Saturday, September 18, 2010

"If I had my way I'd make health catching instead of disease."*

First off, I want to thank all of you for your very kind thoughts about my grandmother. She is much improved, and has moved from the hospital to a local (ish) rehab, where she's getting some much needed help with her leg strength and balance. Aside from being a bit more wobbly (which was an issue prior to her fall), there seem to be very few ill lasting effects. Knock wood, throw salt, praise the god/goddess/ancient deity/flying spaghetti monster of your choice. I do really appreciate the support I've received here, and can't tell you how much. We're working through it. Slow and steady.

One of the things I've been spending a good amount of time pondering during the endless hours of "hurry up and wait" or "the doctor/therapist/food will be here any time now" that have accompanied this experience is the shocking clarity of learning just how closely my grandmother's condition and my condition resemble each other. A few of the correlations I've seen just today -
  • Because she has an atrial fibrillation, her heart rate and pulse can drop dramatically, and she's been on multiple blood pressure meds to help control this. For me, that's the POTS, and the drugs she's been on? I've been on the majority of them too.
  • She has weakness and swelling in her legs, and they're not really sure why. Ditto here.
  • She has freezing cold feet - sometimes requiring three or four pairs of socks. I also have this problem (although it's not as constant as hers, and is complicated by the burning on the bottom of my feet sensation I get too), and most days, if you put your hand on my upper thigh and slowly move it down, you can feel about a 10 degree temperature drop by the time you get to my icy cold toes.
  • She has an unexplained (but attributed to her heart condition) dizziness and vertigo; I have an unexplained (but attributed to my POTS) dizziness and vertigo.
  • Neither one of us can stand, unaided, and straight. We invariably begin to tip after just a few seconds.
  • She's passed out more than once - her history of fainting spells stretches back to when she was a teenager. Want to take a guess when mine started?
  • She's weak and she's tired a lot, and they like to say things like "Well, you're ninety three, what do you expect?" when she complains about it. I'm tired a lot, and unreasonably weak, and they like to say things like "Well, you've got chronic health conditions, what do you expect?"
  • We've both learned to sit at the edge of the bed, feet dangling for a minute, before we dare to get up. (And by 'learned', I mean to say we both remember it when we feel like it, and sometimes screw the consequences when we don't.)
  • We both have extremely sensitive skin - her back has been as hot as coals ever since she was admitted to the ER, due to some combination of hospital/rehab soap and laundry detergent. They gave her some medicine to put on it, which I've been helping her with, but the rash I got on my hands spread like fire all the way up one of my arms, so I had to start using gloves to put it on.
  • Neither one of us likes to be in the position of asking for help, and get frustrated by people telling us what/how we should be doing things. (Oh wait: this is unrelated to our medical conditions unless "stubborn as a jack ass" is now listed as a medical condition.)
  • Same goes for physical therapy and occupational therapy. (See above point, re: jackassery.)

Our medical conditions are in some ways eerily similar, even though I know they are not the same: I have had about a million heart tests, and by now, for sure, they would have found the murmur or the blockage or the tiny little atrial valve that plague my grandmother. It's not what's wrong with me - I've got a million things that she never had: extra sensitive sense of smell and hearing, allergies to every natural and man made substance ever, hyper reflexes, muscle wasting/weakness, chronic infections and low immune system support; Most importantly? Pain, pain, pain, pain, pain. I'm so glad that she doesn't suffer from pain that I could cry, but, since it's my most debilitating symptom, I can't pretend that it's not the biggest difference in our situations.

So I can see the differences, and the parallels, and I have to wonder: how much of this is in my genes? How much of this - whatever this turns out to be - is in everybody's genes, just sitting there, only coming out when something goes wrong? Because I can also see the similarities between me and my mum (who's got ulcerative colitis), or my sister with depression, or my other sister who developed random allergic hives for 8 months that disappeared as suddenly as they came. So how much of what's wrong with me is laying dormant (or not-dormant, as the case may be) in the people I love? And how much of it is floating around in everybody's genetic code?

It's a scary thought: Both the "why did I wind up being the lucky one" part, and the "Holy shit, what is wrong with us???" part.

The main difference between us is that my grandmother's condition - aside from her extremely sensitive skin & occasional fainting spells - waited till she was in her eighties to attack. She had a full 'before' life - with 9 kids and a husband, and the mother in law from hell, and being a nurse during WWII, and helping to raise her granddaughter when her son died, and a million other things that happened before she started to become unwell. For me, my life before - the lesser (percentage wise) portion of my life, at this point - ended at 15. Before I had the chance to do so many of the things I wanted to do, and consisted mostly of being a child, a dancer, a reader, a babysitter/big sister.

But here's where I go back to our similarities, because my grandmother - then in her eighties and now in her nineties - dealt with it. All of the inconveniences and indignities of being ill and having to figure out how to live your life the best way you know how. And - while I may not always succeed as well as she does - I'm certainly going to do my best to make that our most striking similarity: the fact that giving up ain't really an option. That we are not the illnesses we've been battling, or whatever disabilities we may have, but only ourselves.

And that the weaknesses we've got in common don't matter near as much as the strengths we share.

*Robert Ingersoll

1 comment:

Crazed Nitwit said...

Oh my gosh, I'm in tears. I SUCK as a friend. I'm sorry. I can empathize with so much of this just by the fact as I age my body keeps betraying in small but telling ways. I can, however, get up and off my huge age and walk. I have been walking. I have been eating well. I had to buy new underwear as I'm shrinking. My breasts are disgusting. Aging is a continuing lesson in humility.

So many things I have no control over. I do have control over what I eat and I do for stress and pain relief~exercise(I cannot believe I just wrote that).

Love, love and more love.

Janice the self centered