This week marks three years since Rachel and I made our epic trek to New Zealand. I still appreciate the hospitality of Raed and his cool family. They represent all that is great about the country. I also want to put a shout out to a Swedish couple we met at an island cookout. I can't recall their names, but remember talking about their next destination, Australia, where the wife would be incorporating her work into the holiday before they headed home. We also talked about the "Girl With the Dragon Tattoo" trilogy. Something about the scope and tenor of our conversation has led me to believe we would have grown to be great friends had the circumstances been suitable. They likely saw me stumbling around and gathered that I was messed up (yes, even back then). We told them about my condition. I hated doing that. It always felt like an excuse rather than an explanation in those days and I have always hated the awkwardness of the aftermath. They took it with style and grace. I gave them my blog title, thinking of it as just a minor gesture. As it turns out, I believe they follow it to this day. So does Raed. I salute these friends who would be friends in any world circumstance. Salut.
Sunday, September 28, 2014
Monday, September 22, 2014
Family
Weekly, maybe. I've lost some steam lately. I'll try to give you something.
Let me tell you about Sarah and Tim, my daughter and son in law.
Back in the summer of 2011, after the reality of my condition had entered everybody's mainstream, Sarah and Tim footed the bill for a weekend in Orlando (Disneyworld). The whole family, including Rachel and Nick, flew in, us from Peoria, Nick and Rachel from Chicago (I think) and Sarah, Tim, Alex and Isaac from Dallas. We had a blast. The first day I walked from morning to night, ending up so weak that when I sat down on the ground I lacked the strength to get back up without help.
The next morning I could hardly walk at all. We had another long, fun day ahead of us, and I couldn't bear to miss it. I stubbornly hobbled to the bus and through the entrance. After much distress, much crying on my part and Incredible embarrassment it was decided that the only way for me to make it through the day was to rent a geriatric scooter. The young girl who helped us asked which of our youthful clan would be riding. When I stepped forward her her voice became louder and her words came slowly and with hyper-enunciation. Apparently in her mind I was automatically feeble minded and deaf in addition to being feeble afoot. How embarrassed can one get? As the day progressed, my shame waned and I began to accept the situation for what it represented. Still, we all had a blast. One thing I now realize.... It was a precursor to my rising interest in electric propulsion.
Move on down the line a little ways. Talk had already begun about moving to Dallas. We were resistant. Sarah was persistent. They were renting a nice house, but it would not accommodate all of us. We didn't want to force them to move on our account, at which time Sarah said Tim would get a job in Chicago so they would be closer to us. By fall, it became clear that Dallas was more practical for my condition. We were moving south.
Sarah and Tim were left with the unenviable task of finding a house with either an in law's quarters or a wing that would accommodate our needs as well as theirs.
They found the perfect place.
We are all together because of the sacrifice of my family. We are all near each-other because that is what everybody wanted. If not for the efforts of my kids, I would be long gone. I could never be so strong.
Let me tell you about Sarah and Tim, my daughter and son in law.
Back in the summer of 2011, after the reality of my condition had entered everybody's mainstream, Sarah and Tim footed the bill for a weekend in Orlando (Disneyworld). The whole family, including Rachel and Nick, flew in, us from Peoria, Nick and Rachel from Chicago (I think) and Sarah, Tim, Alex and Isaac from Dallas. We had a blast. The first day I walked from morning to night, ending up so weak that when I sat down on the ground I lacked the strength to get back up without help.
The next morning I could hardly walk at all. We had another long, fun day ahead of us, and I couldn't bear to miss it. I stubbornly hobbled to the bus and through the entrance. After much distress, much crying on my part and Incredible embarrassment it was decided that the only way for me to make it through the day was to rent a geriatric scooter. The young girl who helped us asked which of our youthful clan would be riding. When I stepped forward her her voice became louder and her words came slowly and with hyper-enunciation. Apparently in her mind I was automatically feeble minded and deaf in addition to being feeble afoot. How embarrassed can one get? As the day progressed, my shame waned and I began to accept the situation for what it represented. Still, we all had a blast. One thing I now realize.... It was a precursor to my rising interest in electric propulsion.
Move on down the line a little ways. Talk had already begun about moving to Dallas. We were resistant. Sarah was persistent. They were renting a nice house, but it would not accommodate all of us. We didn't want to force them to move on our account, at which time Sarah said Tim would get a job in Chicago so they would be closer to us. By fall, it became clear that Dallas was more practical for my condition. We were moving south.
Sarah and Tim were left with the unenviable task of finding a house with either an in law's quarters or a wing that would accommodate our needs as well as theirs.
They found the perfect place.
We are all together because of the sacrifice of my family. We are all near each-other because that is what everybody wanted. If not for the efforts of my kids, I would be long gone. I could never be so strong.
Wednesday, September 17, 2014
The short of it
Snippets are so much easier than real content. That's why I spend more time on Facebook than my blog. Of course this must change. It will. Tomorrow.
Tuesday, September 9, 2014
Hey do!
When you look back at earlier posts on my blog, you will find many stories about my youth and several about my kids, my wife and the shenanigans we played.
Now I move to the present, where lie the crazy antics of my current living environment. Hang on. It has its whoop-de-doos!
