entry, "Tell Us: Do You Want to Know the Final Departure Time?" Then I realized I couldn't make this short -- or perhaps even coherent.

I think the question presupposes a state of order rather than chaos. Or at least a clearer trajectory than the one I feel I'm facing.

My partner has likely had MS since her hospitalization in 1982 (when MS was ruled out in favor of "probable viral encephalitis"), which makes that 31 years. Since that onset she had received an advanced degree on an NSF grant. If pressed, I could say I started noticing a decline in 1998, which seemed to increase in 2008. Her MRIs, including the one taken just a few days ago, have shown "no significant interval change....no MRI evidence of active demyelination" since last year, indeed since their 2009 baseline.

With most of the damage in her prefrontal cortex, her MS has a very unusual presentation according to her neurologist. Physically her condition seems to have improved, especially with the introduction of Vitamin D (in which she had been deficient). Her aches and pains seem to have decreased.

My partner wants to live as long as her grandmothers had (one had died at age 97, the other at age 99) and her mother, who is now also in her 90s.

She's terrified of dying. Or, as she told me yesterday morning, "I think I might have leukemia." After a bit of discussion she calmed down and realized she was probably overreacting to a red spot on her thigh where she had dug out a tiny splinter.

This is a pattern with her. Years ago she thought she had TB. She doesn't remember that particular panic. As I've reported here, she thought she had cancer in her thumb a year ago. She's told the neuro she thinks she is Marfanoid. And so on.

That's all complicated by the fact that she does have illnesses. Her most severe disorder is primary progressive MS, mixed with mental illness that's been given various "schizo" labels, depending on whom you ask. (Schizo-affective disorder seems the best bet.) Add to that her mitral valve prolapse, scoliosis, and toenail fungus, the worst of it remedied by toenail ablation. In 2009 she had a hysterectomy to remove a mess of fibroids, cysts, and endometriosis. She recently started taking Synthroid for what is likely Hashimoto's thyroiditis.

Her panic hits me like a fast-moving storm. Her fears come on like rain bands, massive and thunderous, and I do my best to tease out what's real and what's not. I can't stop the rain. I might deflect it a bit, going down our checklist (has she had enough to eat? Does she need water? Is the room temperature okay?). I might help manage her fears with the help of the Internet, finding other and more probable causes of whatever she's experiencing.

Relief sets in for a while, a break in the storm clouds stretching into a full, sunny day. Or even several days, before the next storm hits. I've gotten so used to living in the wet that now and then a squall barely registers. My rational world just takes a dip for a bit, and all the madness becomes something of a second home. A rain shelter, if you will.

Sometimes, when we return to calm and laughter, I almost forget how sick she is. Finding her asleep on the floor no longer bothers me. Hearing her talk about going back to work I think, "That's nice," not believing a word of it for a second. But I won't tell her she can't.

Yesterday she was disappointed.

She had asked me to photograph her eyelid, convinced she could prove to me that the doctors had performed lachrymal surgery on her in 1982 to make it easier for her to cry.

KONICA MINOLTA DIGITAL CAMERA

Finally I could see the white dots she was talking about, which she calls her surgical scars.

My guess is they're blocked ducts, as described here. Another possibility is milia, which I think is less likely because I think she has spots rather than bumps.

I pointed this out to my partner.

She said, "I was so sure this would convince you."

In the photo, right next to her fingertip, is a small piece of black duct tape. Every so often her eyelid develops a wart, which she tries to get rid of by placing tape over it. I wouldn't be surprised if that blocks her ducts, too, but she's convinced the tape does her good.

Yesterday, hearing her, I remembered my own disappointment that I could not convert my mother and teachers to the unconventional belief system I'd had as a child (described here). Why couldn't they just believe? Why were they so stubborn, why were they fighting me? Their skepticism had only strengthened my resolve. I remember how that felt. I could see my adolescent self in my partner.

