To Hell And Back

I don’t write much any more – partially because it’s hard (and even I can detect a tone of whininess in that statement) and partially because I often feel like I don’t have anything to say. I think I’ve forgotten the reason I started writing this blog in the first place: to tell you about what living and dying with a chronic, debilitating disease nipping at my ankles is like. I’ve gotten into the habit of thinking that if I don’t have something uplifting or instructive to deliver like a pearl on a satin sheet, that I shouldn’t write at all. With some help, I’ve come to realize that it may be the best time to write, though. I don’t know – you’ll have to tell me.

It’s my special conceit to think that my writing is uplifting or instructive in the first place. I can get preachy, I know, and I have an unhealthy attraction to trying to tie the events of my life to universal truths or Hallmark moments. On my better days, I can see that the events of my life are not unique – everyone has similar things going on, and everyone reacts to them in their own way. The pandemic has underlined that basic truth for us all, and I’m no different.

The isolation brought on by the pandemic has been difficult to manage for me. Social outlets that I didn’t realize were so critical to my wellbeing have evaporated, and it’s a banner week when I actually leave the house. I don’t ride my bike anymore, because my balance is so bad that it’s dangerous. Even a stationary trainer setup with the bike is risky – I’ve fallen several times getting on and off. Falls are among the leading cause of death for PWPs, and I’m not ready for that, so riding is out. I’ve started to do chair exercises with YouTube (my closest friend these days), and it keeps me moving even if it does seem a little weird. I’m pretty good about doing them consistently, but apathy is a problem, and I don’t do them every day. It’s an opportunity for improvement.

My world has shrunk down about as far as it’s possible to shrink. I read a lot, but not quality literature – Moby Dick is not on my reading list, and Dostoyevsky is just a Russian name that’s hard for me to pronounce. No, Ive been applying the remainder of my intellect to becoming expert in a field that’s been on the fringe up until recently. I don’t talk about it much, since it would make people think that I’m less “all there” than I really am, but I can tell you, right? You won’t tell anyone.

I’m becoming familiar with the world of UFOlogy. Since the US Navy disclosed that they intercepted and tracked several unknown objects that exhibited flight characteristics they couldn’t explain, I’ve been digging into the subject with the commitment of the recent convert and the skepticism (hopefully) of the hardcore engineer, and I’ve come to the conclusion that there may actually be something unexplained here. I’ve always been a science fiction fan, and willing suspension of disbelief comes as easily to me as falling off a bike these days. This seems different to me, though. In my engineer mind, I know it’s unlikely, but there’s just enough actual mystery to the accounts that I can’t shake my fascination. It occupies my time, at any rate.

So, that’s my life these days – I watch TV, do chair exercises and read about UFOs (we call them unidentified aerial phenomena (UAPs) now – I told you I was current). I don’t volunteer much. Public speaking is out, since I’m so hard to understand it’s frustrating for both me and the audience. Through a combination of operational instability and the effects of the pandemic, SA Moves (the nonprofit that I led) is no more, and my work with the Davis Phinney Foundation had to come to an end because of lack of energy on my part. I didn’t realize how much my work as a volunteer meant to me, but it was very meaningful, and there’s a void left behind now that it’s gone. I’m running out of things to fill the void with, and it’s starting to look back at me (if I can still allude to Nietzsche, I still have something left, right?)

My situation is not that unusual in today’s world, though. Plenty of people have lost things; livelihoods, sources of meaning and identity, family members. It’s all hard to navigate. My response to all the changes in my life was to go dark for a while; maybe not the best choice, but it’s the one I made. By writing this blog entry, though, I’m choosing again.

At this point, I usually broaden the scope of my comments and explain to you how you should interpret them. Not going to do that this time – its unsolicited advice at best and insulting and demeaning at worst. I’ll just say that if, for whatever reason, your life is going to hell right now, I hope that it’s a round trip ticket.

18 thoughts on “To Hell And Back

  1. Ashley james

    I would just like to say, I consider your lovely daughter Becca one of my very best friends. I told her today, how much I love and enjoy reading your brilliant and intuitive writing. I think it can be so powerful to share the depth of our struggles, and not just our “highlight” reels, as social media tends to portray these days, lending to a lot of isolation and loneliness. It makes us feel like we are alone in our angst, struggle, and despair. I can’t begin to imagine how difficult it must be to begin to feel trapped in your own body. I know you don’t know me but I think and pray for your family often. You are a brilliant and introspective man, and I so enjoy the words you leave here for us. Thank you for documenting all of the good, bad and ugly of the human condition.


    Ashley James


  2. James Richard Taylor

    A very articulate and moving piece. Thank you for sharing this. If you feel stirred to share again please do! God bless.


  3. Lorraine

    Corey, It is WONDERFUL to read this because it is like resuming a conversation with a friend as if no time had gone between. May you take some more moments to write. I like knowing what’s going on in your world.


