Feeling discouraged is pretty much a “normal” state of affairs for me these days.  Much of that discouragement arises from spending too much time looking back at what I used to be able to do before my ALS and projecting that trajectory into the future.

Some of what I see is physical, especially when I remember what I could do at the gym even a few months ago compared to now, or how far and fast I could walk before the days of canes and scooters.  Or typing with two hands, not just hunt and peck with a stylus.  Or really holding up my end of a conversation, not just nodding and groping for paper and pencil to write a note.  Or a thick rare New York strip steak with a baked potato — and a good red wine, a mature Cab or robust Zinfandel – not 8 ounces of Ensure though my PEG.

That inevitably leads me to comparisons with where I thought I would be at this point in my life — still working and helping to shape government policies; actively engaging with friends to cook and eat elaborate dinners; visiting far-off destinations; taking my two great grandkids on adventures.

From that perspective, as I gaze into my future, the disappointments can become prominent.  Travel to exotic locations that will not occur; new food gone untasted; books unread and movies unseen; opportunities to be of service unfilled.  No more jumping from airplanes – although probably once was enough.  Lots of sitting aside and observing, not participating.

I understand, but cannot easily control, where that kind of negative thinking can lead.  I have (or thought I did) good longevity genes from my family and had expected to live to my nineties, active and engaged all the way.   Letting go of that expectation has been hard.

My mental health depends on keeping a positive attitude – not so easy, but doable if I can remember to stay focused on the task at hand and not allow myself to drift off into cerebral masturbation that brings no pleasure and relief.

Here’s an example.  Last week at the health club I decided to try an exercise I had avoided for a while – planks on a Bosu ball.  So I got myself down on the floor, grabbed the bosu and did two good reps of 30 seconds each.  Pretty good I thought.  Then I simply could not get myself up until I got some help to stand.  When I shared that experience with my wise son Simon he responded that most men my age could not even begin to try or accomplish that plank exercise.  In other words, focus on what I can do, not on what I cannot do.

Thanks Simon.

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11 Responses to Discouragement

  1. Tom Murphy says:

    Yeah I’m with you Stu – it is especially discouraging when the “Can’t Do Anymore” items begin to bury the “Can Do” items. I’m still alive and not feeling discouraged enough to wish I weren’t alive – so it’s been another good day living with ALS. One day at a time …

  2. Dick Katz says:

    You are an amazing mensch!

  3. smilecalm says:

    all get discouraged, it’s natural. aspire not to get caught in discouragement of the past or future. some find balance by concentrating on the act of breathing. conscious, mindful breathing offers moments of joyful dwelling in the present moment.

  4. Joan says:

    You express so well what I, as a PALS, feel also.

  5. Recognise Stu those thoughts which are not helpful …and the the trajectory of thought …we can’t make alright so don’t dwell on it…it will just make you miserable …it’s takes a lot but it can be done with practise Love u xxx hugs and stuff xxx

  6. Cheryl Terio-simon says:

    Stu, I think I understand your feelings of being discouraged. I know I wouldn’t be nearly as strong. I so admire your looking it in the face. Along Simon’s line of thinking, you are wise and articulate way beyond the average bear. You can still turn a phrase. I love the concept of “brain masturbation!”

  7. Paul Fitzgerald says:

    I can only imagine how challenging it is for you to fend off the daily discouragements. But know that continuing to write this blog is ENcouraging for all of us. Peace, Brother

  8. Holly Givens says:

    You have it right… Focus on the things you can do. From what I have heard from ALS doctors, do not expend the energy (in the gym, etc.) on things that don’t matter or on activities that drain your physical energy. Enjoy the moments.

  9. Arnold Moses says:

    Simon is right. Even with my superior strength and stamina I cannot do that stuff.

  10. Dave Karmol says:

    Thanks for this great reminder to live in the present! I often wander into the past, or the future, and find myself either regretting or worrying. Neither feeling is productive.
    I appreciate you taking the time to share your thoughts. Its hard to imagine how difficult it must be to experience ALS, but I really admire your ability to continue to be objective, and to rise above the disease. See you soon, insha allah.

  11. Dick Kennedy says:

    Thanks for sharing your feelings Stu. It helps me begin to understand and enriches my life……and i hope yours, Peace Dick Kennedy

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