Thursday, October 7th 2010

A conversation with the hospice chaplain

It’s been a lovely sunny morning here at the hospice and I’ve taken the opportunity once again to sit outside overlooking the garden. The close board fence that will separate the labyrinth from the garden has now been erected and today work was under way to completely refurbish the pond, with new brickwork around the boundary and a new pond lining planned as part of the upgrade. At the moment the whole thing looks like a building site although there were still plants here and there adding a splash of colour. The Sun’s intensity and position in the sky meant that for the first time I needed to wear my photochromatic glasses to avoid the glare.

Today I had an opportunity to meet up and chat once again with a very interesting man; Andy, the hospice chaplain, someone who I find very approachable and who is capable of talking on a wide range of subjects as well as asking interesting questions. At first we talked at some length about the circumstances leading up to my re-admittance to the hospice, my frustration at the way my care package had been withdrawn after two years, my sadness at having to say goodbye to some people who have been very loyal to me, my concerns about the limited options I’m facing, and my fears for the future and what will happen when I’m discharged.

Andy then asked a very interesting question, one that I don’t believe anyone has asked me before, but one that got me thinking. And the question was “do you think that the disease has changed you?” I reflected on this for awhile and then answered that I believed I had changed as a person over the past few years since being diagnosed. I explained that shortly after I had received the devastating news of what I faced I realised that there were only two possible ways I could deal with it. I could either turn inwards and grieve for everything I had lost and waste the time I had left to me, or I could look upon each day as a gift and try wherever possible to seek laughter and enjoyment, and to keep my mind fully occupied. I also said that because of the nature of the disease and the way it totally dismantles your physical interaction with the world, that it was necessary to have a robust personality if you are to stand any chance of dealing with it day after day. I have had to somehow find an inner strength that I never imagined I possessed. I’ve also had to “toughen up” and become more vocal and assertive when fighting for things I believe I am entitled to or need. Because I have no one else to advocate for me I have in a sense needed to be a one-man army. But there was a time before I had ever thought about MND when I could never imagine having to fight or be outspoken about things the way I do now. I guess to some extent it’s a survival instinct; you either sink or swim.

Later in the afternoon after Ann had fed me my dinner and I had some time to myself once again I reflected more on the question. I realised that at least in my particular case there had been some kind of compensating factor at work. As all the original skills that I possessed were being lost I was somehow being compensated with an increased ability to articulate myself both verbally and textually. I also noted I was gaining a heightened ability for creative expression and a strong desire to help educate, inform, entertain and generally pass on information that might help others. Perhaps what we have here is something similar to when one of the five senses is lost and it is claimed that the others will compensate for it. Perhaps one part of the brain is waking up just as another part is going to sleep. Food for thought.

So to summarise I think that the changes that have happened to me as a person have been a combination of intentional i.e. a need to deal with a downward trending situation, and unforeseen changes driven by this need to communicate and a realisation that time is becoming ever more precious. It will be interesting to hear anybody else’s thoughts on the subject, particularly those living with the same disease as I am. The comment field below is primed and ready…


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4 Responses to Thursday, October 7th 2010

  1. carol diane says:

    Dear mark
    Although I am not afflicted with the same neurological ailment you have, I do have my own chronic and life-altering health problem—which plagues me. I marvel and am fascinated by the fortitude and joy(!) you share with us… while you sink into physical paralysis and the stark, potentially frightening state of physical vulnerability. But your character remains safe and sound! Safe and sound!

    You are on your own, as I am—and many others, too. I read about people with spouses and immense support systems. So what! Those of us who have remained more solitary, and have relished it, must draw from another source of strength: ourselves.

    Your consistent and brilliant sparkle of independence—the epitome of the pioneer spirit!!!– is the guiding light that illuminates the path for me, and many, many others. You are our avatar of grace, strength, and beauty. You are “blazing the trail!”

    And we love you for it.

  2. debbie brook says:

    Hi Mark,
    Catching up with your blog at long last!!! Hope to see you later today or tomorow
    Take care xxxxx

  3. Farah says:

    Dear Mark,
    How extraordinary how you can get to a web blog and be glued to it all day! I Googled “Rea Assist wheelchair” and arrived on your blog. Mom and I were trying to find a chair for my Dad as the Nursing Home that he has recently gone into did not have one and this was used in the hospital for him. Dad does not have MND, he had a fall on un-gritted roads in our town centre on Jan 7th this year, leaving him with extensive paralysis, no ability to speak or swallow but his mind is intact. Your blog has given me so much insight into the world my Dad is experiencing, particularly on manual handling. You have a gift for communicating and the work you are doing will reach the hearts of so many and inform the minds of so many. I will be returning to your blog frequently.
    Warmest regards and thanks,

    • Farah says:

      I am sorry I do not know how to use web sites. If you find this, Thanks. You are fantastic! You have told us how to do so much

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