Up to now I have been fortunate that my symptoms have not included much pain – just occasional twinges. But over the last week or so the pain level has gone up dramatically, especially in my neck and back as those muscles have weakened substantially. The weak muscles make it hard to hold my head up and find a comfortable position, especially when sitting up. I can’t easily hold my head steady, so even as I type this (using a stylus with my right hand) I must stop and stretch after every few words.
Along with the weak neck I have just about lost all ability to swallow and eat even thick purees through my mouth — so no more oatmeal or VitaMix soups. The difficulty with eating is that I now lack the ability to move food (even thick purees) around my mouth and down my esophagus safely. And weak lips means I end up with more on my chin and in my beard than in my stomach. So all my nutrition and hydration now goes through my button.
To deal with the pain I have started taking more heavy-duty drugs regularly. They dull, but do not eliminate, the muscle pain. Massage has helped some, but the effects are temporary. Because of the drug side effects and neck mobility issues I have decided that I am no longer safe to drive. I am so glad I have had my blue convertible these last few months. Turns out losing that independence will not such a big deal for me – I have no trouble getting a ride anywhere I need to go. Those places are more and more limited because moving around or sitting in one position for too long is simply getting to be too uncomfortable. Sticking close to home seems even more desirable now. Not sure how much longer I will be able to enjoy movies or theater out.
If you are now expecting some surprising uplifting learning from these experiences I am afraid I must disappoint you dear reader. There is no upside to these developments – except the likelihood that these changes signal acceleration in my disease progression and an end to the half living that is the curse of ALS. It is hard to hear friends tell me I am looking good when I know I look emaciated and have become largely dysfunctional as a working human being. The question is at what point does the effort and pain of trying to live with at least a modicum of dignity outweigh the value of the love and caring I am able to give and receive from family and friends close to me?
One of my recent gifts to myself is a marvelous new book containing facsimiles of Emily Dickinson’s envelope writings – short scraps of verse and thoughts penned on used envelopes. These lines caught my eye today:
In this short life that only merely lasts an hour
How much – how little – is within our power.