I want to thank those of you that read and interacted with me on my recent “you don’t look sick” series. The series started out as my take on having a condition but not allowing it to define me. I allowed it to morph into my telling that basic story that has pervaded my entire blog but in greater detail. In a sense, I told my whole story.
I reviewed the series this morning, fearful that I had painted too vague a picture and not stayed on point. All in all, I think I said what I wanted to say and stayed on point. I also read the comments and it was then that I realized that I had left something out. Considering that I read Elizabeth Kubler-Ross in High School when two of my best friends died in a fiery car crash I should have recognized that I left out Acceptance.
When I began this blog I was at a low point. The title itself, Superman can’t find a phone booth, was conceived in a hospital bed and suggests the futility of being once-powerful and now without an outlet. As my blogging journey progressed I began to come to grips with my homelessness, financial situation, relationship with my children, deteriorating marriage and place in the world. The one thing I did not embrace was the obvious-to-everyone-but-me fact that my illness was not to be ignored anymore. No amount of positive thinking, Tony Robbins podcasts or denial was going to make me better.
I speak often of the fearless, forge-ahead at all costs attitude that I was able to maintain for so many years. I still maintain that it was the right thing to do. I managed to keep my family worrying about me to a minimum and it allowed me to work for as long as I could. But, I always rejected the notion that it was denial. I joked about it when confronted with it, spinning it back on my detractors with its success rate. Hell, even my doctors begrudgingly admitted that it worked for me. But only recently, perhaps it was today when reading the comments of some bloggers who are “in the know”, it occurred to me that I have moved past the denial phase and have achieved Acceptance. This is a bittersweet step for me.
I can accept that my condition will not go away if I ignore it. But I’ve never really allowed myself to think openly and honestly at what the future holds, even though I know. Years of Dialysis, a possibility of another transplant and a hope for a cure. Without my denial, will I resign myself to this path or fight it?
I can accept that I may never work full-time again. This kills me. But my recent dabble in part-time work, albeit fun, has taken a physical toll. I don’t think it’s a matter of conditioning, my body really can’t take it. Consequently, I have to accept that 2 days of work requires two days of recovery.
I can even accept that I will likely live in my mother’s house until the day I die. It’s technically mine, she is leaving it to me, and she will outlive me anyway so I’m getting my inheritance now.
What I am having difficulty accepting is how lousy I have felt and the lack of breaks between symptomatic episodes. I have always had “flare-ups” of gout, edema, cramping and other fun little side effects of kidney disease. But they passed and I would experience a period of relatively good health. Since this past summer, it has been something almost every day. For a while, I was hopeful that I would improve, be relatively symptom-free and look to the day when I can resume some of my favorite activities; biking, hiking, weight lifting, basketball. Today, as I have spent most of the day on the sofa because my blood pressure is dangerously high, I am lightheaded and dizzy when I stand up and extremely listless and unambitious after a busy, but not that busy day yesterday. I am down, and I never, ever get down.
I don’t know if I can accept that a mere 3 years ago I was playing basketball with teenagers, yet my shoes are now collecting dust.
That I was a part of a mountain bikers group that became great friends but now my bike is sitting sadly in the corner of my garage.
That I was at the gym 4 days a week, moving weight and feeling strong. Lately dragging my ass out of bed counts as Cardio.
Fortunately, I do accept that I will never completely give up. I keep the bike and the shoes not to torture myself but as a reminder of what feeling good feels like. In the event that things turn around, or dare I hope for a medical advance of some kind(?) that these things will be at my disposal again.
I’ve never mixed hope and realism before. So far I can tolerate the taste. It’s not the same type of relationship as giving up and accepting.