August/November 2002/2003

The following is a poem I started one day about two or three months ago when I was feeling particularly defeated and without much hope. There are many days like that. I have since tried to add to it and transform it, because, underneath it all I really am an optimist –it’s just that often I have a very thick veneer of negative and pessimistic stuff to get through on the surface. But I imagine that pretty common in this kind of situation, living with ALS. –so, please read it all the way to the end…

What would you do if when you touched things everything felt like
        sandpaper or if when somebody lifted your foot, their gentle
        touch felt like crushed glass

What would you do if everything you tried to do took three times
        longer to do (without exaggeration) and even then you spill on
        yourself each time you try to brush your teeth or wash dishes or
        when you pee in a bottle, and especially when you eat a meal
        –because the spoon or fork keeps falling out of your hand

What would you do if you knocked something over onto the floor two
        or three times in a row and each time you could barely pick it up

What would you do if you fell numerous times over the course of a few
        weeks using a walker and couldn’t get yourself up, but then a
        few months later you longed for the day that you could walk
        even if it meant falling twice or three times each day…

What would you do if you couldn’t hold your favorite pet any more, or
        kiss your wife without her bending down to you, or have to have
        someone move your legs for you –when you get excruciating
        cramps

What would you do if you got a power wheel chair and were promised
        a new cushion in a week or two because the one you have is not
        right and is very uncomfortable and after many, many phone
        calls it finally arrives three months later
And then you find that the chair will not fit into the van you had hoped
        to get because it makes you too tall (and it was picked for you
        especially so that you could become more independent and
        drive a van…) and by the time you get a van you can’t drive
        because the illness progressed too fast, the insurance companies
        screwed you and the money you had to pay for it after raising it
        from friends had to go for personal care because insurance
        won’t pay for that either

What would you do if your insurance company only paid for one
        commode and when it comes you cannot use it because it has
        not the adaptability for your new losses – and the insurance
        company refuses to give you another, you have to pay a new
        one yourself or find someone who will donate one –and then a
        miracle happens and someone from Cape Cod gives you not only
        a new commode but one that changes into a shower chair and is
        on wheels so that you can be rolled around anywhere in the
        house -and you think "Wow, the world is full of Angels"

What would you do if your wife were exhausted every night from
        caring for you, worrying about you getting sicker and dying and
        holding down a full time job at the same time, and spending
        hours and hours making phone calls to foundations who fund
        organizations but do not give money to individuals, insurance
        companies, health-care agencies and trying to sort out the mess
        that they call "Priority Health Care"

And what would you do if your friends were so great and supportive
        that they raised thousands of dollars to help you, performed two
        benefit concerts in your honor, created a team of dozens of
        people to help you every day and be with you and make you
        meals and give you rides

And what would you do if you created the best alternative health care
        team of people to help you out of sheer will and grace because
        the traditional hospital/medical system had nothing but tests and
        more tests to offer and bad news and toxic drugs that won’t
        guarantee any good results –and you have to pay for it all
        because insurance companies will not pay for "alternative care"

And what would you do if you had so much love coming your way from
        within and without that it moved you to tears more often than
        you could report

And what would you do if you had the most loving and forgiving wife in
        the world -this last, very important, because you have been such
        a cranky, angry shit that anyone in there right mind (without
        love) would have left you crawling for help long ago- but no she
        stays with you anyway and always

And what would you do if this was your life and it all happened within
        one year?

I call it living with ALS –something I thought I knew something about,
        since I lived with she and took care of my mother and net knew
        my uncle who both at ALS. But I come to find out that I knew
        very little about what is like to live with ALS.

Living with ALS in some ways is a lot like living any life – but just
living it with more consciousness about details, -of course it requires
slowing down your life, finding the grace and generosity that presents
itself every day through the kind actions of many people.

The day-to-day living in a life with ALS is the hardest thing that I have
ever faced – over the long haul I mean, because it never stops, it
never goes away, it gets worse each day –but there are other
challenges in life that are even more difficult, those which I have only
become more aware of through living with ALS. They are the things
that have to do with healing. And the things that have to do with
healing have to do with changing one’s self. Changing one’s attitude.
Changing one’s way of thinking. Changing the way one reacts to
difficulty, to frustration, to not been able to do or have the things right
at your fingertips that you have been used to in a former life –before
ALS –like getting up and walking to the kitchen to get a glass of water
or some food or to wash your hands or face after spilling something on
yourself – and when you ask someone else to do it and they can’t do it
right away…then what do you do? How do you react? How do you
change yourself? How do you find the patience to accept your fate,
yet to stay with the courage and faith and hope to get better?

To use your will to fight this disease and to use your will to accept your
fate from moment to moment.

These are the questions I work with, these are the issues I struggle
with, living with ALS.

But are not these the issues and struggles that everyone faces? It just
happens to be my fate to be dealing with them in a heightened and
intense period of time and in the manner from which I cannot escape.
For I am learning that when the body goes through illness and
dysfunction it hits home very close.

I still do not feel like someone who is dying. Yet I do feel very much in
my body like someone who is losing and losing and losing tremendous
amounts of control and function.

It is odd for me –on the one hand I have really enjoyed my body,
using it for everything, appreciating the aesthetics of movement and
what a person can do with music with their body –and on the other
hand I have strived to go beyond my body –even before this illness–
to find a quiet place beyond embodied beings. And yet I find that it is
much harder to do now that my body is not responding. This feels
ironic, because I have more opportunity to sit quietly, to go inwardly,
a lot of time alone. But my sitting and my going inwardly are usually
not quiet.

I do find faith and help and hope when I turn inward. I find a lot of
dragons and demands as well. And this is the challenge that has not
changed with ALS but has only become fiercer. And I see it more
clearly and with greater detail. I watch myself go through life with
excruciating detail.

There is such a large range of emotions and inner experience living
with an illness, depending on others for help, watching in such detail
-almost as an observer- one’s life go through enormous changes at
breakneck pace. I wish I could express it ALL -completely. The
depression is mammoth at times –and it gets a grip over me which
often I cannot shake, then other times an incidental detail of life
moves me to tears and shakes that Grip of Depression right off me,
like a snake shedding its skin and basking in the sun. Other times I
have to use sheer will and pull it up from within to go on, and on
again. Most often I am using my will to try to find patience within
myself for myself and for others. But this last part is actually not true
–it would seem that I have little patience for others, and act like a
maniac yelling and throwing fits at such silly things –but the truth is I
am seeking patience from within for myself. For myself.

For myself. It so often feels like a selfish and lonely journey. In a way
it is the loneliest of journeys. I am seeking healing for myself. Healing
on the spiritual, emotional, physical and mental levels. I am seeking it
for myself. I’m working so hard to heal myself. And it often feels very
selfish –and often I have no time for others, no time to give to Ginny
and others. Yet what else can I do -it is my journey right now. It is
what I must do. I have to do this. And I hope to love myself better in
doing this. And through this loving myself and healing myself I hope to
love others better.

Is too much to try to express. But I will continue to try to express
–because it is my nature, I must share who I am and what I am how I
live from within and without. This is my gift to you and my gift to
myself, and God’s gift to me. I know that I am a gift to others, to
those who I work with and to those who help me –as are all people,
my friends, Ginny and colleagues a gift, a great gift to me.

It is too much to try to express. My heart is full. While my muscles
seize themselves of strength, and my nerves respond inappropriately,
yet my soul is filled with love. And I give this love to you.

IT IS too much to try to express.