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Groundhog Day

Lord knows that, if I wanted to, I could write countless blogs about the perils of ALS and nothing else. Being and staying positive during this journey is a struggle, but lately my biggest struggle has been the fact that each day is basically the same as the day before. The monotony is driving me up the wall. It reminds me of the movie Groundhog Day with Bill Murray. In that movie, he wakes up and relives Groundhog Day over and over again.

In summary, here is my day. My wife, Susan, gets me up at 7 am to go to the bathroom and then I lay back in bed for a tube feeding. Then, the family leaves for the day and I lay in bed until my nurse’s aid arrives. She helps me out of bed and then shaves my face, brushes my teeth, showers me, and gets me dressed for the day. Then, I go sit in my recliner. My aid leaves and I watch television until my helper arrives around noon. Then it’s tube feeding number two. I either sit in my chair or lay in bed depending on my energy or comfort level. If it is nice, I can sit outside in my electric chair for a while, which is awesome. My help leaves around 4 pm or 5 pm, and then the kids get home from school and they have a sitter to help them until Susan gets home from work, which isn’t until around 7 pm. Then it’s tube feeding number three. By 8:30 pm, I’m given my evening medications and am in bed by around 9 pm. I watch a little television and fall asleep. Every day is almost exactly the same, over and over and over again.

Now I know why I loved my sales career: because every day was different. I never dealt with the monotony of a desk job or as a factory worker, etc. And every morning when I wake up, I am reminded of what my dear friend Trickett said, which is that today is the strongest I will ever be for the rest of my life (from a physical perspective). As you know, ALS does not affect the brain. But what I’m finding out is that as bad as the physical challenges are, for me, the mental challenge seems to be worse.

What is my purpose? What is my value? I feel like such a burden. Maybe life will be easier for my loved ones once I’m gone. These are just some of the ugly thoughts that go on in my head. Usually, I get through them, but I have way too much time to think myself into a bad funk. So whatever others or I can do to break up my own personal Groundhog Day, the better. Thank goodness summer has arrived. Just getting out of the house to smell the fresh air is enough to break up the monotony of my otherwise similar day.

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12 responses to “Groundhog Day

  1. christy robinson ⋅

    Bless your heart Jim. I bet things do seem to replay over and over. Sometimes it feels like that for all of us, even us without the disease. It must be a blessing to get outside and to wait daily for your children and wife to return from school and work to hear the news of the day. It is surely a blessing for them to see you daily as well. No matter how trivial, it must make them feel a calm to know even though in a weakened state, you are still with them. I wish you many more days.

  2. Lynne Olejniczak ⋅

    Jim words can’t express to you what my little brother went through. So thanks for helping me understand. LYNNE

  3. Roger Olson ⋅

    We can only guess the impact that we have but be assured it is greater than you can comprehend in your case. Each thought, each word, each moment is a gift to others. Each moment is one more chance to teach and prepare others for the great circle of life. Treasuring your thoughts and blogs!

  4. Deena Verrette ⋅

    Think about you all the time.all our luv to you

  5. Deena Verrette ⋅

    All ou luv to you think about you all the time

  6. Liz Y ⋅

    Please don’t ever think life would be easier without you for your family.
    My mom died in September from bulbar onset ALS. She battled for 17 hard months.
    I miss her every moment of every day. I’d give everything just to have another hour with her. I can only imagine how difficult your life is, but from a family’s perspective please know they would rather have you with them.

  7. Renee Freeman ⋅

    Hi Jim,

    If my days were mine to give, I would share and give to you some of the days that I often take for granted. You are the bravest, most wonderful, grateful human being that I have ever known. Thank you for sharing your story and your perspective. Hugs. Renee Freeman

  8. alicew627@gmail.com ⋅

    Hanging tough is what you do everyday and setting an example for all who spend time with you … young old and in between! Your family and friends are blessed for every day they can share with you and I know from speaking and seeing you with them they never see you as a burden … you are the rock holding things together. And by the way, never fear, Gary and I will be there in a week … we create chaos were ever we go … you’re in for an afternoon or more of this when we’re there … so as they say, “Hang on to your hat!” Trouble is a coming! Love you big guy!!!

  9. Aimee

    Jim, I am in tears reading this. Twice now, we’ve been close to your house, but I thought it would be an imposition to just drop in. Now, I wish I had, if even for five minutes, just to add a bit of surprise to your day.
    I cannot imagine how you must feel at this point, but you are a person of great value and inspiration to so many. Don’t give up hope, and bask in the sunshine of His love and care for you each day. Love, love, love, Aimee

  10. Dinah Stokes ⋅

    Dear Jim, I have been following your sad story ever since Drew told me about you. My love and prayers go out to you and your family for strength and courage as you all go through this terribly difficult time. Drew’s mom, Dinah

  11. John Boler ⋅

    Hey Buddy, I can’t imagine going through what you are dealing with. Every day I think about you and always remind myself of how you are and have inspired me … and so many other people. I hope we can get together soon to enjoy the summer. – JB

  12. Carole Ann Coombes ⋅

    Hi Jim– I hope you received my response.  My husband had ALS–passed away Dec. 31, 2000.  You continue to be in my thoughts and prayers as you live with honor and dignity.

    Carole Coombes   From: Jim’s Journey with ALS To: caroleanncoombes@yahoo.com Sent: Monday, June 15, 2015 3:07 PM Subject: [New post] Groundhog Day #yiv4759506628 a:hover {color:red;}#yiv4759506628 a {text-decoration:none;color:#0088cc;}#yiv4759506628 a.yiv4759506628primaryactionlink:link, #yiv4759506628 a.yiv4759506628primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv4759506628 a.yiv4759506628primaryactionlink:hover, #yiv4759506628 a.yiv4759506628primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv4759506628 WordPress.com | Jim’s Journey with ALS posted: “Lord knows that, if I wanted to, I could write countless blogs about the perils of ALS and nothing else. Being and staying positive during this journey is a struggle, but lately my biggest struggle has been the fact that each day is basically the same as ” | |

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