Tag Archives: chronic illness

Two Worlds

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Public and private. All of us behave a little or a lot differently whether we’re in public or not. In extreme cases, people live “double lives”.

The dichotomy between Lynn’s public life, by which I mean when friends and family visit, and private one, where I’m the only person around, is so glaring that it got me thinking.

Specifically, I’ve been pondering why she’s not just okay when friends and family are around, but especially smiley (and today, extremely giggly) and physically better than normal. There’s a wonderful lightness. I guess it makes sense learning what we’re learning about the importance of close interpersonal relationships to our overall health and well-being.

But man, the whiplash that comes when friends and family leave is intense. And disorienting.

When home alone she pops boosters between timed meds and her body is off and on, and when on, she’s bored, and she struggles with any sense of purpose. There’s a heaviness.

Why am I telling you this? Not sure. Maybe to help you mentally prep for this phenomenon if you’re ever a primary care giver. Or maybe I’m letting you in hoping for some sort of connection.

Last night, I had an epiphany. A tough one that I was hesitant to share with Lynn because I expected a negative/defensive reaction.

I told her I had an observation I wanted to share with her. “You have a restless spirit.” There, I said it. Fortunately, I was wrong, because she didn’t argue the point. She listened carefully as I told her I missed her, that it felt like all of her time and attention was taken fighting her Multiple Systems Atrophy. That there was no time or attention left for me.

That I felt more like an employee than best friend.

Most people confined to a wheelchair and unable to do hardly anything independently watch a lot of tv and read. Since Schitt’s Creek ended, Lynn doesn’t watch tv and her reading glasses, despite repeated trips to the optometrist, aren’t working well enough for her to read much.

Thus, when alone, if she’s feeling okay, she’s in constant motion searching for something to do. Anything to do. Or she’s laid out on the couch waiting for her meds to kick in. The only time she’s not on the move is when her body completely quits or she’s asleep.

Our convo, mostly about how dying is scary and spiritual malaise, deepened. She cried and said she didn’t know “I loved her that much”. I took in what I think was her deeper message, “I didn’t know I’m that lovable.” I told her lots and lots of people love her.

I told her I was having a hard time dealing with her restlessness and with her constant MSA fight. That caring for her took all my energy, that there was no leftover energy to just hang. And that it would be really sad to spend our final months or years together not really together.

Case in point. Saturday and Sunday nights I throw dinner together for the fam and then sit at the kitchen island with my own dinner while one or both daughters join their mom at the dining room table. Hell, during the week I do it too, leaving Lynn to eat by herself. Yeah, you’re right, I am a lowlife.

While I am a lowlife, I probably deserve a few points for being vulnerable and risking the convo. Sadly, in part, I risked it because soon we won’t be able to have back-and-forth conversations of that sort.

But not being especially centered myself these days, it’s really tough to take on her anxiety about dying, her exasperation at MSA’s relentless progression, and her general unease and utter restlessness. Especially given the cost that restlessness is taking on our friendship. For now.

Postscript: We ate dinner together. Afterwards, there was more slow dancing in the kitchen. The roller coaster keeps rolling.

Trying To Keep It Real

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Newish ritual. When Abigail comes at 8p during the week, I take advantage of the evening light and walk towards the co-op and then down the Garfield Nature Trail, popping out on West Bay and up West Bay back to basecamp. A serene 2k. All while whittling down the podcast queue. Since starting this ritual my sleep score has risen a bit. Cowinkydink?

The last “evening walk” pod was an interview with a male family therapist who explained men don’t learn to be vulnerable. Dude, not an original insight, but one that trigged one in me. While listening to him it dawned on me that The Good Wife wasn’t being vulnerable with me about her worsening condition and finite time. At all. And that, as a result, I wasn’t feeling very connected to her. Just the guy who helps her in and out of bed and the wheelchair. The bloke who cooks, cleans, and keeps her calendar.

And so I told her that, and said, “What gives?” And she deflected, saying I wasn’t being vulnerable, which was humorous because I had just defied my gender and communicated a heartfelt feeling. And I told her that too. And she was silent for awhile. And then.

She talked about my first marathon back-in-the-day which went by our street at mile 21 and how I had dropped out and didn’t even make it to there. And how I felt so bad for failing A and J. That it was a perfect opportunity to model toughness and I blew it. And how my beating myself up stuck with her. And she said I always praised her for any toughness she showed. And that if she’s tough now maybe she’ll slow down the disease’s inevitable progression.

Ah shit. Any chance of rewinding the tape? Of a do-over?

I told her I didn’t think toughness would slow down the atrophy, but that it most certainly would make it more difficult for us to connect.

Then she went deeper. Talked about being afraid of dying. About questioning lifelong religious assumptions. About specific anxieties tied to what will happen to her body upon dying.

Which allowed me to return to the old familiar fold of closest confidant and best friend.

