Friday, March 11, 2005

Dead man walking

Many of you won't like the title of this post, but it's been squirming around in my head for some time now, and I really feel the need to let it out. I mean, here I am, diagnosed with a fatal illness, and I'm still walking. I'm still skiing. Still doing many of the things I've been doing all my life. But in the eyes of the medical community anyway, I'm a dead man walking. What an incredibly surreal feeling, almost like I just dreamt the whole ALS thing. Don't I wish.

What's really going on here is part of a somewhat unspoken debate going on within the ALS community. Should a person with ALS go around telling everyone that they're dying? Many say no. That because doctors have no way of telling us how long we have, we should assume we're going to live a long time. In some rare instances, people have lived up to 30 years with the disease. It's the 'your attitude is your altitude' way of dealing with things, wherein if you assume you are going to die, your body will find a way to make it happen. And if you keep a positive outlook, you'll live longer. And we do indeed see examples of this happening all the time, for most every disease out there.

On the other hand there's the medical data, which will invariably tell you that ALS is fatal, with death occurring 2 to 5 years from diagnosis on average. One article I read said that many people die within a year or two. And of course the tone with which such pieces are written is clear: sorry to say son, but you gonna die. So you tell me, how in the hell am I supposed to react to that? I mean, all the positive attitude in the world isn't going to save someone from getting rundown by a speeding bus is it? Some people have said, after reading this journal, that I seem to have a good outlook, that I seem to be dealing with things pretty well. On any given day, I'd like to believe that's the case. But I promised you brutal honesty, so I'm sorry to report that on some days I'm pretty much one wave short of a shipwreck. I'm terrified. I'm sad and depressed. I have serious doubts about having the strength to deal with it all. I feel like I'm about to go mad and I should just give up, give in to reality, lie down on my deathbed and wait for the inevitable.

But that's the irony here isn't it? In our dialogue about fatal disease, in our struggle between hope and acceptance, we seem to so often forget that death is inevitable. For all of us. It's simply a matter of how and when. So it's really a bit naive of us to talk about dying in such exclusionary terms isn't it? So and so has a fatal illness. The rest of us are fine. I mean, in reality, aren't we all 'dead men walking'? I see the pity in some people's eyes and I want to tell them to keep it for themselves. I don't mean that in a negative way. But having to stare down my mortality has caused me to notice how little others seem to acknowledge their own.

I of course mean no disrespect to those that cannot currently or have never be able to actually walk. It's just a metaphor for my situation that I've been brooding over for several months. One that usually gets stuck in my head and gets me down. On those bad days, and every day starts out seeming like it might be, when I look in the mirror and think "You're dying Scott", I hear this little voice in my head say "But not today." And I feel a little better. I just hope I'm not tempting fate by saying that!

Wow. Dear reader, I want to thank you for listening. Writing about this has really lifted a weight off of my shoulders. Today is a good day. Today I feel strong. Today I will NOT let my illness get me down. I will NOT give up on my life. I will fight with everything I have, and I will go to sleep happy and content. Dreaming of the arrival of my little girl. Of my beautiful wife. Of whatever time I am granted with all of you. I will live my life hoping for the best, even while preparing for the worst. There will likely be a day when I am no longer walking. And inevitably a day that I will die. But not today.

1 comment:

keith said...

Scott,

Yes your title of this is negative, but you make many fine points here. However I can just as easily tell you I'm a dead man walking as well. In fact anyone who reads this or posts a blog is a dead man or women. We are all dying and this begins unfortunately at birth. Some however are more mortal than others, but that still doesn't mean a thing as there are "NO" guarantees in life.

As for the medical community it sickens me how they are so quick to write someone off. Many doctors I know quickly dismiss someone as dead based on an assumption that they would not want to live that way themselves. Well guess what... It's not their life to live it's yours. ALS is a crippling, dehabilitating disease, but in my opinion it doesn't kill. It may make you wish you were dead, because it will at some point it will probably take away many of the things you enjoy doing. This all reflects on how well you can accept changes. Big changes, depending on what you are used to. There are many people who have never been able to walk their entire life, or born perhaps blind, yet they are used to this and accept this, and they carry on happy meaningful lives. It's much harder to deal with this when you are used to having something then it goes away. A really good example of this is to take a millionaire or someone fabulously wealthy. Many people in this condition when they lose everything, they want to die and lose their will to live simply over money. Many doctors simply say ALS is terminal, since every doctor they know says that and they were taught in school that ALS is terminal. Based on this they will say that as well all the while there are a lot of long term survivors. I don’t know the exact number, but I will say there are many. I know for myself I was told many things in life only to find out later that my first answer was not exactly true.

