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Random feet-related psychological bits
(from comments elsewhere)
1. I find I am already inventing hope for myself. I could have what he says I have and I could go into totally spontaneous miraculous remission. I could have what he says I have and medical science could learn what to do with it. I could have something different from what he says I have. On some level I realize this is illogical; what's the name of that river in Egypt? On another level I realize it is essential. Reality-based? Me? Not when I can't afford to be.
2. I deeply value being an independent, self-sufficient person. Nobody tells you, when you get a diagnosis like this, that the hardest part isn't learning how to make all the endless frustrating/painful/expensive/inefficient accommodations in your daily life; the hardest part may not even be giving up about seventy percent of the activities you once loved; the hardest part is convincing yourself that your core values are no longer sustainable and must be jettisoned.
I'm realizing now how unutterably spoiled I have been, to be able to have "being an independent, self-sufficient person" as a deeply-held value. (Perhaps the same could be said of having "not being in denial" as a strong value.) Really, mind-bogglingly spoiled.*
Obviously I'm still working through this in a psychological sense. Perhaps my record of this process can eventually help someone else who is in a similar situation some day. Plus it helps vent my spleen, which is worth a lot.
3. I called my sister the other day, for her birthday. It was a couple hours after my diagnosis. She asked how my feet were and I just said same-same and dropped it. I mean, it was HER birthday, not CJ's whinefestday! But now I feel like I'm hiding something. Maybe I'll send a family e-mail this weekend.
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* Can you imagine? I used to whine about curable things.
1. I find I am already inventing hope for myself. I could have what he says I have and I could go into totally spontaneous miraculous remission. I could have what he says I have and medical science could learn what to do with it. I could have something different from what he says I have. On some level I realize this is illogical; what's the name of that river in Egypt? On another level I realize it is essential. Reality-based? Me? Not when I can't afford to be.
2. I deeply value being an independent, self-sufficient person. Nobody tells you, when you get a diagnosis like this, that the hardest part isn't learning how to make all the endless frustrating/painful/expensive/inefficient accommodations in your daily life; the hardest part may not even be giving up about seventy percent of the activities you once loved; the hardest part is convincing yourself that your core values are no longer sustainable and must be jettisoned.
I'm realizing now how unutterably spoiled I have been, to be able to have "being an independent, self-sufficient person" as a deeply-held value. (Perhaps the same could be said of having "not being in denial" as a strong value.) Really, mind-bogglingly spoiled.*
Obviously I'm still working through this in a psychological sense. Perhaps my record of this process can eventually help someone else who is in a similar situation some day. Plus it helps vent my spleen, which is worth a lot.
3. I called my sister the other day, for her birthday. It was a couple hours after my diagnosis. She asked how my feet were and I just said same-same and dropped it. I mean, it was HER birthday, not CJ's whinefestday! But now I feel like I'm hiding something. Maybe I'll send a family e-mail this weekend.
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* Can you imagine? I used to whine about curable things.
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*To say that you're ever done going through this process is misleading. But there's an acute period at the beginning when your perceptions and expectations are forced to shift that is different than the ongoing reminders and adjustments.
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In a way I'm a little bit lucky: I dealt with building a lot of my compensation behaviors back when I thought I'd be over this in a little while. I didn't have to do that AND deal with the word "incurable" all at once. A piece at a time might well be easier.
To say that you're ever done going through this process is misleading. But there's an acute period at the beginning...
*nodnod* That makes a lot of sense. It really is like mourning, isn't it? Very like. (Of course, part of this IS very real mourning.)
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I was very athletic as a kid, teen, and young adult. I had my first knee reconstruction at 16. They fixed my ACL and some torn cartilege. About 20 months later, I shattered the kneecap in the same knee. My doctor, who was Florida State's orthopedic surgeon, said it was a "one in a million" accident. My kneecap split into three big pieces and a bunch of little slivers. They couldn't fix it arthroscopically, so they had to cut my knee open. I've got two screws holding the three big pieces of the kneecap together. The slivers were all removed and so most of the cartilege. The doctor told me at the time that if I'd been 25 instead of 18, he'd have done a knee replacement, but he couldn't do that to an 18 year old. He told me I'd probably have to have it replaced by the time I'm 40. I just turned 35. I was fine for about 4 years after the surgery. But the knee started degrading. I dislocated it a couple of times. The whole system was weakened so much by the injuries and surgeries that I'm prone to that now. I had to give up sports entirely. Over the last ten years, I've had to give up more and more things. I've got arthritis in both knees. There's kind of a constant background pain that I've almost grown used to. I still think of myself as the fit, healthy, guy I was most of my life. It's only when I see myself in the mirror that I'm reminded that I'm not that guy anymore. I have trouble sometimes with stairs and steps. I sometimes have to rely on other people to do things for me. I also have asthma. I got that diagnosis about five years ago. Between the knee and the asthma, the hope of ever having an active lifestyle again is pretty much out the window. As my knee continues to degrade, I'm starting to think really seriously about the possibility that I've got a painful joint replacement surgery and rehab on the horizon.
