CALS in Recovery: Life Four Years On

It's been four years since my PALS Krissy passed. That was the hardest physical work I've ever done. Caring for a paralyzed person for months is a full time 24/7 job full of life-threatening surprises. It was REALLY tiring. I sometimes fell asleep in traffic. Of course, now I think of Krissy all the time. During the first few weeks, I cried or teared up at night. Now I think mainly of the good times. There are no more tears. Just smiles. So here's what happened after it was all over: The kids (then 13 and 15) seemed to take it fairly well. For the first semester, they went to school most days, and their grades slipped understandably. I encouraged them but did not pressure them. My workplace was very understanding and gave me time off for the funeral, etc. Unfortunately, the fallen grades affected my children's college acceptance. I should have told their teachers about the death of their mother. My kids lost their chance at big name schools. At work, I easily became angry over mistakes made by others. So I was effectively demoted until one day I simply walked in and suddenly quit. I should have appealed to HR for a transfer to a different office, instead. Now I'm unemployed/retired when I could be working. We moved houses to get rid of the memories. Unfortunately, the move put us into another school district and my daughter's grades and extracurricular activities suffered again. The best decision I made during the ALS ordeal was I increased my wife's life insurance to a half-million dollars, so we're doing OK. I'm alone. I have no local friends, nearby family, workmates or classmates and I'm not a joiner or an extrovert, so I'm alone except for my kids, and my boy has moved out for college. My girl has a job and is about to move out for college. To get human interaction, I've been eating out for every meal three times a day every day of the year. I gained weight and it's really expensive. My PALS cremation ashes were on the mantle over the fireplace for three years, but I've decided it's time to focus on happier times, so I moved them to a less auspicious place. I've been on several lunch dates, thanks to eHarmony's matching service on the Internet. Not great matches, though, because I'm not attracted to women my age, and my PALS--a world traveling doctor--set the bar really high. Even before ALS I was easily irritated and moody, so I continue to take an anti-depressant. Thank God. I tried school again, going for a second masters, but I was really put off by sitting in class with youngsters. Starting a PhD at age 60 seems silly; I'd be dead by graduation day! Besides, I have two college educations to pay for with my kids. Financially, we're doing well with a combination of Social Security Survivor's Benefits, Veterans Survivor's Benefits, my military pension and the insurance money. We've taken some great vacations to Italy, France, and England. Still, I'd like to have something to do to contribute to the world. I started writing a book about our experiences with ALS, but since I have no knowledge of PEGS or vents, I decided I'm not qualified. Too bad; the first draft I started had some promise. I'm happy enough, but once my kids are gone, it will be like I'm in a sensory deprivation bubble--no inputs from the outside world. For most CALS, this is probably not a problem, as most people are extroverted or working with others. So there it is. A mixed message. There is a life after ALS. My particular situation may be a bit emotionally challenging, but we all have our problems. Life goes on. I think of Krissy often during every day. She brings a smile to my face. Occasionally, but rarely, I write down a memory as though someone will be interested in reading about us.


affected's picture

Mike I would suggest the book you could write would be even more valuable BECAUSE Krissy chose no peg or vent!

Consider writing, I think that stories of personal experience are incredibly important.

Love you update, so honest and inspiring xxx

Colawoman's picture

Keep working thru the eHarmony ladies, that's how I met my sweet huggy bear - we've been married a little over 5 years!

Barbie's picture

oh mike, I don't know what to say. keep trying the dating thing--may have to sort thru a lot until you find someone special. it is ruff when those kids move out, of course, for a while mine have come and gone. really think about getting some kind of a job, even part time or volunteer, just to get you out and in the mix. I know you aren't an extrovert or joiner, but maybe you will have to push that envelope too and try something. just one thing at a time. .. I am proud of you Mike, just because of everything about you!

ts24206's picture

I am new to the forum and reading the few post I think you should write a book. My husband has made a decision for no assistance with breathing at all. He is doing an inhaler and we are starting a neb this weekend. I felt better reading your post with his decision. In the last couple of weeks he is getting weaker sleeping more. Thank you for continuing to post on the forum your knowledge, experiences and honesty are refreshing and very helpful to me and I am sure to many others

BridgetStahl's picture

I think the book is a great idea. My husband is on a peg, but one thing I've learned through this journey is that there is absolutely not a single path for ALS patients. My husband can move only his neck a small amount (and his eyes), but his oxygen is still at 93% (4 years since first symptoms). Others I have met are on bi-pap within months. I think for CALS, the more important thing is what we all share, not the specific indignities that your PALS has to endure.

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