Hi! “Living in a Body” is now available as a PODCAST. Click the play button above to listen. (10 min. Exactly) Hal
Trigger Warning: This episode mentions calls to a crisis hotline and uses the F-word twice.
Ep. 5 - I Love Crying
I don’t remember exactly how the story goes but it’s stuck in my memory as being important. It was a hot summer day and I was driving home from Aldi in Stow with the windows rolled down. At the stoplight on Fishcreek Rd, I pulled up beside an old Toyota expecting to wait for the light to turn green. I glanced over at the car next to me and I realized that it was my friend Daniel. His window was rolled down too and he was visibly crying with tears coming down his face.
I’m not sure, but I may have said “thank you.” It may have just been a thought , but if I could relive that moment, I would say it out loud. "Thank you, my brother. I love you, Daniel. Thank you for being human. Thank you for sharing it with me in this unexpected moment surrounded by cars, strangers and heat coming up from the concrete. Thank you for showing me your tears. You have no idea how much it means to me.” That would have been saying too much, but little did Daniel know that his crying in the car would stay with me for years.
I’m an advocate for crying. Just so you know, I cried several times when I wrote that last paragraph. I deserve to cry. I mean 2021 was a rough year for me. Sure, people keep telling me how inspired they are by my positive attitude and yes, I’m finding ways to make the best of this one life, but it's been a year of loss and grief. I’m glad I cried as much as I did along the way. Truly, I appreciate the role that crying has played in my life. I'm so glad to be able to feel.
The first major "crash" happened at the beginning of August. On Tuesday night, Kim and I were sitting on the front porch with the crickets. I was expressing to her my frustration with not being able to accomplish all the things that I want to in life. There just never seemed to be enough hours or days or years to learn all the technology, produce all the music and build all the empires that are churning in my soul. It was a beautiful August night. Kim and I made a list of my passions-of-the-week and she suggested that I focus on just three of them this week. “That sounds like a great idea, Kim. Thank you. Goodnight. I love you. ❤️”
I took a night scooter ride into Kent and then came back home to practice the chuka-chuks (rhythmical Juggling) before bed. A mosquito sprayer passed by my open office window and then I noticed that the ringing in my ears suddenly got louder. This was the first sign that something was wrong. I slept through the night and woke up to a whole new reality. Something in my body had shifted. Similar to April 1992, January 2007, and March 2013, some kinda switch got flipped. This crash was the first of a life-altering five-month-long series of crashes. It remains a medical mystery to this day —Myalgic Ensephelo-(fuckin)-myelitis/Chronic (fuck you) Fatigue Syndrome.
Each crash left me in a deeper state of illness — closer and closer to being bedridden. Every 5-8 days, it would happen in the same terrifying way and I have no idea what was causing it. It was like a chemical dump of adrenaline or some wierd kind of neurological seizure. The ringing in my ears would suddenly get louder, my heartbeat would spike, I'd have a sleepless adrenalized night and the next day I’d be left feeling like a limp rag that had been put through the ringer many times. I started marking the crashes on the calendar and I started calling the local crises hotline in tears.
I was never suicidal but at times I was very interested in figuring out a way to get my family to agree that a compassionate exit might eventually need to become an option. The first time I dialed 330-676-HELP, I was impressed by the operators compassion. "It's ok to cry," he kept saying over and over. "I'm here… That sounds very difficult… I know… I know…It's ok to cry." The conversations always ended with me promising that I would call again before taking any drastic action. I promise.
My sister Johanna has played an important role in my crying life. For many years, she's been active in the co-counseling community. (Re-evaluation Counseling) When we have a “session” together, Johanna and I set a timer and we take turns listening -- holding each other’s complete goodness in our delighted attention. We’re making up for all the times the well-meaning adults of our childhood tried to make the crying stop. In RC, it's called discharge. Discharge can show up as crying, laughing, shaking, yawning, talking or punching a pillow. The thought is that after we discharge, we get a new perspective on reality. We’re able to appropriately differentiate between the hurts of the past and present time reality. When I call Johanna, I don't have to tell her the whole story, I can just jump right into the discharge. “Johanna, will you listen to me cry.” “Yes, Hal. I will.” She listens for a while and then it’s my turn to listen. If you don’t know her, Johanna Walker is a bit of an emotional rock star in my world.
One memorable crying session of mine was a couple weeks ago. As you may know, three college friends of mine spearheaded a wildly successful fundraising concert accompanied by an equally successful GoFundMe campaign. The funds raised at "A Love Song for Hal" have made it possible for me to pay medical bills, hire a caretaker, own an electric wheelchair, purchase a much needed stairlift and make a large donation to the Open Medicine Foundation for ME/CFS research. (See the Announcement) For a least a little while, I haven’t had to worry about the financial devastation that severe ME/CFS can cause.
On this particular evening, I knew that we were approaching a significant fundraising milestone. So just for the heck of it, I hopped over to the GoFundMe site to check out the numbers. It appeared that within the last hour, three donations had been placed simultaneously bringing us over this incredible milestone. The three donations were from my three dear college friends — the guys that had masterminded this whole extravaganza — Jerry, Stu and David. It touched me so deeply. I lay there and wept in amazement and gratitude for their thoughtful scheming. I’m still so moved when I think about it.
Things have balanced out a bit since the new year. For whatever unknown reason, my last crash to date happened on Christmas Day. I’m in a more stable place these days, but I’m still prone to crying and I’m glad for it. Ever since my dad died, there's been one sure fire way for me to enjoy a good cry. All I have to do is start speaking aloud an imaginary conversation with my dad. It works every time.
"hey, dad… i know, son… it’s been a rough year for me, dad…i know it's not easy…i'm so proud of you, son…i know, dad… it’s ok to cry... i know… i know… dad, wanna go on a bike ride with me?… i’d like that, son… i love you, dad…. i love you, son.”
Do you like what I write? As long as this body allows, I’ll keep putting it out there. Please help this community grow by sharing it with one person.
Follow me on Instagram. (82k followers)
Hang out with me on TikTok. (1.5M followers)
Grow with me on YouTube. (53k subscribers)
I haven’t figured out Twitter yet, but I’m there. (298 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168