Not that I meant to turn this into a pity party for me.
A have a friend who has had fibromyalgia for about seven or eight years. Within about ten minutes of reading your post, she also posted something similar. She doesn't talk about her illness a lot, but I was struck by some of the similarities in what the two of you were writing, especially about being spoiled. She gave me permission to share that with you if you're interested in seeing it.
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Denial has gotten a bad rap. It wouldn't have become such a popular pastime in the first place if it wasn't an effective survival skill in some circumstances.
(((hugs))))
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Hope is not for sissies...
But I think an adjunct of hope must be a questing spirit. I'm ever on the lookout for ways to help my various physical challenges, and while I know that you've tried just about everything coming down the pike for your feet, part of accepting a diagnosis like yours is not allowing yourself to give up, nor imagine that there will be no way to help you in the future. I'm reminded of the story of Lorenzo's Oil, where parents researched as much as they could and ended up inventing an alternative treatment that actually worked and gave help to other children afflicted by their son's malady.
I'm not telling you anything you don't already know, and what
And you're right that the hardest part is realizing and accepting the fact that your life will never be the same as it was. Jettisoning core values like being independent and proactive in sports such as running is not easy. It's heart-breaking. But, there are alternatives which may not give you the same pleasure and satisfaction, but are do-able. As someone who has spent far too much time on grieving for the lost parts of my life, I can tell you that finding the new parts is not just a revelation, but entirely necessary to creating a new life that is satisfactory.
The fact that you're going through this part of dealing with the diagnosis and writing down your insights is a positive thing. You will go through all the different facets of grief, because grief is what we're talking about here--you've had a loss...many small losses caused by one physical problem. It was wise and kind of you to not burden your sister on her birthday. Whinefests are part of the process though, and now and then actually help cleanse you of stress. Then again, I am reminded of a joke my grandmother would tell of the man who raised his hands to the heavens and cried, "Why ME, God?" and the voice came down saying, "Why not?"
You're in my thoughts and prayers, sweet lady. Gentle hugs!
Re: Hope is not for sissies...
Yet the salient point is that I have not reached acceptance. Acceptance might be the saner and more efficient goal, but right now I will cling to my hope.
I agree with you that finding the new good bits is a challenge I will absolutely, definitely have to meet. Another challenge is not being snarky to people who are still spoiled and pampered and blind and stupid about it (and lauded by our culture for all of that); justified or not, that's not the kind of person I want to be, enormously tempting though it is right at this moment. I'll learn to find the good bits and I'll learn to treat smug others with decency. It may take a while but I will learn.
Grief is a good way to put it. I'm mourning a death: ME. Now I reinvent the future person who will inhabit this significantly different body and carry my name.
Thanks for the compliment about the phone call with my sister. I felt funny about it, but I also felt it was right. Thanks!
the voice came down saying, "Why not?"
HAHAHAHAHA! That's awful! ...and so true.
Thanks, and hugsback!
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Rather than jettisoning values, I see it as having to change your entire perception of who you are. It's just another way of saying the same thing. Someone says a few words and suddenly you realize you're a completely different person -- a person for whom running and and square dancing are out of the question.
You've suffered a loss, and you have to go through the grieving process. Someone you love very much has died, and you feel lost. The CJ who ran and square danced is gone, and instead you're in this strange new uncooperative body.
Allow yourself to grieve. Cry when you're frustrated and sad. Pound the table or grab a throw pillow and beat up the sofa and yell "IT'S NOT FAIR, DAMMIT" when you're angry. Above all, be good to yourself.
And don't think it's pure denial to hope. If you had told me when just hobbling to the mailbox with my cane left me in exhausted pain that in 15 years I'd walk six miles, I'd have laughed bitterly at you. But I gradually found things that helped -- the right meds, acupuncture, graduated exercise, learning to pace myself, eating better, drinking more water, losing weight, taking glucosamine, developing my love of nature ... no one thing made a big difference, but each one made me just a little bit better, and added all together there has been a huge improvement.
There may not be a dramatic fix for you either, but there may be a lot of little things that will help. And maybe there will be a breakthrough that will bring the old CJ back. It's not foolish to hope that a cure will be found, as long as you're able to accept at the same time that it might not.
I'll send you good energy, and light a candle for you next Sunday.
=BIG WARM GENTLE HUGS=
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secondly: good for you for getting this stuff out. i dunno about you, but i find that getting things out helps me keep perspective, and keeps it from becoming all-consuming.
not sure i can add much more, other than to strongly agree that what you're going through is very much a mourning process, one that you'll have to work through in your own time and in your own way.