Lately, some of my friends have
been asking me why I don't write more about my experiences and journey with ALS.
"It's inspirational to read
about your struggles and the courage and lessons you have learned," they
say. "It helps us to appreciate our lives and all that we have."
Well, I'm glad to hear such
lovely encouraging words and it makes my heart sing to know that I have so many
friends who care about me and my daily fight. First, let me say that I don't
feel courageous at all, I'm afraid, sad and anxious the majority of the time. I
struggled to stay positive, but often lose the battle, and yet, I have hope of
winning the war. I vow not to succumb to depression. I don't think this is courage,
it's a necessary reaction to keep myself sane and alive.
Then, I will also admit that I
have learned some lessons – some from what I have experienced over the last
seven years, and other lessons by the fact that I now have time to engage in
hindsight and view the successes and mistakes I've made throughout my lifetime.
There is a lot we can learn if we can set aside our busy daily lives and
reflect on what we have already experienced. I have that luxury. I have plenty
of idle time for reflection.
So, what about writing more about
these lessons and struggles?
Simply put, I think it's
avoidance. I don't want to write about the reality of my life, it's too scary
and to ugly to think about. The thought of putting in words how I feel when my
wife has to help me on the toilet, or my son holds my head when I aspirate and
spit phlegm and pieces of food into a bucket, is terrifying. I don't want to
face the reality anymore than I have too. I'm not sure I fully understand how I
feel when I wake my wife up in the middle of the night so she can move my body
position – I know I feel helpless and sad. I feel enormously frustrated that I
cannot move my own leg, and terribly sad that I have to wake her up from
precious moments of sleep that she badly needs. I don't want to dwell on the
sadness and helplessness, at least not now, so I avoid writing about it.
I can understand why some the
best memoirs are written near the end of life, after a change of career, or
drastic new direction. I think then the person is ready to face those
experiences, good and bad, once again. That's why think it was easy to write about
the first 25 years of my life, "An Extraordinary Life, lived by an ordinary
person." That was a time when I made a drastic change in my life's
direction. It was easy to reflect on it 25 years later.
Honestly though, I have written some pages about
my current ALS journey and life thus far. This little tidbit is one such
endeavor, just for those friends who ask for more. You can find other writings,
website and blog – they're just not very well organized or well-written. I am
also working on a more in-depth novel, blending my daily life with ALS with the
fantasy of meeting a woman shamaness living on the big Island. She guides me
through my depression and the big questions of life. It's going well, but I
don't expect to finish it for several years – I have more to learn first. In
the meantime, I do put a little bit of myself and my lessons learned in each of
my stories – you just have to look for them.
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