“You’re going to be in a heap of trouble if your recovery
from this surgery interferes with our anniversary plans in November.”
That was my primary concern as we flew from Japan back to the US for David’s
surgery. I’d been planning our 5th anniversary ever since I
realized that it would fall on 11-11-11, even before the wedding.
Although David was pretty matter-of-fact about the surgery and the
recuperation, I knew that any surgery could bring about complications or
prolonged recovery, no matter how simple. David had been having
difficulty walking and was getting very fatigued after a short distance.
He’d had a bad lower back for some time now and it appeared that it was now
time to have it operated on.
We met with the doctor on Thursday afternoon in
Jacksonville. He told us that after reviewing the MRI and hearing that
David was not experiencing any pain in the leg, he suspected that it probably
wasn’t the nerve impingement that we and the other doctors had presumed.
He said that it might be something neurological, like ALS. I’d heard the
term before, but was not immediately familiar with it. I asked what that
was, and the doctor said, “Lou Gehrig’s Disease”. I still wasn’t sure
about what it was, but I knew that this was very serious. As I sorted
through what was being said and the tears that were beginning to well up in my
eyes, David had a much more immediate response. His body went numb on him
and the doctor had to ask him several times if he was with us. Once he
came around, we began to discuss our next steps. The doctor was going to
have him admitted to the hospital to be sure that his blackout was not anything
serious, and to begin testing to confirm or reject his suspicions. I was
all for it, the sooner we could get an accurate diagnosis, the better.
David was far less agreeable. He’d recently had multiple tests and knew
that he was okay and did not need to waste a lot of money on a hospital stay.
After a two-day hospital stay and $5000 out-of-pocket
(hear David grumbling), we spent the next two weeks with
additional appointments to zero in on what was going on with David.
Finally, on September 22, 2011, after a second, excruciatingly painful EMG, the
neurosurgeon gave David a definite diagnosis of ALS after discovering muscle
weakness in three areas. My immediate reaction was anger. David is
just too good a person to be afflicted with such a devastating illness. I
told him that he didn’t deserve this, and then quickly added that no one
So, next came the research. Tell me everything.
After the first few days of researching this disease, I named it “The Disease
of I Don’t Know”. I don’t know what causes it, I don’t know how to
diagnose it, I don’t know how to cure it, I don’t know how long he’ll
live, I don’t know which area of his body will be affected next – I DON’T
KNOW!!!!!. I do know that I cannot think of a worse diagnosis than
this. Gradually, and in no particular order, you lose your ability to
walk, use your arms and hands, eat, talk and finally, breathe. And you
stay alert and sane the entire time!
As I’m sure you can imagine, we were really freaking out! After a month of limited sleep
and drastic weight loss, we began to
settle into what seemed to be, “the beginning of our end”. The anniversary
celebration was really helpful in keeping my mind somewhat together. I so
looked forward to seeing our family and friends. There was never a
question in my mind about continuing with the celebration. And it proved
to be just the extra dose of loving that we needed – it was just too short!
The anniversary celebration was a good way to begin to let
others know what we were facing. It was
so difficult to tell people about this diagnosis. There isn’t much
response that one can give you. I felt
as though I needed to make them feel okay
about this terrible news, rather than them
comforting me. I felt badly about sharing such depressing news. And yet, I
knew that we needed
everyone’s support to ‘walk through this struggle’.
We’ve got to do our part to contribute to research for a cure
for this awful disease. I don’t want anyone that I know or do not know to
ever have to be faced with this difficult journey. I am asking everyone that we know and everyone
that they know to help in some way. We’ve setup this website to enable
you to make
donations to research for a cure.
David ended his
struggle with ALS on Tuesday, July 31, 2012.
Don’t remember David as a victim of ALS.
Remember him as a kind, loving, generous, considerate man. Remember his hearty laugh, his loping,
bow-legged gait. Remember how much he
loved life and took advantage of all that it has to offer. Remember his dedication to his family. Remember his strong work ethic and dedication
to his profession of electrical engineering.
Remember his fondness for scuba diving, snow skiing, jazz festivals and
international travel. Remember his skill on the basketball court in his
youth. And remember that like his
namesake, King David, that he was a man after God’s own heart.