Monday, June 27, 2016

The Perspective of Hope

I know a woman whose fourteen-year-old son is dying of cancer. He was diagnosed at age eleven and has fought an insane battle, but isn't winning the final round. Of course it goes without saying that the impact on the entire family has been utterly devastating. His mother is a gifted writer who provides incredible insight into the reality of their nightmare, and she recently wrote a post that utterly moved me. It was about the changing stages of hope. Four of them, to be precise, coinciding with the advancement of her son's cancer. It started with the natural hope that a person so young would beat the disease and sail into adulthood to live a full and rewarding life. But by the time she reached the fourth stage, it was all about hope for courage. More precisely, the courage to watch her child die.

Needless to say I was incredibly humbled. And ashamed. See the last six months have been living hell for me. I got really sick again and had to quit my job. I didn't realize how sick I actually was, however, until I quit that job and tried to resume my normal housewifely duties. That's when I fell flat on my face. I went through my own grieving process, which mostly consisted of anger and hating myself for being so sick it totally screwed up my life. When I was at my worst I even prayed for my own death, and raged at God for sparing my life when I had those two strokes six years ago. It would have been such a natural way to go, and would have saved me years of suffering...

I bet my friend's son would rather live every day of his life as a double-stroke, four-pancreas-attack, CFS/ME, and fibromyalgia survivor than die in his early teens of cancer. While I don't subscribe to the belief that someone else's problems invalidate mine, reading his mom's post was an incredible dose of perspective. I've been given the gift of life. A sick life, a life with a lot of concessions and heartache and sacrifices and surprises. A misunderstood life outsiders judge very harshly. And a life that really flippin' hurts. But the thing about life is it's not final. It's fluid and can change. If observing this family's experience has taught me anything, it's what a fool I was to wish away my life. For no matter what depths of despair I may sink to, there are probably quite a few people out there who would gladly take my living hell.

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Tuesday, June 21, 2016

The Luxury of Sick

I've spent the last two week laying around doing nothing. I shouldn't consider it nothing, considering I'm desperately trying to rebuild my health. But instead of saying, "I've spent the last two weeks laying around healing," I fault myself for such a monumental lack of productivity. I feel guilty for not doing the laundry or putting on makeup or going to the grocery store-- things a normal woman my age should do as an afterthought in her thriving, busy life. Yet when I do venture into the land of normal, those simple activities comprise my entire day and usurp all my energy. As I watch my muscles turn to mush and tummy fat muffin-top over my jeans, I wonder if I'll ever be able to return to the gym. And for the love of all things holy, I pray I'll someday gain enough confidence to even glance at the book I bothered to write, let alone try and sell it.

Rebuilding from the splatter of hitting bottom is hard. It wasn't until I accepted, again, that this illness is in control right now, and stopped flipping out about how bad it sucks, that I was even able to stop my decline. It's a daily battle, to be kind to myself, to forgive myself for being sick, to accept the limitations placed on my life. And to remember I've been far worse off before, and it's gonna take some time to improve, but I will eventually get my fibromyalgia managed again. I just don't know when.

Patience is a wicked virtue. Not one I was given in my basket of traits, via either nature or nurture. I'm a driven, competitive, type-A, bossy achiever. When life pushes me, I push back harder. But this does not work with fibromyalgia. I can't "mind over matter" or "action breeds progress" my way out of this one, and Lord knows I've tried! I do know of people who have managed to find peace and happiness while so sick they can barely function. I, my friends, am not one of them. I've tried to be. At times I have been. Right now I'm actually succeeding. But once the pain lifts, and the simple act of showering doesn't wipe me out for three hours, or I wake up with a speck of hope or optimism in my heart, I start racing to the finish line. Well not this time. I'm working hard for every ounce of health I can find, and unwilling to give it away because I want more. No, this time I'm building myself up slowly, gently, generously. I'm respecting where I am, where I've been, and where I want to go. And resting firm in the knowledge that I only begin to heal after I give myself the luxury of being sick.

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Friday, June 10, 2016

Do Cocoons Hurt?

I always assumed the process of turning from a caterpillar into a butterfly wasn't a painful one. Sure, it seemed like a lot of work to spin that silken cocoon to wrap up in, and getting out seemed a bit tricky, but I never gave much thought to what actually happens inside there. I guess I thought it was a womb-like transformation-- where awareness doesn't exist and growth just happens. Turns out I was wrong. Inside the chrysalis the caterpillar digests itself by releasing enzymes to dissolve its own tissues. Then a group of surviving cells rearrange into a butterfly. Ouch. As a person whose own pancreas has tried to digest itself four times (pancreatitis), I only pray some opiates are mixed in with those enzymes to dull the poor caterpillar's agony.

Right now I'm picking myself up from my biggest fall in five years. It's been three months since I last blogged. In that amount of time I've been to hell and am hopefully halfway back again. Again. But every time I break there's a little bit less of me to put back together. My fissures are more obvious, missing pieces more pronounced. And the fresh memory of pain and anguish scathed so deeply into my psyche, I wonder how I was ever able to soothe the raw wounds in the past.

Half my battle was swallowing the bitter pill of acceptance. It took me months to realize I worked too long, my immune system got hit too hard, and I was diving into the unlivable hell of viral CFS/ME again. Too sick to exercise, but still chugging my veggie juice, I finally had to accept that holistic may keep my health from spiraling out, but once my ship has sunk it's not enough to tow me to shore. For that I need a doctor.

After a change in sleep meds and an increase in my anti-viral dose, I can see a fuzzy light at the end of the tunnel. But the woman peering out from inside the cocoon isn't the same woman who went in. And I don't know if I ever will be again. The darkness that filled the void of my soul isn't entirely gone. It almost seems to be a necessary part of me now. A part I want to hang on to. Reminding me of how much it hurts, how bad it can get, and if I am ever lucky enough to stabilize my health ever again, how very much I stand to lose.

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