It's Not Death

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Published in the MDA Newsletter of the Muscular Dystrophy Association

It’s Not Death
New version 2/28/03


It’s not death that scares me right now-
        I’ve been through that for weeks and months earlier. When you get a
        terminal diagnosis it tends to be the first and last thing that goes through
        your head for days and days and days. I spent time each day mapping
        out the roads in my mind to my funeral and beyond.

I thought about the great music that would be played at my funeral. I thought about
        how people will miss me. I thought about all the people I love and how sad I
        am to leave them. I thought about my mom all the time. About how she was
        through her illness, how she transformed herself from being angry and
        depressed to becoming a heroic woman discovering peace and serenity and how
        I hoped to be like her in that way.

I grieved in turn, for her, for me. I thought about joining her and what that would be
        like. I tried to believe that I was not being morose, but practical and realistic
        -yet doomed.

I set before me a tableau of all the people I knew who suffered with illness and died.
        (I didn’t think much about those who did not die.)

        All those I knew working at the Hospice, and friends, and friends of friends and
        all whom I read about who died of AIDS and many, many more.

        And now in reading the ALS Digest and meeting family members of other people
        with ALS, I thought of all of those who had died or would die. It was a lot of
        death.

Over and over I would cry and cry.
        Letting the feelings out was good. But thinking of death all the time, like riding a
        roller coaster that never stopped, was too much.

I struggled each day with the loss of more muscle, losing bit by bit my legs and the
  
     ability to hold things in my hand. Gradually, climbing stairs was impossible,
        walking with a walker was such a challenge because of falling again and again,
        and now there is no more walking in my life.

But all the while, in those first few months, the whole nagging terror was about death.

Now it is not death that I’m afraid of.
It is, of course, living.

Living and healing, getting better or not getting better, going on with life. Facing the challenges of change –the changing life around me and inside me.

The demons inside must change. The many, many demons that poke through at every
turn, the patterns and habits of lifetimes. They come in every dimension and nuance.
Now it’s time to face them, to coax them out gently, look at them, accept them, work
with them, encourage change and move on. Go right by them. And go on.

The hardest thing is to not push them out of the way and down the steps violently, but
to accept them as part of my history, part of who I have been -not that I have to
continue in their way – but that I choose to change.

The most common for me are fear, anger, frustration. These are the bold ones.
And subtle, too. Subtle and bold. They come storming out like fire ablaze. Or they
seep through like water finding the cracks. But change I must –and I am…growing,
healing, forgiving. I ask the angels to help me. I ask God and all Great Beings to help
me. And the people around me, especially my wife, Ginny. I let the help and the
forgiveness in. I let the barriers weaken and the energy flow and the muscles and mind
and heart strengthen –especially the heart.

This is the fear and the excitement that I face this morning and each morning,
        and each night. For nighttime is the hardest time for me. It brings more
        discomfort, anxiety, less sleep,– but also the possibility for more healing.
        Each night as I am laid to bed by my loving wife, I remember to choose
        healing anew, to choose new possibilities, to think and remember forgiving and
        kind and loving thoughts. Each night I remember to ask for help.

This is my challenge.
The sun will rise again.
This is the new day.
I know it to be true.
The sun will rise tomorrow again in the sky as truly it will also rise in my heart.
This is my challenge.
And I am thankful that I have so many loving and caring beings to help me through it.

Blessed Be.


Robert Mendenhall
-
8/24/02 & 11/21/02