Laura asked me to be real and describe what is going on in my mind. I just don't have the constitution to talk, think or write about what is happening to me. Every time I think about it, I absolutely breakdown in tears; and anger completely engulfs me. I don't want to write about it or even think about it!
Laura encouraged me to push through the pain and write. “Why?" I asked her. The response, “It will change the people who read it." I do not know if she is correct; nonetheless, here we go.
Laura made this request with some hesitation, thinking the process would be too emotional. I have created several mechanisms to combat my feelings. All of them end with a common conclusion: another chapter will start soon and anything temporary is tolerable. There are rules that help me maintain my composure.
Laura encouraged me to push through the pain and write. “Why?" I asked her. The response, “It will change the people who read it." I do not know if she is correct; nonetheless, here we go.
Laura made this request with some hesitation, thinking the process would be too emotional. I have created several mechanisms to combat my feelings. All of them end with a common conclusion: another chapter will start soon and anything temporary is tolerable. There are rules that help me maintain my composure.
- No lamenting over the situation I am in
- No asking “why me?”
- Accept where I am right now
- No anger
- No imagining what is going to be
- Finally, trusting God with this journey
I type this post as I sit in my power chair which is one of four places I can sit - bed, power chair, toilet and shower chair. That fact is so frustrating. Laura and I designed our home for entertainment. I can't access any of it.
We moved to the beautiful northwest in 2010. Laura and I love wine and when we got here, we enjoyed visiting wineries. Dinner was smoked salmon on crackers with jalapeño jelly, some fabulous cheese and fruit complemented by a merlot.
We would enjoy this feast on our deck or in front of a fire in the family room. We would talk about anything and everything. That is just one scenario of many, but who the cares? ALS has robbed us of all such experiences.
We moved to the beautiful northwest in 2010. Laura and I love wine and when we got here, we enjoyed visiting wineries. Dinner was smoked salmon on crackers with jalapeño jelly, some fabulous cheese and fruit complemented by a merlot.
We would enjoy this feast on our deck or in front of a fire in the family room. We would talk about anything and everything. That is just one scenario of many, but who the cares? ALS has robbed us of all such experiences.
My motto was: I haven't met a giant I can't slay!
Let me introduce you to A.L.S., the giant whose boot is on my throat. This killer is relentless and it quietly takes small pieces of me day after day. It wears me out.
My motto now is: Ah, ah, ah, ah, staying alive, staying alive.
When I voice my deep sense of loss, I am quickly reminded of all the people I am helping. Also about everything that ALS has given me, like the new people who have entered my life.
While that may be true and does assuage me - those truths vaporize quickly when I have to ask someone to take me to the bathroom; or suction my mouth for saliva and phlegm because my body is unable to swallow; or ask someone to move me because I am paralyzed and not moving makes everything hurt; or I have an itch.
I have to prioritize these requests. Why prioritize? Because my caregivers are human too, which means they have a limit as well and I have to be careful how demanding I appear.
Let me introduce you to A.L.S., the giant whose boot is on my throat. This killer is relentless and it quietly takes small pieces of me day after day. It wears me out.
My motto now is: Ah, ah, ah, ah, staying alive, staying alive.
When I voice my deep sense of loss, I am quickly reminded of all the people I am helping. Also about everything that ALS has given me, like the new people who have entered my life.
While that may be true and does assuage me - those truths vaporize quickly when I have to ask someone to take me to the bathroom; or suction my mouth for saliva and phlegm because my body is unable to swallow; or ask someone to move me because I am paralyzed and not moving makes everything hurt; or I have an itch.
I have to prioritize these requests. Why prioritize? Because my caregivers are human too, which means they have a limit as well and I have to be careful how demanding I appear.
Aside from the personal loss with which I am suffering, it is nothing compared to the loss my family is experiencing. Our family dynamic is entertaining to say the least.
Anytime we were together you could count on laughter being present. We still laugh but now I am a spectator. Everyone does a great job of including me but it is impossible to rattle off one liners when it takes me an eternity to get two words out.
No matter how much we try to ignore reality, the elephant is still in the room. Oh, the tears shed over what might have been instead of what is.
That sentiment leads me to tell how I keep moving forward in spite of circumstances. I wish I could say it is positive thinking or faith or that “never quit” attitude I have displayed all my life. The plain truth is I just deal with now.
I keep asking myself, can I tolerate what is happening right now?
Life boils down to: now!
Anytime we were together you could count on laughter being present. We still laugh but now I am a spectator. Everyone does a great job of including me but it is impossible to rattle off one liners when it takes me an eternity to get two words out.
No matter how much we try to ignore reality, the elephant is still in the room. Oh, the tears shed over what might have been instead of what is.
That sentiment leads me to tell how I keep moving forward in spite of circumstances. I wish I could say it is positive thinking or faith or that “never quit” attitude I have displayed all my life. The plain truth is I just deal with now.
I keep asking myself, can I tolerate what is happening right now?
Life boils down to: now!
That is how I move from crisis to crisis, my strategy to survive. The challenge is the times when I’m not in the middle of a crisis. The trick to stave off insanity is to always have plans for something in the near future, something I am looking forward to. It doesn't have to be big, actually it's better if it is small.
Why small? Here is the wisdom, because speaking for myself, if I need big plans to keep me going, I will miss life's small pleasures. I look forward to a visit, or Corinne recapping her day, or Ashley sharing her latest idea, perhaps Jordan telling me about the drama in her life or a show I can watch with someone. Something small, apparently ALS has taught me to find joy in everyday things.
Why small? Here is the wisdom, because speaking for myself, if I need big plans to keep me going, I will miss life's small pleasures. I look forward to a visit, or Corinne recapping her day, or Ashley sharing her latest idea, perhaps Jordan telling me about the drama in her life or a show I can watch with someone. Something small, apparently ALS has taught me to find joy in everyday things.
The raw truth after fighting for five years is: I am tired.
Tired of playing mind games for survival.
Tired of asking people for basic needs.
Tired of the pain.
Tired of hoping for a miracle of healing.
Just tired.
The most difficult question I wrestle with is - Do I want to take my life? I don't want to die, but I don't want to continue to live like this. Nobody is able to show me the light.
This song captures where I am right now.
Man in the Wilderness by Styx
Another year has passed me by
Still I look at myself and cry
What kind of man have I become?
All of the years I've spent in search of myself
And I'm still in the dark
'Cause I can't seem to find the light alone
Sometimes I feel like a man in the wilderness
I'm a lonely soldier off to war
Sent away to die, never quite knowing why
Sometimes it makes no sense at all
Makes no sense at all
Ten thousand people look my way
But they can't see the way that I feel
Man in the Wilderness by Styx
Another year has passed me by
Still I look at myself and cry
What kind of man have I become?
All of the years I've spent in search of myself
And I'm still in the dark
'Cause I can't seem to find the light alone
Sometimes I feel like a man in the wilderness
I'm a lonely soldier off to war
Sent away to die, never quite knowing why
Sometimes it makes no sense at all
Makes no sense at all
Ten thousand people look my way
But they can't see the way that I feel
Let me conclude with pure honesty. I sincerely hope I am helping you. Being this transparent is hard for me. It took me five days to write and rewrite this post because self-examination IS NOT EASY. Please help me by sharing how the raw truth helps you or anyone who reads my intimate struggles.
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