Acceptance

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.

13 thoughts on “Acceptance”

  1. A very powerful post! I know it cannot be easy to share your story with the world, but it is much appreciated, not just by me, but by lots of people. I don’t know if it helps any or not, but myself and lots and lots of other people are wishing you well. Even people who may not comment on your posts are wishing you well and wishing there was something we could do. Hang in there! We’re rooting for you!

    Liked by 1 person

    1. Thanks man. I hope everyone know that I’m not fishing for sympathy, so not my style. But it has been so helpful to put my story out there. It unburdens me to move on, it helps to look at and re evaluate and to get the feedback of some great people. I get down sometimes but always come back more motivated

      Liked by 1 person

      1. I knew you weren’t fishing for sympathy. You are just telling your story and it is a very compelling story. I (and others) appreciate you telling it. We are all human and we are all on this journey together, though we may be taking different paths, but we can always encourage each other and empathize with each other.

        Liked by 1 person

  2. I have never structured a novel so most of this is very new to me. But I’m fascinated.
    I’m not sure I could ever do justice to her story. It’s so close to you.
    I will think hard about this, an amazing surprise to log on and see this

    Like

  3. Here’s the outline to the story I wanted to write for my friend. I couldn’t do it, but if you want to take on the task to e-walk the Heyson trail, or any other path, it’s yours to use as you wish.

    Title: E-Walking the Heyson Trail
    A novel/beat sheet ; Genre – contemporary

    Initial Idea: The desire to undertake the journey – for real. The impossibility of that. The shortness of life. The google maps journey – how to describe it, how to feel it without being there, how to make it a journey.

    The Log-line: It’s about a girl who is bedridden, sick and dying who wants to escape the prison of her body by undertaking the walk. Others do it, why not her? She can get the Google-Maps, see the trail, imagine each step, smell and feel and sense each section of the trail – all the way to the end.

    Where, when, who.
    OPEN: Annalise, the bad news, her friends
    SETUP: the list – the thing she most wants to get done before …
    CATALYST: what else does she have? Messages to/from.
    BREAK: forces the issue – set it up or all treatment refused; no visitors at all – and to death’s waiting room.
    B-STORY: Who’s doing the walk; who’s doing the other stuff.
    PINCH: A has a setback, bad response to meds.
    FUN/GAMES: the photos, the weather, locations, local stories
    MID: is she dead? Sees the trail, talks with friends, smells the dry earth, hears the critters, smells the Sturt desert pea.
    AGAINST IT: in sleep – can she wake? Realises it’s the drugs – struggles to speak wishes to remain alert.
    PINCH: family refuse permission. Legal action by friends.
    ALL IS LOST: law case lost; parents win.
    DARK NIGHT OF THE SOUL/LULL: A. considers letting herself go.
    BREAK: No, if there’s only one thing she can do, it will be this.
    PREP FOR FINALE: the 3d e-lines direct to the walkers.
    SHOWDOWN: the long chats on the walk, blisters, etc. (is it hallucination?)
    END: walk over the lip of the dune, just as the sun sets in the west, the ranges blasted with red, like her heart-blood, but with the undertone of a constant beep. She made it.

    Summary:
    One sentence summary:
    One para summary:

    Scene Outline
    Part 1
    Scene 1 – goal:
    Conflict:
    Setback:

    Scene 2 – reaction:
    Dilemma:
    Dec:

    Like

  4. Things are not the same as yesterday, I do believe it is still possible to do all those things you still enjoy, you just have to do them slower and for a different reason. Maybe it’s time to let someone else lead the dance for a little while, not forever but just a rest. Always hoping the best for you 🙂

    Liked by 1 person

  5. Hi Billy, as I am new to your blog I didn’t have much of an idea what this post was abut until I read ‘kidney disease’. I know about that. I have a genetic kidney disease which I’ve known about for 20+ years and it is being treated with a handful of drugs morning and night.
    My issue is a protein leak and so far my rate of decline has been stable the past 5/6 years. For me it is there and I have to watch what I eat, my BP is ok, drugs keep that under control. The diet is my biggest issue, some drugs are appetite enhancers so I am always hungry but my kidney dr tells me to lose weight, I try but you know the old addage,” the mind is willing but the flesh is weak.”
    But like you I don’t allow my situation to define me, though growing old comes with things you didn’t anticipate happening to you.
    So I hope you hang in there, best wishes.

    Liked by 2 people

    1. I’m sorry to hear that but I am encouraged by your attitude. This is my second time around, I had a transplant that is failing. So I am dealing with a lot of frustration as well as the symptoms. My condition is a nasty one called IGA Nephropathy.
      Thanks for the good word brother

      Liked by 1 person

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