(Wally earned his master’s degree from Purdue University and was a management consultant and operations manager at multinational corporations. While he has lived in both the US and Israel, he currently lives in Denver. Wally was diagnosed with mild cognitive impairment and has been interviewed on Israeli television several times about his journey with early-stage dementia. He is active in several organizations that focus on this condition and has agreed to share his journey in this blog. This installation is his first, but he also chronicles his experience in his blog TheLivingDyingDuet.com.)
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Knowing~Life Haiku
a haiku: knowing life through death
we can only know
our purpose in this life and
live life in a way
that is true to our
purpose when we fully face
our own death coming
Being 70 years old is for old people. Being diagnosed with early-stage dementia is for brain-falling-apart people. Needing help in living my life is for un-functioning people.
None of these had anything to do with me. None of them had anything to do with me until that day in October 2022 when the neurologist looked at the test results and told me that I have early-stage dementia. I thought that’s the worst news I would get, and it was, until January 2024 when the neurologist told me I also have Parkinson’s disease (PD).
PD has a bigger effect on my day-to-day life. I had figured out how to deal with forgetting so much because of the dementia, but with the PD, I physically couldn’t function as I had. I lost the practical use of my left hand in many ways — manual effort became a fingers-of-the-right-hand activity, and I didn’t dare pick things up since they would drop because of the shaking. Large physical limitations were added to the mental limitations, and the future looked very bleak from there.
What happened next couldn’t have happened without having first gone through these things. What happened was at first tiny and was completely overwhelmed by the terrible limitations that had come into my life, and it was just a feeling. It was a tiny feeling that oh-so-slowly started to take place in my life. And that’s exactly what it was — feeling.
As the brain-driven life I had lived up to then was reduced — as I went through mild cognitive impairment (MCI), to use the common phrase — there was room opened for something else besides the cognitive. That “something else” was feeling, and in a way I had never experienced before. The more I paid attention to it, the more it was there, and the more I felt happy that it was there.
I looked around and couldn’t find this described anywhere, so I made up a name for it, mild emotional enhancement (MEE), and created a web page describing it particularly as related to MCI. [That site is mciandmee.com.] And the flow continued. I kept hearing about mindfulness, and I felt something was missing there, too, so I created feelingfulness.com to go with it.
Let’s put words like these in our language and start feeling them and using them, and who knows where it will lead! I know where dementia leads, and as I’m on my way there, I want this approach to be available to me, so I invented I-Have-Now.com, which says that my life and my death are part of each other as the dementia advances. And for me expressing it, even on a T-shirt (see photo above), is part of feeling it.
I feel that a word that expresses what I’m going through is “release,” and that it’s important to me to explore this more. Actually, now that I realize that I’m on my way to the final exit, I feel that there is very much to explore here — I’ve been on the way since the moment I was born and didn’t realize it at all. We’re all here, and the world feels completely different when we realize that fact.
Let’s explore it together — I’ll tell you what I feel along the way on my journey, and I welcome your feelings as you are on yours.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
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In 2013, when I was 71, I asked 23andMe to research my family history, and I included swabs for a genetic analysis. The family history was interesting, but the genetic profile changed my life: My Apoe4/4 gene combo said I was as much as 10x likely to develop Alzheimers Disease as someone with a 3/3 allele combo. I received this news as an active Volunteer Ombudsman at Assisted-Living facilities which included “memory units”, where I was in weekly contact with residents going through dementia. A very healthy lifestyle over the past 50+ years had kept me symptom-free, but in the last five years I have lost my sense of smell and taste, and my memory loss is becoming a problem. With many years of exposure to dementia in my volunteer work, I am determined to avoid the end of life I feel certain I will face. Thank you for all of the information that will help me through this.
FC
Thanks! This all looks like fun.
Wally’s post makes me think about my “everything is fine, until it is not” category. Big “life happens” events pile on a bit as one moves closer to death. I appreciate his reminder as to the power of words in supporting ourselves and how we converse with others about our feelings. And I usually don’t buy into diagnosing of any kind…but I am hoping for a good case of MEE!
Thank you Wally, for continuing your good work sharing your experiences with cognitive decline and pointing out that you are noticing (and appreciating) an awakening of creative emotions along side a decline in your characteristic thinking side of your brain. Emotions too, and creativity, are also part of your brain – maybe a little deeper than “just the facts.” I’m glad you are able to explore and celebrate it.
Bev Thorn