Many of us spend our entire lives controlling and changing our surroundings to make our lives as we wish. When a person is no longer able to do that themselves, they often can not deal effectively with their new surroundings. My answer to this is so what? Adjust to the change and move on as best as you can. All this sounds simple enough when I say this, but in doing it. It becomes a lot harder.

Here are some of the most amazing statements I've ever read on ALS:
How do you feel about having ALS? The answer is, not a lot. I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing, which are not that many. - Stephen Hawking
Note: the last part of this in which the author states that it doesn't prevent me from doing much. Here is a person who can't talk, walk, or barely move yet he clearly states his condition doesn't prevent him from doing much.

While I had been in hospital, I had seen a boy I vaguely knew die of leukemia, in the bed opposite me. It had not been a pretty sight. Clearly there were people who were worse off than me. At least my condition didn't make me feel sick. Whenever I feel inclined to be sorry for myself I remember that boy. - Stephen Hawking

We live thinking we will never die; we die thinking we never lived. - Jason Becker

The mind is its own place and can make a heaven of hell or a hell of heaven. - John Milton

So you think your dead? I've never been snow skiing, or traveled hardly out of the state, I have few close friends, never been married, no woman, no children, I work an insane amount of hours, and very seldom do anything fun other than my work. So by that definition who is living a better life? I think you are enjoying things more than me. I hope and PRAY that you can continue to do these and all the things that you enjoy for as long as possible.

I might point that Stephen Hawking has fathered several children, published several books, taught school, visited with Presidents, and many other things all while having ALS.

It concerns me to read some of the things you say here:
On any given day, I'd like to believe that's the case. But I promised you brutal honesty, so I'm sorry to report that on some days I'm pretty much one wave short of a shipwreck. I'm terrified. I'm sad and depressed. I have serious doubts about having the strength to deal with it all. I feel like I'm about to go mad and I should just give up, give in to reality, lie down on my deathbed and wait for the inevitable.

I totally understand this, but here is some brutal honesty back. There are many people who are here reading this with you. Your family, your wife, your loved ones, and many others, and believe me when you hurt they hurt just as much. Think I'm wrong; your condition is great compared to what I saw my grandmother go through. She had a bad stroke. The last eight years of her life was in a nursing home on a feeding tube, she couldn't talk nor even recognize anyone in the room with her. She lost her mind and body; you are only losing your body. That situation with her wasn't pretty, but it made me realize one thing, the worst thing you can lose is you mind. When you look in the mirror and think "You're dying Scott", you are approaching the problem the wrong way. Look in the mirror and thank god for what you currently have, then say I'm going to fight this with all my being, I'm going to see my children grow up, I'm going to their graduations, I'm going to see them get married, I'm going to grow old with my wife, and I'm going to help as many other people as I can. I am going to prove all the naysayers wrong!

Now one last thing before I leave you. ALS is a rare disease. It doesn't get funding for research like cancer and many other ailments. It is a tight-nit community of friends and family of those that have to deal with it though. Lou Gherig himself stated he felt like the luckiest man alive due to the love and support he had with it at the time, and we are going back over 60 years ago. Many others feel like this as well today as they did in Gherigs day. Bear in I'm a researcher myself and I work countless hours. I'm certain if you go by several different medical labs across this country, you will find several other researchers just like me working late and pouring his heart and soul to find a solution a solution to some sort of problem. In this case ALS and this world will be a better place once ALS is gone once and for all. Everyone is pulling and praying for you.

Reasons I believe ALS is not Terminal:
1. Many suffer from dangerous falls
Answer: Be careful and know your limits. When you fall hitting your head can be devastating. I believe this is what happened to Jim "Catfish" Hunter.
2. Choking because of weakness of throat muscles makes it hard to swallow.
Answer: Consider getting a feeding tube
3. Inability to breath.
Answer: Get a trach and go on a respirator, many of the people that get all these things done live 10 years and better. Look at the trend of ALS over 10 year club. All of them pretty much have trach's, respirators, and not to mention a ton of love and support at home. With all this you can't lose.

Ultimate Answer: I'm suspecting with computer technology all of the things mentioned above will become easier to deal with. There is even a new Computer chip technology that will revolutionize those stricken with ALS called braingate. I can foresee a ton of applications for someone in this area. Here are some links to braingate if you are interested in reading.
http://www.cyberkineticsinc.com/content/index.jsp
http://www.wired.com/wired/archive/13.03/brain.html?pg=4
http://www.bugsweeps.com/info/brain_tap.html

Praying, pulling, and supporting both you and your family,
Keith

P.S. I was going to paste a link for you of another 25+ year survivor of ALS. He had a website talking about how ALS was not terminal. He had many techniques describing how to do long term survival. Unfortunately I couldn’t find this link today if I find it I will send to you. I also want to let you know I read everyone of your posts here.