Everyday I live is better than the next one I will see.
This is very true. Every morning I notice that my limbs are a bit less functional than the previous day. My left arm, my strongest, has begun to be unresponsive when I wake up. I am most helpless when I'm in bed. I can no longer roll onto my side without assistance. My arms just get in the way and I have to clutch them to my chest with the small amount of muscle I have left. When I have an itch I literally have to crawl my hand to where I need to scratch. This takes a long, long time. Particularly since my hand is so weak. My legs, primarily my left, have become so weak that I can no longer get myself to a standing position on my own. So, we use a Hoyer lift to get me out of bed. It looks just like an engine lift but instead of chains Dee uses a hammock sling that she places under me. She pumps a hydraulic jack that lifts me up and then she lowers me into my chair. When I'm in my chair, if I'm up high enough, I can slide off my seat and lock my knees to straighten up my torso. Though I often need a push on my chest and rear to help me get righted.
Eventually, some of my function returns to my limbs but there is a minute loss of strength every day. I am ok with it though. I am grateful for what I have today. I don't have the luxury of time or the energy to spend worrying about it at this point in my life. It's useless to worry about something that I have no control over anyway. There is more to be gained enjoying what I have. I would rather sit in my garden and watch the bees fly from flower to flower than dwell on the negative aspects of my life.
I'm not saying that I don't find myself thinking on them at times. Quite the contrary. At various times I fall into states of despair. I have no idea what triggers them and I usually don't realize I'm in a "dark place" until I've been there for a day or so. When I realize I'm in this dark place my mood lightens a bit and I get a bit excited. Because, When I do, I know an epiphany is usually coming soon. When I do come out of it, I am filled with creative thoughts. All of my best poems and every one of my blog posts (other than Europe) have been written right after one of these dark times. I figure that my subconscious needs for me to gain some insight that is hidden in plain sight. It is literally like I'm standing two inches from of an opaque curtain with my peripheral vision blocked (dark place). But then it opens and behind it is an enlightening feeling. It's literally a feeling of pressure in my chest. The only way I can get rid of it is to pour it out in words. Then I feel as light as a bird, happy, full of joy and ready!
Ready for what? I have absolutely no idea but if it's another dark place, bring it on because I know there's reward at the end. A reward that allows me to look at life with new eyes.
I see it like this, before I was diagnosed with ALS I was just a solid block of marble. As my body has begun to break down I see it as a sculptor chiseling on me and with every small piece removed I've gained some insight into my core. Actually, more like insight into the mysteries of life that are sitting there in plain sight. I enjoy every day and I'm happy to still to be here. I do not fear the dark places I have to go. Because everyone of them has giving me ways to cope and to be even more happy when I have passed through them.
When I was first diagnosed, a young college student asked me if I had any keen insights to pass on. At the time, I told him just because you have been diagnosed with a terminal illness doesn't mean you have all the answers. Boy was I wrong! The answers were right there all along and all I had to do is open my eyes and look at them with my mind tilted slightly (A different point of view). Yes, my new point of view came with a terminal diagnosis but it really didn't have to. What I'm trying to say to all of you is, don't wait until you have a life crisis to gain these insights. Life gets in the way and you can't let it. Ultimately, when your time comes, I hope you can look back at how wonderful your life was because you chose to look at the world a little differently and made happiness (both yours and others) your life's work.
5 Comments
Molly Bieshaar
10/15/2013 07:38:38 am
You invited me . . . I would like you to view SermonSpice - Skit Guys - "God's Chisel". www.sermonspice.com
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David Tuthill
10/15/2013 10:55:19 pm
Don,
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Dianne Torres
10/19/2013 03:40:01 pm
Awesome! I will never look at feeling down the same way agsin.
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Kevin Lamb
9/8/2014 02:50:34 pm
Thanks for sharing Don. I must have missed this entry, but I'm blessed to have read it tonight. I'm sending my love to your family through prayers.
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Timothy Young
4/19/2015 04:36:46 pm
Very Wise Words.
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