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.
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
Hi Carol
ReplyDeleteI 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.
Richard
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.
ReplyDeleteThank you for taking up Rick's offer, it was interesting to hear from you.
hugs
Nan
Carol, I liked your comments. You have a good and positive perspective.
ReplyDelete