Me, Amy, my daughter Sarah, my son-in-law Tim, my three grandsons Alex, Isaac and Asa and, for a time, Rachel, in one house, yes. This is my view of my life. This is truly the best way to live. It is about sacrifice, chaos, confusion, love, sorrow and family. It is why I live today.
If I were alone to contemplate my past, to ease my soul, to forgive myself and others, to reduce my stress and to regain my composure I would lose it all in an instant if not for the presence of my family.
To say that ALS is emotionally actuated, stress perpetuated and psychologically damaging is only partially correct. While stress and depression can cause physical symptoms, the physical systems can also cause stress and bring on depression. Both sequences are equally damaging. If I'm having a good day and my swallowing becomes labored or my neck becomes problematic or my fasciculations increase, my stress increases. The physical elements of ALS are not merely responses to mental breakdowns but tangible identifiers of neurological malfunction, naturally exacerbated by the stress and depression it generates. The result is a pendulum arcing between physical and psychological distress.
The cure remains uncertain, not completely identified. The pieces of the puzzle are known to all, but all are not attempting to solve the same puzzle. There is no one community of effort. Either/or will never assemble a cure. The answer lies beyond the grasp of individuals. Only a unified and unbiased congregation possesses the tools necessary to crack the case, to find the pieces, to solve the puzzle.
Next post will reveal what a wonderful life I have.
Now I move to the present, where lie the crazy antics of my current living environment. Hang on. It has its whoop-de-doos!
Me, Amy, my daughter Sarah, my son-in-law Tim, my three grandsons Alex, Isaac and Asa and, for a time, Rachel, in one house, yes. This is my view of my life. This is truly the best way to live. It is about sacrifice, chaos, confusion, love, sorrow and family. It is why I live today.
If I were alone to contemplate my past, to ease my soul, to forgive myself and others, to reduce my stress and to regain my composure I would lose it all in an instant if not for the presence of my family.
To say that ALS is emotionally actuated, stress perpetuated and psychologically damaging is only partially correct. While stress and depression can cause physical symptoms, the physical systems can also cause stress and bring on depression. Both sequences are equally damaging. If I'm having a good day and my swallowing becomes labored or my neck becomes problematic or my fasciculations increase, my stress increases. The physical elements of ALS are not merely responses to mental breakdowns but tangible identifiers of neurological malfunction, naturally exacerbated by the stress and depression it generates. The result is a pendulum arcing between physical and psychological distress.
The cure remains uncertain, not completely identified. The pieces of the puzzle are known to all, but all are not attempting to solve the same puzzle. There is no one community of effort. Either/or will never assemble a cure. The answer lies beyond the grasp of individuals. Only a unified and unbiased congregation possesses the tools necessary to crack the case, to find the pieces, to solve the puzzle.
Next post will reveal what a wonderful life I have.
Wednesday, September 3, 2014
Some serious stuff
Before I grant requests for historical imagery from my past life, I want to clarify the complicated nature of ALS and the vague thinking of those who claim to have the blanket solution to all neurological disorders.
It is no coincidence that modern or ancient science has consistently fallen short in efforts to solve the riddle of neuro malfunction of all kinds. The quest to eliminate symptom has failed chiefly because the search for cause has fallen from favor in the medical community due to short term demands for immediate answers. The conclusion of professionals quickly devolves into a non-sequitur of fatal proportion.
To apply a piece of duct tape to a gas leak only solves the temporary problem, as the leak is the result of a source issue not addressed. The dilemma here is that while the duct tape stops the leak the reason and identification is sent to the back burner of scientific investigation.
I'm wary of everything. While I'm interested in nutritional improvement, I don't want to confuse feeling better with getting better. The distinction is enormous in scale.
Visqueen over a leaky roof does not repair the leaks. It only prevents water from penetrating. I don't want to live the rest of my life with a bag over my head.
The solution to ALS is not going to be found through general means. There must be specific answers to the questions yet to be asked. Find the leak. Find the source. Turn off the fucking valve!
No doubt some success will become of the "Shoot at everything" approach, but I prefer a more exact solution. I'm not going to wait around, though. I'm not.
It is no coincidence that modern or ancient science has consistently fallen short in efforts to solve the riddle of neuro malfunction of all kinds. The quest to eliminate symptom has failed chiefly because the search for cause has fallen from favor in the medical community due to short term demands for immediate answers. The conclusion of professionals quickly devolves into a non-sequitur of fatal proportion.
To apply a piece of duct tape to a gas leak only solves the temporary problem, as the leak is the result of a source issue not addressed. The dilemma here is that while the duct tape stops the leak the reason and identification is sent to the back burner of scientific investigation.
I'm wary of everything. While I'm interested in nutritional improvement, I don't want to confuse feeling better with getting better. The distinction is enormous in scale.
Visqueen over a leaky roof does not repair the leaks. It only prevents water from penetrating. I don't want to live the rest of my life with a bag over my head.
The solution to ALS is not going to be found through general means. There must be specific answers to the questions yet to be asked. Find the leak. Find the source. Turn off the fucking valve!
No doubt some success will become of the "Shoot at everything" approach, but I prefer a more exact solution. I'm not going to wait around, though. I'm not.
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