I remember how devastated I felt when that belief system fell away from me. I give my partner room to believe what she needs to believe because I remember what that was like.

I am secretly heartened when I hear her use phrases like, "If that is what happened." She doesn't say "if" often, but those two letters make a very big word, one that allows room for alternative explanations. Even if she's saying what she thinks I want to hear, that is also progress. I know I can't rush her along this path, and I know that it is not a linear path.

Death is an odd concept for me. I dreamt repeatedly when I was a toddler that I was dead. Then a car accident almost killed me when I was seven. For years I believed I was in contact with a "future life" into whom I would be reincarnated. Raised during the tumultuous 60s and 70s, I felt sure I wouldn't survive past my 20s. I was suicidal for a decade growing up (though not to the point of actually making an attempt), before I cultivated my will to live. A major heart attack had almost killed my mother when I was 10; she died when I was 23; at age 54 I am three years younger than she had been when she passed. The year after she died I escaped a violent marriage. A cousin with whom I was very close -- for years the only relative with whom I communicated -- died at age 44 from a drug addiction she had kept secret; I was 44 when my father committed suicide.

The question of do I want to know when I'll die amuses me because a story of mine, published in the 80s, centers around a character who does know, and who had always known.

But she is not me. I have no idea what's in store for me. I have no idea how much longer my partner or I will live. The prognosis given years ago for MS puts my partner on borrowed time, but hers is an unusual form of MS. Back in 1982, in the same month my mother had died, my partner's parents had been summoned across half a continent to her bedside because the doctors hadn't expected her to live.

She's still here, 31 years later. For all I know, she may follow the examples of her mother and grandmothers. I could go first.

I have no idea what the future holds for either of us. I can imagine all sorts of nightmare scenarios that stem as much from safety issues due to my partner's mental instability as from physical disease progression.



She could have died (and, worse yet, killed someone along with her) when she overinflated her truck tires to the point of blowout on the highway.

Then there was the fire hazard issue with her "space heater" coil:



There are the two times her fidgeting had knocked my car shift from Drive into Neutral on the highway while I drove her to medical appointments, which is why she now sits in the back on long drives. In short, I have plenty of material to choose from with respect to death possibilities, or to potential events that would move us into the "living hell" category.

But greater than the possibilities are the uncertainties, and I have no way to catch all the contingencies involved. I need to let all of that go unless and until my radar picks up a storm ahead, a dip in mental barometric pressure, a relief valve that needs to open.

I need to go about my life as best I can, do what I am capable of doing, and let the rest be. For one thing, if I fretted all the time, that energy could whip up a storm all by itself -- for both my partner and for me.

For me, the line between preparation and flexibility is very wiggly. I've spent years making peace with the realization that nothing in life is guaranteed. I've had to learn to stop feeling responsible for things I cannot control, and that's an ongoing lesson.

college-clockdrawing-happyclockstamp-combo

On the left is a drawing I made in college, reflecting the time pressures I felt I was under constantly. Over a decade later (but still years before I met my partner) I carved the stamp on the right as I learned to make my peace with the clock.

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Denise

Hi, Ah, the clock. Sometimes I struggle with past--did I use the time I had wisely? I'm better about catching myself and focusing make the best of time now. \r\n\r\nYou do that, EJ. You are great at now. And, that's a gift. :)

Casandra Porter

For this: \"I need to go about my life as best I can, do what I am capable of doing, and let the rest be. For one thing, if I fretted all the time, that energy could whip up a storm all by itself — for both my partner and for me.\" \r\n\r\nAnd for this: \"I’ve had to learn to stop feeling responsible for things I cannot control, and that’s an ongoing lesson.\"\r\n\r\nI love and appreciate this post. These are lessons I need to learn. At some point, they are lessons we all need to learn. Many times I feel like I am spinning my wheels unable to move forward because I am so worried about those things I have no control over but they have a very serious control over me because of that worry. \r\n\r\nThank you for sharing this!