Wednesday, 15 May 2013

Life, Death and Buddhism; by Carol

Richard asked me to provide a guest spot on his blog after reading some of my thoughts and I am very happy to contribute how I can. My name is Carol, I am 50 something years young, I live in Scotland and I was diagnosed with ALS in February 2013. Here in the UK we call it MND or motor neurone disease. Now I have the disease I can trace symptoms as far back to at least June of 2012, and I wonder if some times of sickness many years in the past might have been due to ALS.

I had a wonderful career and life until the illness took hold in December and its effects have been devastating on me and are difficult to deal with. I was a team leader for one of the best oil consultancy companies in the UK. Now I am more or less housebound, disabled, feel sick and fatigued and have had to retire from my job. I live on my own but I have a wonderful dog to keep me company. The support forums for ALS have been great and there I came across Richard and his blog which has been an inspiration to me. We are not alone in this disease.

I noticed on Richard's blog a comment about a life being cut short through a tragedy and I felt I had to email Richard how I felt about that and death. Death is something we don't usually want to talk about, something we want to put to one side.  With a terminal illness like ALS it cant be put to one side. We can think that with this disease ALS/MND we have the worst deal. I'm not so sure. Dying is not easy however it comes.  

To have life cut short through a tragedy or accident is devastating for everyone. I think in my case I have time to wrap up loose ends, to say things to people I normally wouldn't, to pass on how I truly feel, to become a hero, to make amends, to leave this life well, to help others however I can. I recently learned of the death of one of my heroes in my professional career, a professor. I had known him for over 40 years. He died recently after a battle with cancer, which I can imagine must have been beyond endurance and painful. No I'm not sure that ALS/MND is worse than any other terminal illness.

I don't question why I am dying and I don't think 'what have I done to deserve this'?. There is sometimes a view that somehow we have done something wrong - to die - to get ill, somewhere we have sinned or abused our bodies. I don't see this, I don't feel this way. The simple fact is that everything that is born dies, from a tree, to an insect, to a human being, that is the way it is. I am Buddhist by the way. I came across Buddhism when I was very young. I picked up a book on it and it just made immediate sense to me, it seemed to talk to me about things directly and simply in a way that I could understand, that was rational. So I accept since I was born then I will die. The one follows the other, cause and effect in action.

When I was doing my PhD (I am a Dr. in science) a close friend of mine decided to become a Buddhist monk in a Buddhist monastery in England and there I came across some great people. I stayed in their community several times. I listened to one of my teachers on Buddhism again recently on YouTube (search: Ajahn Sumedho Death, is the talk I listened to) and it again struck me, to hear his voice again and to feel his wisdom.

Ajahn Sumedho's view is that life is a state of death, an inevitable process resulting from birth. In order to stop death and suffering one has to stop birth or rebirth in the first place. In his view this time we have is important as we have a chance to see the realities, to stop rebirth and further suffering. There I think is heaven or nirvana or transcendence. Oh I wish it were that simple!! Meanwhile I struggle with the realities, the effort to live, the effort to move and do basic things like eat!, of trying to deal with things, to stay brave and strong and simply to do the best I can.

Thank you Richard for your inspiring blog and for giving me an opportunity to speak on it. My best wishes and love to everyone, Carol


  1. Hi Carol

    I want to encourage you to live as fully as you can for as long as you can. And when you cannot, then it is time to move on. As you say, death is part of the deal, it's the living part that is hard.

    Thank you for this.


  2. Thank you Carol for your insights into ALS. I am Richard's mother and it has been hard for me to accept what comes next. I think of it day and night. Mom's are like that. Yes death is inevitable in all life but It is the way of dying for ALS patients that causes me much grief.
    Thank you for taking up Rick's offer, it was interesting to hear from you.

  3. Carol, I liked your comments. You have a good and positive perspective.