Sunday, 28 August 2016

I Am Not Strong

I'm sitting here in my wheelchair wearing nothing but a polo shirt from the Port of Sidney, BC. My rear end is resting on a pair of underwear to protect my wheelchair seat. The reason for my distressful state is the toilet. When I go to the toilet, I essentially have to disrobe my lower half. Then, once complete, I can no longer dress on the toilet. So I make the very difficult transfer to my wheelchair, using my underwear as a protective cover for the seat. I'm not wearing compression socks today; I've spent most of my day in bed so I didn't really need them. Eventually I will have to re-dress myself.

This shirt makes me think of the days and months in years gone by which I would spend aboard my sailboat, visiting and re-visiting ports and towns along the south coast of BC, in the Gulf Islands, around Vancouver Island and right up to Bella Coola. I know that coast so well, I can still see so much of it in my mind, fresh breeze blowing, clouds drifting by, seagulls screaming, whales blowing, fish jumping.

These days the ship of my life is directionless. It possesses no latitude nor longitude, only lassitude. It has no compass heading, no point for which I am making except perhaps death. I am drifting only with the tide of happenstance, no wind in my sails, making no headway. I make only leeway and setting aback. I exist merely to eat, breath, sleep, and go to the toilet. And only eating is easy for me now.

Someone asked me recently where I got my strength from. I answered that it came from the friends and family around me, helping me, giving me a reason to keep going. Yet I don't think of myself as strong. If anything I feel like I am one of the weakest I know. I have no strength of my own. I am essentially incapable of caring for myself. I am reduced to begging for help in so many ways. My emotions are beaten by this disease, this loss of self empowerment, this inability in so many ways. I am not strong just because I fulfill those four basics of life. That is just surviving. I want to be more than a survivor, but I cannot bring myself to that emotional effort. It's all just too tiring.

The strangest thing about being bodily exhausted all the time is that my mind just can't figure it out. I can be up for hours on end, moving little, doing little, slouched on my couch, My body is safe from the effort of movement. I am tired, yet I cannot sleep. My mind keeps going, even though my body has stopped. When my brain gets tired enough to sleep, it is so often completely out of step with my body, with my circadian rhythm, with day and night.

Yet I sit there, lacking the strength to go to bed, to make that transfer, lacking the willpower to force my body to comply. I am weak physically. I am weak in will. I am weak in emotion. I have no strength, not of my own. There is no reason for me to move, yet eventually I do. I'm not strong; by this time I am just so bored that my mind actually is ready to release me to something else. And then I sleep. Or eat. Or go to the toilet. Breathing is constant.


  1. I think you're very strong. But, if YOU don't think so, then my opinion doesn't count.
    When we moved out here 2 years ago, we wanted to charter a boat for a vacation and explore the Gulf & Discovery Islands, and head as far up as the Haida Gwaii, but put it off til retirement. Ah, well.
    What was the name of your boat?
    I hope your day is better tomorrow. xo

    1. My boat was named Tokolosh. It was a 27' Catalina. And it is not too late for you to do this. Do it now. There are boats suited for you.

    2. I wouldn't enjoy it now. I crewed on a barquentine when I was younger, and part of the appeal was to actively sail again. It's okay, the RV has made a nice replacement for adventuring :)
      Tokolosh, like the zulu mischief maker?

    3. Yes to the Zulu mischief maker. And I completely understand the issue about not sailing. My truck has become my new sailboat, although I can no longer afford much in the way of travel. Do what you can, while you still can do it. All too soon you will discover that you can't, having lost energy and finances. You are fortunate your husband is with you, and you can travel with him.

    4. Very lucky indeed, although at the rate I am progressing I am not worried about being a burden too long.
      That's a great name for a boat, I'm sure you miss her. What it is Shakespeare said about better to have loved and lost than never to have loved at all?

  2. You are not as weak as you think.The eloquent way in which you tell your gut wrenching story is anything but weak. Your words are mighty powerful, sir, and help way more folks than you realize.

    1. And yet all I really want to do is get in my truck and run away.

    2. Please put on your underwear before you go running away. Think of the children!

  3. I've just come to your page in recent days and am moved to see you have found this way to sail to the world's harbors. (FYI: I'm in Baltimore.)

    Having had two friends with ALS, I'm somewhat familiar with experiences you may be facing, and am struck that your fate could also happen to any of us at any moment. So while I don't share your struggled, I'm there with you.

    Your current bathroom dilemma led me to consider the origins of your last name, and the potential to don a kilt (that may well offer more simplicity.) Interesting?

    Regardless, I am here listening, and sending best wishes your way....