By: Sheana Ochoa
Here I am with my dad before we walked down the aisle. Pictures can be so deceiving. That morning I had to take an ambien in order to nap; if I hadn’t napped, I would’ve felt very weak around 4pm when this picture was taken because I have an energy-depleting disease. Just short of two weeks before this photo was taken my dad lost consciousness while driving. He veered off the road, but continued after he came to, thinking he could make it home. Next thing he knew he lost consciousness again and was choking in his vomit off the highway. Paramedics rushed him to the ER. He was still sick and weak on my wedding day, but I think we held each other up pretty well.
In my penultimate blog, I wrote about my dad’s failing health. Since he lost consciousness he hasn’t been the same. There’s definitely something wrong, but we don’t know what. We only know what is not wrong with him: the MRI showed his brain is normal, while the EKG and stress test show his heart is also in good shape. I was sure his syncope while driving was due to a stroke, but apparently it wasn’t. Nor did it have anything, apparently, to do with the heart blockage they operated on back in January. After a month of not finding any answers, I finally got him referred to UCLA medical center. He came to stay with me last week and we started over with new doctors.
By the end of the week I felt I were reliving my three-year search for the cause of my own illness in which every test came back normal. Ultimately a diagnosis of Fibromyalgia was declared when all other illnesses with the same symptoms (MS, Lupus, Rheumatoid Arthritis) were ruled out. I wondered how they were going to find out what was wrong with my dad. Throughout my own journey to figure out what is wrong with me, I’ve learned how little doctors know and how when they don’t know, they are loathe to admit it. They turn the tables and blame you for your woes.
More alarming for me this past week was how quickly I unraveled physically after taking my dad to doctors’ appointments, tests, calling and calling previous doctors to have his records forwarded to his new doctors. Unable to focus on myself, I realized the extent to which I micromanage my life in order to make the outsides appear normal. It may take all day, but by the time my husband comes home I’m usually bathed, my hair cleaned and brushed, the beds made, the dishes put away, and I try to find time between appearances —even if it’s only thirty minutes— to do something for myself so I don’t feel entirely useless at the end of the day.
While running my dad around (which I was honored and happy to do), I couldn’t keep up the façade. My husband had to do things I would usually do, like find an outfit for Noah and take him to daycare, pick up his apple juice, wash the coffee pot. It was truly eye opening to see how quickly my disability announced itself and my foundation crumbled. I couldn’t lie in bed if I felt dizzy or fatigued. I couldn’t plan downtime to be alone and regroup in order to avoid stress so my symptoms weren’t exacerbated. I couldn’t do the things I do, in effect, in order to have the wherewithal at the end of the day to pick my son up from daycare and be present with him and enjoy it. I couldn’t pretend to be a normal mother.
Instead, at night I found myself depleted, stressed, emotional, on the brink of being taken over by the illness. Just now I referred to “my disability”, not only owning it with the possessive “my” but naming it a disability. I looked up disability: “a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job.”
I don’t even identify myself as disabled. I spend every day disguising it. It feels as if I’m giving in if I say: “I’m disabled”, even though I receive a disability check, even though I take medication every day, even though I have a disability placard for when my energy suddenly abandons me and I can barely make it to my car. With all these factors, I still don’t think of myself as disabled. I think of someone without a limb as disabled, but not someone with a chronic disease. I guess it’s all semantics anyway, but it was brought home to me this last week.
Spending every day with my dad, I realized I was just as tired as he was. I had to lie down in the middle of the morning just like he did, and then again when we returned from our office visits. I had to take my medication just like he did. I had to eat many times during the day in order to stave off nausea and weakness. I was behaving like a sick 70-year-old. I’m not humbled; I’m pissed off. I listened to my dad, bewildered that all his tests were coming back normal. He was frustrated and I identified.
Ten years into my illness I’m still trying “cures”. I’ve been on my present protocol for two years and it seems to be addressing the pain component of the illness, but that could also be the anti-anxiety medication I take. In theory, I should have reversed the illness by now, but I’m maintaining faith that this time, this doctor knows what he’s doing.
All these years I’ve been telling myself that there has to be a reason for being sick. I’ve gone through variations of reasoning, from blame –“the illness was brought on by my own inability to accept unrequited love”, to altruism –“I got this in order to help others who are sick”. Then I figured I must have this illness in order to transcend my corporeal body into the spiritual realm. Spiritual transcendence dignified the illness, but never really explained it, mollified it, or answered the obvious consequential question: How does spiritual transcendence serve anyone (me, others, the universe) if I am STILL sick?
So I’m left, like so many others, to just live the best life I can with what I have. There’s no doubt I’m blessed to have been able to have a child. Still, I grieve where I could’ve been and what I could’ve accomplished this last decade if I had lived through my thirties (my prime!) in good health. But I’ve learned one thing: you are what you focus on. If I don’t focus on my illness (how do you not think about something that engulfs you everyday?), perhaps the good things in my life will flourish. I still believe deep down I will cure myself and that hope keeps me going. Focusing outside of myself is still the best cure. I think it may just be the best cure for everything since our society is ego-driven. And I’m back where I began: spiritual transcendence. If I could forget about myself, the illness would disappear too. It doesn’t get the dishes done, but maybe it’s made me a better person? Right now, I’d just like to get to the point where I stop asking “Why?”, stop feeling I have to pretend to be normal and stop judging myself for not accepting that I am sick.