On a Serious Note:: Living with ALS

The Taite Gallery is generally a light headed blog that takes a humorous outlook at everyday life. Over the six months that have passed since I started the blog, I have had moments when I doubted the project. Lack of response is part and parcel of every new blogger’s world. However, I never thought for a moment of giving up. My mother had always wanted to be a writer and it is from her that I get the push that keeps me going. Though she died before I even started on the project, I am sure she is up there somewhere smiling at the jokes.

Today would have been my mother’s birthday. According to her reckoning she would have been thirty eight. She stopped aging at thirty eight, believing you are only as old as you say you are. Twenty months ago my mother died of ALS. When first diagnosed, the doctors gave her three to four months. She managed to survive for three years, if survive is what you can call it. My mother was scared sick of contracting a fatal disease. Her mother died thinking she was a tailor who once lived in Japan (she didn’t) and my mother was haunted by the thought of experiencing a similar fate. Unfortunately she wasn’t so lucky.

ALS is probably the worst disease known to man. It has no cure and each patient’s experience is different. It generally hits young adults but there are plenty of exceptions. No two people suffer in the same way but the symptoms are generally similar.
ALS attacks the muscles that allow us to function. Within a relatively short period of time, which differs from patient to patient, they lose to ability to eat, speak, move and communicate. Not being able to communicate is the most frightening part of the disease. One time my mother grunted and cried for an hour while we tried to understand what she wanted. Eventually, via elimination, we realized she wanted a handkerchief. Simple everyday needs are suddenly traumatic. Imagine being trapped inside a body with only the use of your brain. You see and hear everything but are frozen, trapped. What could be worse?
ALS is a rare disease. On the one hand we should count our blessings for that. But, because of the relative rareness of the disease there is little incentive for the drug companies to research a cure. In the long run it all comes down to P&L.; When my mother first contracted ALS, my sister and I went to a support group, mostly run by volunteers who had recently lost their love ones. Two participants made an enormous impression on us. The first was a young guy in his twenties who lectured the group. He had recently graduated from Harvard, and to all intents and purposes had the appearance of an upcoming world leader. He stood up strong and confident, hiding the affects ALS were having on him. He went on talk shows, badgered pharmaceutical giants and campaigned politicians. He would have made a great President. The other man was a mountain climber who used his climbing gear instead of crutches. He was very bitter, he had a right to be. God had taken away his ability to stand up. Both these men were in my mind heroes. They fought with all their might against an enemy who held all the cards and a spare pack besides. Though both, in the end were defeated along with almost every other person who has contracted the disease, they opened a window of hope.
ALS has no cure yet. Through the efforts of men such as these the world is slowly becoming aware of its existence. Maybe in a decade from now there will be a vaccine that will put it on the shelf with diseases of the past such as polio that no longer cause such a threat. My mother was a good person, some say a great person, who didn’t deserve such a terrible fate. I recently became aware that a good friend of mine had also contracted the disease. They unsuccessfully tried some experimental treatment on him with zero results. Knowing, from experience, how his future will unfold is heartbreaking.

They put you in a crystal cage
And threw away the key.
They fed you liquid through a pipe
And stole your dignity.
The angels tried to plead your case
But no one seemed to care
While all that remained of the person we loved
Was the long eternal stare.

It’s hard for me to even think
Of the sufffering you went through.
Your eyes could see, your brain could think
As your desperation grew.
It seemed impossible to help you
A fact so hard to take.
As the years pass by, I wonder why
You deserved such a tragic fate.

For more information on ALS visit the ALS Association Site