In a lifetime of health problems, in a never ending series of doors and hallways leading from doctor to nurse to needles to emergency rooms, with a regular flow of bottles of pills and colored liquids until the most scientific and necessary of medicines takes on a hue of snake oil, the search for health is become like a search for the Holy Grail. I have begun to ask myself, have I made an idol of it, this thing that almost everyone else possesses without a second thought? “Next I will find that I must requisition the sun in triplicate and have three doctors countersign a prescription for water!” runs the thought, tired and somewhere between bitter and amused. Normal is a unicorn ever pursued and always out of reach. Health is a magic cure to be found just beyond the next dragon slain. If I could just find Lazarus, maybe he would show me the way. Or perhaps he’d point an admonishing finger and tell me to go back home, I’m doing it all wrong. Again.
I’ve recently received yet another diagnosis, and this one might be the most frustrating of the lot.
I have insomnia. Chronic, severe, insomnia. When I fall asleep, I don’t stay asleep. I wake up over and over and over, so many times, that my sleep study looks bad next to my dear Kara, the narcoleptic. I don’t get deep, restorative sleep. And in all likelihood, I haven’t had a real night of honest sleep in my adult life. My father posits that it might be longer than that. Not that it matters. What matters is, I don’t sleep well. I haven’t had a good night’s sleep in years. In fact I realized, I don’t even know what that means. I don’t remember ever waking up and not feeling tired. I don’t know what it feels like to be well rested. I have no basis of comparison by which to understand that phrase. It’s like finding out that I’ve been color blind all my life. Exhausted is my natural state of existence.
It would be one thing if this experience of the abnormal being normal was limited to poor sleep, but it isn’t. In area after area of my life, I keep finding out that my experiences of health and the functioning of my body are not normal.
Last month, for the first time ever, I walked up a hill and did not see red. I did not feel winded. I had no shakiness or weakness in my limbs. Thank God for my heart ablation last year, because this looks to be the one area of my life where something was actually fixable, and not just “manageable.” I did not know, until that day in my 36th year, that other people do not, upon reaching the top of a small hill, shake and see red at the edge of their vision. I did not know, until it was gone, that I had been battling a heart problem since I was a small child. When I realized what had happened, or rather, what had not happened, and why, I cried.
I cried because I didn’t know that this was a problem that needed to be fixed, much less that it could be fixed. I cried because all my life I thought that I was just weak, and I didn’t understand how other people were able to push through that shakiness, and ignore their limitations. Turns out, they didn’t have them to begin with. All my life I have heard, and believed, and berated myself, that I’m not trying hard enough, I am lazy, I am weak, I am doing it wrong, I am whining, blah blah blah blah blah. And not just when it comes to running and sports, but in many areas of my life.
Come to find out, all of that was a massive pile of bullshit.
When I was diagnosed anemic, my doctor told me that he didn’t understand how I walked into the office under my own power because my blood cells were so small and my iron counts so few. He wasn’t being dramatic. He was truly surprised. And yet at that time, I was working 55 hours a week, on my feet, often with no breaks in my day, then coming home and helping out with my sister’s kids. When I told him this, he was silent a moment with his mouth open. At the time I thought it was funny. I laughed. It also made me a little uncomfortable, but I had trouble really putting my finger on why. That day he gave me an infusion of iron straight into the vein. For the next three days, I could not sit still. I did not sleep, I did not stop, I did not slow. My coworkers, concerned, asked what was wrong and my customers, worried, asked my coworkers if I was on drugs or was having a breakdown. For three days my body went crazy relishing in the flood of oxygen from which it had been so long deprived. For three days I was Ironman, unstoppable.
Then I passed out, slept for a day, and returned to outwardly normal behavior. Inside though, I was stunned at how much easier my days had become.
Since then I have dealt with epic migraines, increasing digestive pains, increasing body pains, a complete lack of restorative sleep, a body in a steady state of decline and collapse. I didn’t know that I was working toward a collapse. I had no idea. I did what I always did. I moved from feeling incredibly better (on a relative scale) back to standard, and steadily downhill again, all the wonder trying to figure out what. What was the culprit? What was dragging me down?
And now, health fully collapsed and no longer able to work, I think I have the answer. Yet the diagnosis of my sleep disorder doesn’t bring me a sigh of relief, neither does hearing that the doctor might be able to treat this. Instead I find that I am angry. Not a little bit angry. Not frustrated or dramatically annoyed. Not resentful. Not bitter. Angry. Very deeply angry. Angry with myself for believing all that nonsense I was told (and that I told myself) when it turns out, I’m weak. Neither am I lazy or incompetent. I am not “doing it wrong.” No, I am strong. I am incredible. I am amazing. I am remarkably sane and calm, coherent and capable. I held my life together by sheer force of will for more than years and (a few of)my doctors were astounded. But only my doctors. Because no one else had any idea, including me, just how much I was coping with. I am angry at myself for believing I was weak. Angry at everyone else who called me weak and tried to convince me that I was just incapable because I was a girl, or I just didn’t try hard enough. Angry that no one else magically/psychically knew what was wrong and waved a fairy wand to fix it. Angry at God because, good grief, after everything I dealt with as a kid, can’t I catch a break? Angry at my parents, irrationally because they couldn’t possibly know or magically fix my ills. Angry at years of doctors who didn’t think anything of it. Just try harder. You just need to do this one thing and it will all be better. Pay more attention. Devote more time. More energy. Angry at a society which offers snake oils and feel good nonsense that doesn’t work. Angry at teachers who weren’t responsible for my inability to meet their demands.
Angry at former friends who walked away because they believed it was something I was doing to them. I’m better off without them and have been for years. But I’m angry now.
I’m so angry that I’m angry about being angry.
I pushed so hard for so long to keep up with all the normal people that my eventually health collapsed because I broke myself trying to do the impossible. I repeat: I broke myself trying to keep up when my body literally did not have the tools necessary to do so. When I should have been physically incapable of doing what I did manage to do.
I should have been astounded at my own strength. My stamina. My willingness to pick myself and try again and again and again. But instead I belittled myself for being weak.
I am fairly certain that I now know what caused the break for my fibromyalgia. It wasn’t a difficult illness or injury. It was years of pushing myself beyond my body’s limits in an effort to keep up with healthy people. People whose bodies mostly work for them, not against them. People who weren’t battling against systems that didn’t want to function.
My diagnosis? That I can’t sleep? The pettiness of it is enraging. I want scream myself hoarse, I want to punch someone in the face and claw someone’s eyes out. I want to smash everything in reach. I want someone to blame so I can take all the broken shards from smashed things and rake them with my bare hands across the bare flesh of that person and watch them bleed and cower and cry while I cackle with glee. I want to rage.
Then an evening passed. And another. And another. A week has followed, then two. My anger flooded through me, a deep torrent which torn down years of cheap posters and plastic sheeting and scaffolding from the city of my mind. It has washed away years of ingrained dirt and soot from fires which once threatened my sanity, then were doused and left ash and coal skeletons, stinking of burnt plastics and paint. All washed away now.
My anger did not mark me with added pain. It did not score deep with bitterness or scar with fear. It was a cleansing rain that healed my eyes and allowed me to see myself more clearly than I have seen in a very long time. I have found my footing and finally begun to learn how to walk, and as I look around, I am surprised at what I see.
I see me.
I am beautiful.
I am strong.
God made me and I am His. He has permitted my infirmities that I might learn to lean more deeply on Him and not depend upon my own resources, which will always be too few. The strengths He has given me are not of back and limbs, of muscle, sinew and bone, but of heart and mind.