Tuesday, 12 November 2013

3:00 AM

I spilled my coffee this morning; not much of it, just enough to stain my pants and a spot on the wall, just enough to need cleanup on Aisle 6, just enough to make me wonder why. I know that spilling a bit of coffee might not seem like much to most people. I realize it happens to all of us sometimes. I know I could put a bit less in the cup. I know all of these things yet I worry and wonder.

That's part of the real challenge of this disease. You just don't know what is happening or how. You know that something is happening; it always happens. You know that the disease never really goes away, never really stops, even when it slows down. So you live your life in suspicion, in fear, dreading the next thing, the next event, the next step in the process. You live your life waiting.

It happens all the time, this anxious waiting and watching, this fearful expectation. I woke up in the middle of the night last night, worrying about what would happen to me. It happens often. I was unable to get back to sleep as I contemplated the dire financial and physical events that would likely transpire as I move towards the end of my life. It is at times like these that suicide seems a reasonable option. If you think differently, go into a hospital and meet some people who are at the end stage of this dreadful disease.

That end stage is what I think about at 3:00 AM as I lie alone in my bed, flopping my dead legs back and forth as I adjust, trying to will myself back to sleep. Last night it only took about 2 hours to finally get there; the last time I looked at the clock it said 5:00 AM. When I next awoke it said 8:00 AM. The thoughts that I went to sleep with are the thoughts that arose within me on waking.

So I spilled my coffee. So what? If you don't have ALS, you get to dismiss it as any number of things. I have ALS; one thing looms above all others. It takes real work and effort to think of something else. My disease is the largest thing in my life; it has the largest impact on all I do. It is a burden that I bear alone, when I wake up at 3:00 AM and think about things.


  1. Oh my dearest, I feel terrible for you. I too go to sleep with thoughts of what you will be going through and wake up to the same thoughts. I know prayers are useless since I have prayed and nothing makes the difference. Prayers are only a pacifier for the soul. You are so far away and I am useless to you. Nothing to offer but love.

  2. AS I read your blog today,Richard,the tears flowed down my face like rain. I feel pain for you,and also for me.Our choices in life have been st ripped away from us, yours through your illness and mine because of Als death(just noticed when I typed that Al's and ALS is the same, go figure!) We both have very little choices in life and at 3:00 AM and we are alone in our beds , fear , horror, and anxiety wells up inside and it feels like we are chocking on a "fear ball".
    Oh yes we can laugh and joke and share a glass of wine with our friends, while we know they love us , they cant carry this burden for us.
    In my Griefshare group last night we were sharing, we grieve, not just the one you lost, but also our hopes and dreams,of travel of old age,of financial security,of independance.
    My blog, when I get it going is Freida is living her life in depends, because every thing depends on something else. Even do I have enough finanaces for my old age,depends on how long a person lives.With my lymphoma I have been assured by doctor that it will eventually come back, if I dont get hit by a bus first.So I wait, looking for lumps ,bumps(is that a lump, or is it just fat?) But if we have to live our lives in fear then are we really living?I think the thought of suicide has entered each one of our minds at some point or the other,and its very easy to judge when we are not in the circumstance..The night after Al died and I was all alone in our motorhome in Yuma Arizona ,none of my children could come because they didnt have passports,and I was cleaning cupboards to put the MH in storage,I found Als 3 month supply of morphine for his back pain and although I didnt think so much of suicide, I just knew that I didnt want them around in case I did. I took them to the hospital the next morning to have them disposed of because everytime I saw them sitting there, I would think,"It would be so easy!"
    And even now, I know when I do write my blog, my children will not be allowed on it,because if I talk about my real feelings,someonee is racing over to check on me. My daughter, Shannon,got scared one night,called Anita,and had her get up, put on leg braces and come to see if I was ok. I want to feel my feelings and be validated ,not shoulded on for having them. Thank God, not every feeling we have gets acted on!
    And to your mother, Nan, your fears are real and painful.You are his motherand we feel we have to protect our children whether they are 2,10 or 40+ Your prayers are not useless even when we feel it just pacifys the soul, maybe that is what our soul needs.Neither, Nan, are you useless to him.Your love means everything to him I am sure. I cannot understand your pain because I have never walked that road, but I do understand pain, and know there is no magic words to fix it andd the people that help me most is not the one with a lot of words, but the ones that just put their arms around me and cry with me.
    Speaking of lots of words...I go now. Hugs in my heart for you both.