I thanked her for her honesty and encouraged her to think about dying as a natural process that happens to her beloved plants, animals, all aspects of nature. To think of it as falling asleep, but not having to wake up.

I said it would be unbearably sad alone, but that she’ll be surrounded by people who love her dearly. People who are much better off having known her.

Right now, I’m the oldest and wisest I’ve ever been, so I don’t expect any of those words to ameliorate her end-of-life anxieties and fears.

But maybe, hopefully, a little.

My No Good, Horrible, Very Bad Year, So Far

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“It’s not how many times you get knocked down,” Stuart Smalley, Socrates or some spandex shorts wearing high school football coach once said, “it’s how many you get back up.” I’m not sure who to credit with this well intentioned quote because 2014 has not just knocked me down, it has damn near knocked me out.

To fully appreciate my wretched present, we have to rewind to October when I tore a calf muscle while doing too many hill repeats in prep for the Seattle Half Marathon which I ended up missing. Even writing “half marathon” makes me laugh now. I took four weeks off and then returned slow and easy. On the fourth recovery run the calf again rioted. So now I’m not even half way through an eight week hiatus. The other day I started corralling wayward Christmas tree needles when I had to turn the vacuum off and sit down and rest before continuing. All this, eighteen months removed from long distance triathlon success. We are always the last to know when we’ve peaked.

Add into the mix an enlarged prostate which means sucky sleep, contacts that are shot meaning sucky vision, and an unplanned trip to Dante’s Inferno compliments of an influenza roundhouse that left me too sick at times to watch television. Somewhere along the long downward spiral, I went from thinking “I should probably try to get back up and do Stuart Smalley or Socrates proud,” to “Screw it, I’m just gonna curl up in the fetal position and stay down. If I tuck tight enough it may not matter if 2014 continues kicking me in the gut.”

A part of staying down was going to the dermatologist who always smiles when she sees me. You’re thinking she’s probably turned on by me, but I looked liked I just returned from the lower levels of Hades. She always smiles at me because my tired skin pays for her boat. She has zero interpersonal skills, but she’s damn good with a liquid nitrogen canister. It was as if 2014 asked her to liquid nitrogen me until I begged for mercy. So now, a few days later, red blotches are forming all over my formally handsome self. And I haven’t shaved for ever, I need a hair cut, and if my sinuses weren’t completely blocked I’d probably lay on the floor of the shower for awhile.

Like a paratrooper who perfects her aerodynamic tuck, I thought if I just give in to my cosmic fate, I’ll hit bottom faster and bounce higher when I do. So why not roll the dice with one of the things I most cherish, my marriage.

“You know when I asked if you’d get me some 7-Up or Sprite?” “Yeah.” “Well, the funny thing about that is that’s what my mom always gave me to drink when I was sick as a kid. It’s funny, there’s something about a near-death experience that makes a part of me still want my mom. That’s probably the least masculine thing I’ve ever said, huh?” “A mother’s love is primal.” Say wha?! The first sign yet the calendar may not have it out for me.

And then I visited Australia, well actually an Australian blog after the author visited here. And I read this:

People often ask me what it’s like living with a chronic illness. And by ‘often’, of course I mean never.

So, for the benefit of absolutely no one, allow me to explain. You know that feeling you get when you start to come down with something? Your throat starts to hurt and your glands swell up. Your sinuses block and your nose starts to run. Your head hurts and you can’t think clearly. Your bones ache, your body feels weak and no amount of sleep seems to make a difference.

Well, to the best of my admittedly limited scientific knowledge. . . these are actually the body’s natural defences for fighting off infection. It’s your immune system switching on and kicking in to gear.

And these are the symptoms I’ve had 24/7 for the last seven-and-a-half years. Because, as I’ve explained before, my body has been fighting off an infection it can’t beat and my immune system remains permanently in the ‘on’ position.

The good news is that it means I rarely get whatever bug it is that’s going round. Happy days. The bad news is that I permanently feel like I have the flu. Not so good.

Of course, there are other symptoms, too, like sensitivity to light, noise, cold and heat, significant memory impairment, insomnia, chronic pain and various bodily dysfunctions not appropriate to discuss in this type of public forum. And that’s without the introduction of any number of medical treatments — and believe me, I’ve tried a few — which inevitably make you feel worse than you did to begin with.

So, in short, living with a chronic illness is a real party and that’s your answer.

The first gift of 2014. Perspective.

I am fortunate that the relentless attack on my body is abating and that most of my many ailments are fixable. I will ask the lifeguard to roll my pathetic, coiled bod across the deck and into the pool in a day or two. I will try to ascend the trainer tonight and soft pedal while watching college basketball. The torn fibers in my calf muscle will eventually reattach. I will start running in mid February and should be back to semi-normal in June. Meds make the prostrate manageable. I will make an appointment with the optometrist. My ugly sores will heal. I will shave my face and head. Then I will shower, put on clean clothes, and resume my rightful place among the mostly living. And that is the best I can do.