  4. Larry Haron

    Corey, as always I’m grateful for your transparency, your well placed humorous quips and simply the ‘you’ that is so unique in your writing. I feel the heaviness of your isolation as I read it. It concerns me. Wish I lived closer to you guys. I truly believe your years of investment in SA Moves and work in the David Phinney Foundation continues to bring hope and encouragement to many. I’m blessed that I got to see you in action twice, once for an SA Moves presentation to PWPs/caregivers and again for the hospice staff where I worked. Thank you for writing again, Corey. It means a lot just to ‘hear’ you. I consider it a blessing.


  5. Bob Thunker

    Corey, don’t ever apologize for what you have to say, my friend. It matters and your words are always interesting, insightful and reflect your wonderful sense of humor in the face of challenges and diversity. No matter how many times I read your blog, it always makes me reflect on how life can throw us a curve ball and also the many things I take for granted. Your ability to write is a gift and I for one, enjoy hearing from you. Wishing you all the best!


  6. Wendy Heilig

    Writing is hard when you are dealing with challenges on so many fronts, and what the world has been dealing with the last two years added a new layer for you, as well as all of us.

    Yet writing is how some of us cope with all the pain and emotions that we go through, so I am glad to see you have come back to share once again.

    I consider myself lucky to have known you all those years ago and can hear your actual voice when I read. You were one of my favorite bosses and I still love to hear your stories perspective, and humor as I go through my own life challenges.

    Keep discovering more about what I have always known – we are not alone in this universe. 😉

    Sending good wishes your way.

    ~ Wendy


  7. David Dale

    Corey, Your writing is very meaningful and I have missed it very much. You are honest and tend to bring a smile to the face of the lives you touch. What If you posted a blog letter to each of us in your blogoshphere? I remember seeing you at SOS when you were an AF engineer. You are very brave to face the life you did not choose, but I have seen first hand the impact you have had on other’s lives. My mom has greatly benefited from your PD wisdom and I will always remember that. (And you taking up pistol shooting with PD. I love and recommend your books!) God Bless, my friend. David


  8. Kathy Schwartz

    Glad to be reading your posts again. It may not be in the way that you used to help others, but in your writing you continue to help!
    I often think of you and how much you have inspired others to live well with Parkinson’s.


  9. Lyn

    Corey, I love hearing your “voice”! Thank you for blogging again! Your UFO–oops! UAP–readings sounds interesting! I’m praying the Lord show you something to fill the void left by your no-longer-volunteering. Love and hugs!!


  10. Marti Reagan

    Corey, after a long silence it is good to hear from you. I always enjoy reading your posts, delivering tragedy sprinkled with humor and dignity. I have many memories of our interactions at former ballet events, with you, Amy, Becca, and at least once, with Andrew who sauntered into the theater with you sarcastically whispering, “Dressed to nines again”. You were and still are someone that I admire, and those snippets of times shared I will always cherish. Soldier on, my friend. Marti Reagan


  11. Corey, I feel you more than you can imagine. It’s kind of like I am sad that I am not as active as I used to be in the Parkinson’s community, but also my apathy is relieved that I don’t have any depending on me. I hope you keep writing. I’m sorry to say this, but I am glad you are in this place because now, I selfishly know that I am not alone. I personally like to read zombie apocalypse or other trashy books… It makes it easier to just immerse yourself into an alternate reality. Best wishes!


  12. Marty

    Glad to see you writing again Corey. I hope that while you’re trapped in you house, you can at least spend a bunch of quality time with your grand child. I’m sure you both would benefit greatly from bonding. Always praying for you buddy.


  13. Natalie Brader

    Corey – you have always been an inspiration to me from the day I met you. Your blog illustrates your willingness to continue to learn and adapt always. Keep it up and take care!


  14. Corey, I feel you more than you can imagine. It’s kind of like I am sad that I am not as active as I used to be in the Parkinson’s community, but also my apathy is relieved that I don’t have any depending on me. I hope you keep writing. I’m sorry to say this, but I am glad you are in this place because now, I selfishly know that I am not alone. I personally like to read zombie apocalypse or other trashy books… It makes it easier to just immerse yourself into an alternate reality. Best wishes!


  15. Tommy

    Well welcome back to the world.
    You write beautifully.
    Wish I could understand what you’re saying. But between some cognitive issues and having the attention span of a three year old my brain shuts down when my eyes open. Haven’t totally become a recluse yet. But trying hard to master that art from. Take care my friend.


  16. Oh, wow! I work closely with people who host similar conditions, and really value such commentaries. You write beautifully. I’ve never known anyone get negative co sequences from doing a bit of exercise (well, the occasional bump, but they heal), so hats off there. I’ve nothing especially clever to say, just thanks for the time you’ve taken posting this 🙂


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s