Real People ... Their Stories
Kurt Goeser
To Listen to the Complete Version of Kurt's Testimony including the q and
a with Pastor Terry, click here.
Who am I?
My name is Kurt Goeser, I am 42 years old. I am a husband to my beautiful
wife Brenda, and the father to two amazing kids, my son Daniel (6) and my
daughter Tessa (4). Like my mother in Wisconsin, I am the youngest of 5
children, the middle-class product of a Midwestern farm town. I graduated
from the US Naval Academy, served my country with pride, earned a graduate
degree, and embarked on a business career with some success. I have led an
amazingly lucky, exciting, and full life. I've traveled a good part of both
hemispheres, crossed 3 of 4 oceans and have all kinds of friends of just
about every color and creed. I am a do-it-yourselfer, an outdoorsman, foody
and fisherman, but these days, mostly a father.
By any measure, I am a lucky man. Not the least of which was my decision
earlier this year to join this congregation and all of you as Brothers and
Sisters in Christ.
Unfortunately I have some sad news to share with you today.
My disease
A few weeks ago I was diagnosed with a terrible motor neuron disease
called Amyotrophic Lateral Sclerosis (ALS), also known here as Lou Gehrigs
Disease. ALS is a degenerative condition which affects our voluntary
muscles. Essentially, the electrical connection from the brain, thru the
spinal cord and nerves to the motor neurons stops working one muscle fiber at
a time. Without the neural impulse, eventually the muscles of the body die.
While every individual's progression is different, as the disease advances,
ALS patients eventually become quadriplegic, and require respiratory and
nutrition support. Special handling.
However, with rare exceptions, ALS does not affect cognition
significantly. Also, the heart, and usually the muscles of the eyes are
unaffected. A person with ALS retains all of his/her senses, and mental
capabilities, just doesn't have the body to go with them. Advances in
technology have allowed people with ALS to communicate throughout the
progression of the disease.
ALS strikes an estimated 5,000 Americans every year. There is no known
cause, limited treatment, and no cure, yet.
ALS strikes all kinds of people everywhere. Veterans are twice as likely
to contract the disease, without regard to branch of service, when or where.
Because of its statistical rarity, ALS is classified as an "orphan disease",
and has not been a great focus of drug research by pharmaceutical companies.
However, researchers globally have made great strides over the last few
years, and there is good reason to hope that one day soon science will solve
the mystery of this awful disease, which in turn could be the key to treating
other diseases such as Alzheimer's or Parkinson's. I encourage each of you
to learn more about ALS, and recommend www.alsa.org as a good source of information.
Where are we now?
Obviously, Brenda and I, our family and friends, have been devastated by
this news. I think we are over the initial shock and trauma of the
diagnosis, and are well into coping. Brenda has been incredibly strong
throughout this process; she has kept my head up, and kept us moving forward.
I am lucky to have a good job with a great company that I think will continue
to be very supportive. I am lucky that, in my view anyway, my work really
only requires my mind and a way to communicate, and I therefore plan to
continue working for as long as I can.
We are also lucky to have an incredible support network, including some of
the best neurology and ALS specialists in the world working with me in
Houston. I am also grateful to our fantastic friends here in Austin, many of
whom have joined the congregation today. I am indebted for the continuous
support of my good friend Pastor Terry, and all of you gathered here today.
Whether you knew what we were dealing with or not, this church has been a
tremendous help, and I am grateful for this opportunity to thank you.
Our primary concern is naturally for our children, now and in the future.
Brenda and I consulted a friend and prominent child psychiatrist after I was
diagnosed to get some council on how best to handle it with Daniel and
Tessa. Curiously, he spent most of the time examining my head. His advice
regarding the children was to give them enough information to explain
honestly what was going on, but not so much that they get scared about things
that haven't happened yet, or think they are somehow a part of a "disease".
Let them continue to be kids, don't make them caregivers, but let them help.
So for right now, Dad's legs aren't working so great, he needs a cane and
foot-brace to walk, and a little extra time to do just about everything.
This week when I told our son Daniel that I was going to the doctor, he
asked "Dad, what if your leg doesn't get better?" When I replied "Well, I'll
still be your dad, won't I?" he thought that was just hilarious.
This disease is different for everyone, but I feel ALS has come up on me
fast. Four months ago I was riding my bike 10 miles in the hills around this
neighborhood, finishing off with an ascent up a street called Mountain Climb
to our street, Laurel Ledge. Today I struggle to walk up a ramp against a
stiff breeze.
But I am working hard against the onset of the disease, mainly thru
nutrition and fitness. The doctors I trust and respect the most, who are
incredibly committed, even obsessed with finding a cure for this disease,
tell me that the conventional wisdom about the survival of ALS patients can
no longer be accepted, that patients are living longer, better lives.
So now most mornings you can find me swimming slow laps in the pool at
the "J", and I start and finish the day with an awful potion of vitamins and
assorted foul tasting powders. I also start and end every day with a simple
prayer, which occurred to me the first day I was diagnosed: "Father, thank
you for another day with ALS".
What next?
In a nutshell, my plan is to continue being me, adapting as I go to my
condition, living each day as an event. Brenda and I are committed to making
a memory for our family every day, and I don't think we have ever been more
in love. If you can, I highly recommend living a few days like you have
ALS. You will be amazed at how you appreciate the simple beauty of life, how
little you worry about unimportant things and make time for important things,
how much and how well you talk to your friends.
I also plan on following thru on a commitment I made to God by joining
this congregation, taking a vow to Christ, and seeking a baptism in His
name. As Terry and I discussed before these medical issues erupted, I have
led an incredibly blessed life, and have a profound desire to give something
back to the world. While not the opportunity I was anticipating, I now have
an amazing one to pursue.
Despite my limited, but growing, experience and knowledge of how people
deal with this disease, I think there is a lot of room for improvement.
Some friends and I would like to start a charity, focused on corporate
giving and raising public awareness in order to help less fortunate ALS
patients. I think we are in a pretty good position to do it. In addition to
funding much needed basic research into the reason muscles go past the point
of regeneration, I would like to help ALS patients with several outreach
issues my experience shows are underserved
Right now we are still in the planning stages, but stay tuned, we will
keep you posted.
What do I need?
Time, but time flies
I need a miracle, but I believe I have already been blessed with a
couple. I believe that God grants us miracles all the time and that they
often go unnoticed, until they are revealed by unforeseen circumstances.
I have only asked a couple of things of my friends regarding my
condition. First, if you can think of it, please don't say to me "I'm so
sorry for you", only because I am trying very hard not to feel sorry for
myself. I have a lot to be thankful for. No offense intended, but the
doctors don't know how much time I have left, I don't know how much time I
have left, and frankly neither do you.
I prefer that you greet me as you always have, with a "Good to see you",
or a "Hang in there", or my new favorite "May Peace be with you".
I know that many of you will offer your thoughts and prayers for our
family. These are much appreciated. As a long-time (on-going) sinner, fresh
from a baptism, at this point I figure the more people that put in a good
word for us with God the better.
My second request is that you say a prayer for yourself.
Please say a prayer now, for what you hold dearest, for what you take most for granted in your life.
Pray for your Faith, that it will sustain you when you need it most
Pray for your Hope, that you have for your future
Pray for the Love, which surrounds you every day, and is hidden deep in your heart
Amen
Thank You
Kurt Goeser
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Page last modified on 07/20/05
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