MY EXPERIENCE
The experience of living with the disease has become more challenging than I would have imagined mostly due to life circumstances. There are times it becomes difficult to find positives although there ARE some. Here are my thoughts:
During best days I look at ALS like any other health condition - that for some reason something just isn't working right, that's it - not a punishment or payback for something done in another life, like many other people I got dealt a crappy hand of cards. Accepting the disability can be immensely difficult as well as avoiding taking it personally - that is really hard.
During best days I look at ALS like any other health condition - that for some reason something just isn't working right, that's it - not a punishment or payback for something done in another life, like many other people I got dealt a crappy hand of cards. Accepting the disability can be immensely difficult as well as avoiding taking it personally - that is really hard.
Yellowstone National Park - July, 2016
I worked in mental health for many years and now I'm on the other side of the table, life is about breathing in and out and reaching out for help is a reminder that the clients I worked with taught me more than I taught them - how did you get through the depression and what helped the most? Those questions were answered and I listened.
This video was shot in January, 2014 - 1 1/2 years before diagnosis. There was no pain, numbness or tingling, I wasn't aware anything was wrong until I found the clip.
Stepping away and looking at the big picture has provided an opportunity to be less attached to the disease bringing more clarity and control. And surrender can be a good thing - just like the first step of 12-step programs it's that strange paradox that the more you admit powerlessness the more powerful you become, and the first step could be re-written as, 'We admitted we were powerless over ALS - that our lives had become unmanageable"
Smokey Mountains
There are pros and cons of fast progression vs. slow progression although one of pros was that London and Paris were on the bucket list and I was able to do them two months after diagnosis. My guess is that one of the reasons people fear death is that a purpose hasn't yet been fulfilled, so my suggestion is this: Do what you want to do and find meaning in life, tap into your skills, passions and values. Everyone will have their day although how they chose to go is what matters, avoided bitterness is my priority which begs the question - what's life all about, anyways? And during the very best days it's a challenge unlike any other - an opportunity to fight like you've never fought before.
I value open-mindedness and by asking questions like, "Why me?“ (DON'T say 'why not you?' because if you do...well...you'll be right) and "Is there a God? Am I being sacrificed to create more awareness for the disease?" Those questions have challenged my beliefs and provided an opportunity to look at the situation from a different perspective and learn.
I have noticed that subtle differences make a huge impact. For example, when diagnosed I was most afraid of a power wheelchair. Now that I have one, my red jacket is on the back making the chair easier to look at, and the grieving of the loss of function becomes less intense because the past merged with the present. Then there are the emotional and practical parts - emotionally it's gut wrenching but practically it's just easier to get around. So I see tension between the two although both are important to address
I value open-mindedness and by asking questions like, "Why me?“ (DON'T say 'why not you?' because if you do...well...you'll be right) and "Is there a God? Am I being sacrificed to create more awareness for the disease?" Those questions have challenged my beliefs and provided an opportunity to look at the situation from a different perspective and learn.
I have noticed that subtle differences make a huge impact. For example, when diagnosed I was most afraid of a power wheelchair. Now that I have one, my red jacket is on the back making the chair easier to look at, and the grieving of the loss of function becomes less intense because the past merged with the present. Then there are the emotional and practical parts - emotionally it's gut wrenching but practically it's just easier to get around. So I see tension between the two although both are important to address
September, 2017
Speaking of fearless talks, Terri Bishop (she agreed to this post) and I have known each other through the last year and even though we've never met we've spent hours talking over the phone - she lives in Truro, Nova Scotia. I share an imagination: Terri and I one day get well and meet in person and I give her a hug to celebrate our friendship. Deal? And Terri: as a retired teacher your best days of teaching may still be ahead of you - you went to Japan to get the first drug approved by the FDA in 22 years for ALS? (edaravone). How did you feel when you got back to Japan and what motivated you to go? What's it like it like for you talking to someone else who has ALS? That's part of the story alright and people will want to hear the life lessons learned because everyone who hears your experience benefits in some way.
Here she is in Japan a few months ago with her husband and the doctor who did the infusion, a file detailing her family's experience obtaining edaravone, and the response to 'what's it like talking to someone else with ALS':
Here she is in Japan a few months ago with her husband and the doctor who did the infusion, a file detailing her family's experience obtaining edaravone, and the response to 'what's it like talking to someone else with ALS':
| we_are_a_family_living_with_als_in_nova_scotia.docx |
| mind_to_mind_connections.docx |