Black Sunday

I think I always knew there would be a day like yesterday. It started out fine. Two full days back from our trip and pretty much past the jet lag symptoms. A good night’s sleep. Breakfast was tasty and filling. Headed to the gym for first workout in two weeks – and it felt good to get back into the routine. Made a swing to the market to pick up some goodies.

But somewhere along the line the realization that I was sinking fast hit like a ton of bricks. I think it’s largely about the rapid loss of my speech over the past few weeks. And the difficulty eating – I am starting to lose muscle and weight more rapidly. But those growing weaknesses lead (sometimes quickly) to dark thoughts of just being trapped in this decaying body – fully aware of what is happening and powerless to slow or stop the decay.

I panicked. Blew off Roz and close friends we were scheduled to visit, and just took off to be alone. Drove around aimlessly. Did not want to “talk” to anyone. Didn’t want to spend hours getting food into my body. Didn’t want to keep sopping up the excess saliva leaking from my mouth. Just wanted it to be done.

Fortunately the panic subsided and I was able to have reassuring conversations with Roz and Simon. I know this is hard, and will get harder, but I need to work hard to keep my desperation in check.

I know I have good alternatives for both communicating and getting nutrition. I know that the many family and friends who surround me with love are willing to do whatever is asked of them to help. I know that people are depending on me to continue important work we have begun.

I know this is not yet my time.

So I need to get past these feelings of desperation and concentrate on doing my best for today. I will need your help to stay focused on today. Send me hugs and positive thoughts. Hold me accountable – my disease does not entitle me to a free pass.

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13 Responses to Black Sunday

  1. Tom Murphy says:

    I know exactly how you were feeling my friend – I think that every single day I say the same thing to myself (more than once) … “just want it to be done” … the frustration is mindbending. I also know I am not very pleasant to be around when I am thinking this thought. So I try very hard to PUSH those thoughts away and think of more “helpful” things. Sometimes it works and sometimes it doesn’t — but I don’t stop trying.

  2. Barbara Gems says:

    This kind of day is bound to happen. With your amazing positive attitude, I hope they are few. The beach trip and work on Cornerstones will rejuvenate you. Sending hugs and lots of love your way.

  3. rdg2013 says:

    I know my panicked feeling. Not fun. I’m curious: what happened to make the panic subside – was it something you did, something someone else did, or …?
    For the record, I am inspired by your courage and honesty in the face of this fearsome journey. Thanks for writing it down and sharing it.

    • rakoff says:

      I think what happened was that by identifying the panic I was facing, and giving it a name, I was able to see it for what it was and out it in perspective. That plus loving intervention from my wife and son helped me find a way out from underneath the black cloud. THey helped me see the total picture which is much less negative.

  4. Bob Osterhoudt says:

    When do you want to get together???

  5. Cheryl Terio-simon says:

    Please don’t beat yourself up for being human, Stu. And please remember that this disease doesn’t define you. You have so much intellectual and moral strength to contribute to us all…family, friends, community. I am still holding on to the hug we shared at the farm market Saturday.

  6. Stuart, I am interested in reposting some of your blogs on the MDA/ALS Newsmagazine blog site (see I didn’t see any contact info on your blog page, so I’m hoping you will see this comment and send me an email: Looking forward to hearing from you! Christina Medvescek, MDA VP of Publications

  7. Elizabeth Goldfarb says:

    Stuart, you are so inspiring! Keep up your blogs. They help tons of people and it helps you, too, to vent.
    Hugs from both Ira and Elizabeth

  8. Ok So Far says:

    Thank you for being so open and honest. Some days are just like that and it’s ok. I’ve had times like this too and they scare me. But I’m learning more each day about coping with this hideous disease thanks in no small part to you. Other ALS bloggers too. Wishing you bright days filled with love!
    — Patty

  9. Paul Fitzgerald says:

    Stu – It’s hard to imagine what it’s like to go through all of the things you are experiencing. The memory lapses and aches & pains that I have don’t compare at all. It takes real guts to forge ahead daily with diminished capacity. We bandy about the word “hero”, but in my view you’re a hero to keep going with courage. You’re in my thoughts & prayers daily, Stu. I think of you frequently and offer a prayer that you will be able to manage just for today or just for the moment.
    Looking forward to getting together at OBX, that magical place that somehow brings together heaven & earth. We’re relying on you to find the best spot to have as a gathering place there, but not relying on you to give us the best directions to find it! I’ve got a smile on my face in anticipation of heading for the beach in just a few days, and so today I’m carrying you with me in a joyful spirit, with lots of cheers & love for you. Oh, by the way, Darnell sends his best wishes too.
    Paul Fitz

  10. sending you love and positive uplifting thoughts!

  11. Dear Stuart

    I am so sorry the Internet isn’t really working in our Cornwall House so I couldn’t respond to your email when you needed it … Stuart, I have had days like that … Interestingly I had a day like that on Sunday … The Cornish cliffs felt very appealing !!!
    I guess when you realise that further deteriorating is going on , it a hard place to be … I know that so much !!!! When I get to this place , I try to consider the other people in my life and how the consequence of potential actions might affect them … Sure you are deteriorating but we all are after the age of 30 !!!!

    No seriously , when I met Roz she clearly loves you to bits. and it’s the ones that love you that you have to carry on for ….. You have still a long way to go and this is just the early stages … Just think of managing every day … and the days are very different … On one day you feel that is has to be then end but you have so much function left … You sound like you have a good project going on and you need to complete this … I am relying on you too to be strong … We must be strong together … If you want to write to be direct instead of my blog do …
    Love you and be strong !!!!

  12. Sara says:

    Hi, Stu. I just read your Sunday posting. And today’s. Sunday’s was terrifying, so I was heartened reading today’s. Please know that I think of you every day and wish, hope and pray for caring warmth to encircle you always, every moment. I am incredibly grateful that I have the chance to help you in your dream to make us all Cornerstones.

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