Managing the give & take of life: Meet @ray666

JOHN: What brought you to Mayo Clinic Connect? 

@ray666: I can't recall a time when I didn't know of Mayo Clinic. Mayo Clinic's website is my go-to online resource when I’m need of sound medical advice. As I aged (I'm 78 today) and began to develop an aging man's many aches and pains––in my case, chiefly arthritic pain, but I already showed signs of having balance and walking problems––I found myself returning more and more often to Mayo Clinic's main website. I hadn't yet discovered Mayo Clinic Connect nor seen a neurologist to receive a diagnosis of anything vaguely neuropathic. 

At Mayo Clinic Connect, I would frequent forums such as Chronic Pain and Spine Health in those early days. Then, in the summer of 2022, when I posted to tell others I had just received a diagnosis of idiopathic sensory-motor peripheral neuropathy, a member of one of those other Connect forums wisely directed me to the Neuropathy support group. I've been on the Neuropathy forum almost exclusively ever since.

JOHN: What motivates you to take part in Mayo Clinic Connect and makes you feel comfortable to share and to be open with the community?

@ray666: The people! And the rich give and take. There's something about a group of people contending with a common enemy. Even though our peripheral neuropathy (PN) comes in dozens of shapes and flavors, something is essentially the "same" about our experience. That's a bonding quality. I feel a "we're all in this together" feeling every time I'm in the forum. 

That bonding quality makes it comfortable. That's why I'm okay with telling anyone most anything about my life and knowing that, in most every instance, other members will do the same. The forum is a bit of a "campfire" experience: Everyone opens up. Honesty flows freely.

JOHN: What groups do you participate in?

@ray666: At the moment, only the Neuropathy support group. Because I also have cervical stenosis (diagnosed as "borderline"), I frequently visited the Spine Health support group. Because I also have arthritis here, there, and everywhere , I once posted and read on the Chronic Pain support group. And, because I'm in the second half of my 70s, I also hung around the Aging Well support group because … well, in the second half of your 70s, just because! LOL

JOHN: Tell us about a meaningful moment on Mayo Clinic Connect.

@ray666: I like adding lifestyle topics in the Neuropathy support group. I'm as interested as the next person in medications and therapies, but I'm especially interested in how people with PN manage their lives. For example, I posed a two-part question only the other day: Are there ways in which PN has given you "gifts" (i.e., encouraged you to slow down and smell the coffee)?

Also, are there ways you've found your PN to be too available as an excuse (i.e., caused you to say no to opportunities because you had convinced yourself your PN insists you recoil from things that––with appropriate caution––you really could do)?

Occasionally, I'll earn a "meaningful moment" when someone posts a reply to one of my lifestyle questions to say, "Thank you. That meant a lot to me."

JOHN: What energizes you, or how do you find balance in your life?

@ray666: Every day, I work to counter what I call my "Wicked Trifecta": (1) growing old with PN, (2) increasing loneliness, and (3) losing a sense of purpose. I exercise to quell concerns about growing old with PN. I phone two or three friends to check increasing loneliness. And I renew my commitment to my writing, vowing to send out two or three stories every month, not to get paid or even to publish but instead to rest easy that I am still participating in the Big World Out There. If I can say at the end of the day, I did some things to counter my wicked trifecta, I'll end the day feeling energized.

JOHN: Tell us about your favorite pastime or activity.

@ray666: My favorite pastime is acting, at least until my PN became too much of a distraction. The last play I did was just before Covid came on the scene. Because my balance had become worrisome, I did two things I'd never done before: I requested handrails alongside any stairs on our set, and I asked the actress with whom I shared most of my scenes if she would keep an eye on me should I show signs of losing my balance. I'd never done either of those things before. My PN was whispering, "time to retire from acting." And retire I did. I've replaced one communication art with another. Do I miss acting? You bet I do! Am I filled with remorse? See my favorite quote.

JOHN: Do you have a favorite quote, life motto or personal mantra?

@ray666: As a fellow who still believes he lives in Edwardian times, I have been scribbling in a commonplace for the past 20-30 years. Consequently, I have got a treasure-trove of favorite quotes. One that might be appropriate for folks like me who have PN is:

“We are what we are given and what is taken away;
Blessed be the name of the giver and the taker.”
– Wendell Berry, The Gift of Gravity

Hardly a day goes by when I don't stop and think of many things that have been taken away from me, but I don't allow myself to feel remorse; those things taken away are still part of me, for which I'm profoundly grateful.

JOHN: What food can you simply not resist?

@ray666: Pizza. I'm from the Bronx. Thin crust, if you please. No exotic toppings and no fork! That's an absolute.

JOHN: If Hollywood made a movie about your life, who would you like to see cast as you?

@ray666: I doubt anyone will ever want to make a movie about my life. If someone were ever foolish enough to want to do so, I would like to play myself. I used to think that would be impossible – after all, how could the 78-year-old me ever play the 22-year-old me? But now that CGI (computer-generated imagery) has made Harrison Ford look young enough to be able toplay his younger self in the latest Raiders sequel, why the heck not? 😃

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