Another Chapter to share with you

Chapter 19

This month I passed my eight-year anniversary since diagnosis. It wasn’t a celebration, but it was a milestone of sorts.  Conventional medicine had me cremated by this time – statistically speaking less than 20% of patients diagnosed with ALS live beyond five years.  I guess I’m special.

I have mixed emotions about this mark of time.  I should be happy that I am still alive – I am.  But, I can’t help but feel frustrated, afraid, sad and depressed at the same time.  I have a wonderful wife and son who love me and care for me each day – they make life worth living.  I have fantastic friends who visit me and help pass the time.  I have good caregivers who are compassionate and skilled. I still use my computer, surfing the Internet, communicating with others, enjoying social media and reading the news.  I have at least 10 books on my Kindle which I plan to slowly read. I watch a lot of television and movies.  Ten years ago when I was working 12 hours a day six days a week I would’ve given my right arm to be able to lay around in bed and watch TV, read or surf the Internet all day.  Now, I would give both arms to be able to go to work!

I am grateful; I have much when others throughout the world have much, much less. I am afraid of what this disease will bring next.  I am afraid of losing my ability to speak and my ability to stay in contact with the world and the ones I love.  I am afraid of the power going out and suffocating – death does not scare me.  It is the process of dying that I am afraid of, and then the grief, guilt and sorrow that my family will have to endure when I am gone; that is unacceptable.  Somehow, I want to protect them from that seemingly inevitable scenario.  I guess I have to keep hanging in there.

That causes worry and anxiety as well.  How long can my wife continue to work full-time, supporting the family financially, and be my primary caregiver?  Burnout seems like it is just a bad cold away.  I also worry about money – how long will my retirement savings last? What will we do when the disability payments stop?

I feel like my existence is perfectly split between the good and bad, the happy and the sad.  How can I live with such dichotomy?  Is this natural? Perhaps Abbey can offer some guidance.

I meditate on the beautiful ceramic pot once again.  I guide my mind through multiple levels of consciousness searching for the monoliths on the pristine slopes of Mauna Kea.  I find them, but Abbey is not there.  I am left to explore on my own.  I don’t feel prepared for this part of the journey.