I've been feeling better since Wednesday. Stronger. More able to handle the pain, and even to push myself and feel my muscles burn with exertion. It's been a while since I dared to do anything like that. It would have sent me straight to bed in spasms of muscle agony and the groaning torment of severe "fibro flu". Who wants that? Not I.

I did a lot (to me) of packing and moving this weekend. I picked up boxes and carried them out to my car and into the new house. I scrubbed shelves and mopped floors. I wiped down bathtubs and swept the whole house. I hung shower curtains and ate sushi cross-legged on the bare tile floor.

It was a good weekend. I enjoyed feeling stronger than I have in... who can remember how long? When your days are filled with pain and sickness, they tend to blur together. You forget the last time you had a good day, unless it was extraordinarily memorable. I remember my wedding day, but that was not a good day, health wise. It was actually a very bad day, but I enjoyed it nonetheless.

So that makes me think that the acupuncture is actually, finally helping. I feel like I've been gradually slipping down a flight of stairs, and each step is a lower level of functioning than the last. But, at last, I feel like I've taken a step back up that flight of stairs.

Granted, the fatigue was a bit of a bitch today, but I fought it. I did good, but today, combined with the weekend, may have been a bit much. I think I got over-excited about feeling better, 'cause now I'm feeling pretty gross. Not much in the way of pain today, actually. Surprisingly. I don't really know what to do with myself when I'm not actively in the throes of affliction, so I was at a bit of a loss...

While I was waiting in the bank to change my name last week, I picked up a National Parks magazine and read an interesting article about a woman and her husband who started as seasonal Park workers in Glacier. The article was about how they worked Denali for a season or two as seasonal employees, but then they chose to stay there year-round, and how that experience has changed them for the better. It was a good, interesting story. I'd like to see if I can find it online somewhere... Oh! Found it!

Here. Read this. It's great.

Anyway, it really struck a chord with me, as ever since I started really talking to D I've had this intense desire to visit Alaska... maybe even stay for a while. I can't now, 'cause of the dumb fibro (cold affects me very, very negatively in that regard)... and that is what got me thinking, and grieving.

I'm grieving for the Life That Could Have Been.

If I were not sick, what kind of life would I have led?

Realistically, my health has been compromised almost my whole life. I've had fibromyalgia since I was 9, at least, and the fatigue and other things that accompany it really impacted me growing up. I never had much physical stamina, not to mention the exercise induced asthma that I inherited from my biological dad. (Thanks, T!) Maybe I had the thyroid and adrenal issues way back then, too. I don't know. All I know is that the older I've gotten, the sicker I've gotten.

But if I were healthy, what kind of life would I have chosen?

I used to love to roam the desert and go hiking as a kid. On Sabbath afternoons I'd be over at the D's house, and after lunch we'd decide to go for a hike in the desert. I'd borrow some of their son's clothes and shoes, and we'd be off on an adventure. J and I would leave the adults behind and skip up the mountains like little goats-- he was always ahead of me, because of the stamina/asthma thing, but I trucked right along. When I lived in ID, I had a fierce longing to work for the Forest Service, and I was SO jealous when K got the opportunity.

If I had not been sick, that is the kind of life I would have chosen for myself. I would have joined up with the Forest Service, or the National Parks, clearing trails or patrolling the backwoods or whatever was necessary. I'd cross-country ski through the woods in winter, and I'd hike the Grand Canyon from rim to rim. I'd camp out at Denali, and I'd hike McKinley at least once. I'd sleep under the stars at the Arches, and I'd walk the Appalachian Trail, a pack on my back and a dog at my side.

Would I have a husband by my side as well? I don't know. I do know that, were I living the life that my soul dreams of, I would have married someone very different from C, someone more like B or D, or even W, my sister's fiance.

But the thing is... I was born into this broken body, a body that limits me in so many ways... and I will never get to live that life. I had a taste of it, a beautiful, refreshing taste when I lived up north. But now... now I celebrate walking around the block. My body does not do the things that I desperately, sincerely wish that it would and could. And I must accept the fact that it may never do those things. Truly, it will never do all the things that I wish it could, and that's okay. I know that I am more "frail" than some of the rugged individuals out there (I'm looking at you, Miss R, and your man J!), but I still want to work up to doing what I can.

I want to go backpacking again. I want to go camping again.

I want to do those things without fear of falling wretchedly, desperately ill as a consequence of enjoying myself, of pushing myself. It's ironic that physical exertion can make me so, so sick... because getting exercise is supposed to be so super healthy for you! I feel like a leper sometimes. A misunderstood leper.

And so I grieve. I grieve the Life That Could Have Been, the life that would have been, had I been born into a healthy body.

Anyone reading this with a body that follows your commands and obeys your wishes without committing mutiny... I hope that you walk away from this grateful. I mean it. How often do we think about the little things that our body does for us, without even thinking? Washing the dishes. Bending down to pick toys up off of the floor. Rising from a seated position. Chewing food.

These are things that, some days, are difficult or nigh impossible for me to do. Some of my chronic illness friends find these things absolutely impossible on a regular basis. I'm better off than a lot of them, and it's humbling.

If you have health, don't take it for granted. I certainly don't, not anymore. And yes, while I am grieving, I am also celebrating. I am celebrating the health that I have, whether I feel awful or not. I have safe food to eat, I have medicines to take, I have health treatments that are paid for and not putting me in the poor house or driving me to extreme measures to pay for. I have a supportive network of friends and family that both believe me and believe in me. I have a wonderful husband who takes care of me in a zillion little ways, and who wanted to marry me despite the trip down the stairs I've been taking. He has wanted to marry me for years and years... and his love did not dim a whit while I was off doing what I thought was best for both of us. How many people can say that?

Sure, it's rocky. Sure, I'm in pain. Sure, I'm fighting hard against a body that is literally trying to attack and kill itself. But man... I have so much to celebrate, so much to be incredibly grateful for. And it's those tough things that make me appreciate the nice things so. much. For example... I have a new house! And I was able to clean it!! All by myself!!!

I love my life. So while I do grieve the Life That Could Have Been, I don't know if I could or would ever give up the Life That Is. It's just too rich and too wonderful, and I love all the pieces of it... even the hard ones.

2 thoughts:

  • Optimistic Existentialist | April 23, 2013 at 4:40 AM

    I think this is the most common rumination of human beings...grieving the life that could have been. The thing is though, our "could have been" life could just as easily be a worse "could have been"...we could have been born in a war-torn country where we had no freedoms, we could have been born deaf&blind, etc. So interesting to think of all the "could have beens"

  • Invictus | April 23, 2013 at 9:36 AM

    Yes, I've thought about those, too. (You did say "common" after all, didn't you? ^_^) That's part of what makes me so grateful for the life that I DO have. It's beautiful, and I'm totally free to make the choices that I want. Many, if not most, of the people in the world cannot make such a claim, and that saddens me.

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