The Helpers

Living in a Body

The Helpers

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The Helpers

Episode 15 -- Asking for Help and Helping Others.

Hal Walker

Apr 30, 2022

Hi. I’m Hal. I live in a body and this is “Living in a Body.” Welcome! To hear me narrate the story with original music, click the play button. (12 minute listen) Thank you for being here. I appreciate you. Hal

The Helpers

My dad used to always say that the antidote for feeling down and depressed is to visit the “sick and the suffering.” I never got to ask him, “But Dad, what if you are the sick and the suffering? Then what do you do?!” My dad was right though. One of the best ways for me to get out of my own pain is to help somebody else with theirs.

When I was in Austin, My youngest sister Caroline walked into my room and broke into tears. She shared with me how difficult it is being the youngest in the family. She’s got two older sisters that are incredibly wise and always seem to come up with the right answer for any of life’s challenges. Caroline was wishing that maybe once she could be the wise one, maybe for once she could be the one with the right answer.

As I listened to my sister share her pain, I automatically fell into the mode of being the helper. For a few moments, I was relieved of thinking about my own discomfort. I welcomed the role of the supportive brother, the good listener and the caring hugger. I let Caroline know how much I appreciated her for sharing herself with me in this way. For a few moments, I was the helper and I was healed. Thanks, KK.

Julia, Johanna, Hal and Caroline - together in Austin.

I’ve gotten pretty good at asking for help. The fact is that I need help. I’m living with moderately severe ME/CFS. It feels very severe to me, but then I read posts from a guy like Whitney Dafoe who is severe severe and I correct the modifier. These days, I’m not strong enough to shop for myself, prepare my own meals, clean the house, mow the lawn or do my own laundry. So I ask for help a lot.

When the crashes started in 2021, I picked up the phone and started calling my friends. Without even me having to ask, my friends started offering to help. It was remarkable the way people showed up for me. One Sunday morning in August, I called my old friend David Ford to let him know what was going on. Even though we’d barely spoken in the 33 years since college, by the end of the call, David was planning a trip to Kent from his home in North Carolina. On the first night here, as I experienced one of those 2021 crashes, David lay next to me in my bed carrying me through the sleepless night of terrifying symptoms. During that week, he cleaned out the basement, helped set up the house for my newfound disability and planted an amazing winter crop of rye in my vegetable garden.

The members and friends of the UU church of Kent also jumped right in to help. For several months in the Fall, we used a “Meal Train” site to arrange for three visitors a day to assist me with each meal. Katie, Becky, Marion, Dave, Diane, Trish, Don, David, Mike, Vanessa, Kathy, Kevin, Mike, Oviya, Laurie, Ed, Jeff and a few others got to know their way around my kitchen. Each found their own unique way to plate my food and bring it to my bed.

Kim seemed not to bat an eye through the whole nightmare. It was remarkable how she stayed grounded in reality and stood by me to face these challenges in a deeply calm, caring and practical manner. Without question, Kim was a loving force in my life and she was there for me through every twisting corner of this illness.

With the help of Zoom, my sisters became my support team from afar. At the times when I questioned whether I could survive to the new year, they listened and offered me so much sisterly love and care. They took turns traveling to Ohio to sit by my bedside, care for me and coach me through the rough times.

No daughter wants to see their dad struggle with a severe chronic illness, but Hallie has shown up for this with real courage and intelligence. She’s a proponent of the phrase, “this too shall pass, daddy.” In her original song addressing the illness, she coined the phrase “Dear ME/CFS… Get the Fuck out!” Hallie has shown impressive boundaries and a good instinct for taking care of herself when confronted with the emotional challenges of this illness. The fact Hallie exists so well in the world is one of the great sources of hope in my life.

My college roommates, Stu and Jerry came through for me in ways I never could’ve imagined. They joined forces with David Ford to launch a wildly successful GoFundMe and they gathered 40 musicians to play a virtual benefit concert for me and to raise awareness of ME/CFS. Surrounded by loved ones, watching “A Love Song for Hal” on Jan 7 was one of the most profound and touching experiences of my life.

In our texts, Chris Martin refers to me as “Dear Hal.”

Even Chris Martin of Coldplay showed up for me. It turns out that Chris is a mega-star of the super kind, down-to-earth variety. In our texts, he refers to me as “dear Hal.” Chris and I met on Instagram. At a particularly rough moment last Fall, I reached out with a message to let him know what was going on with my health. Within minutes, he replied, “I’ll call you in 15.” During our conversation he asked if there was anything that he could do to help and it occurred to me to be honest, “Well… some friends of mine are putting on a benefit concert for me in January. Would you consider playing at the concert?” His response blew me away a little bit, “Dear Hal, of course, I’ll play.” (Watch Chris Martin’s performance of the classic “As Time Goes By” here. )

When keeping track of all the helpers became too much for me to handle, I called my friend Julie to be the “care coordinator.” It’s worked out really well. Lately, she’s been coming to my house twice a week to help with meals. Julie has a special gift for weighing and measuring salads.

I’m sorry to say that about 2 weeks ago my symptoms took a turn for the worse . The last two weeks have been a couple of the most challenging weeks of my life. This onset of intensified symptoms inspired and knowing that Julie was going out of town for a week inspired me to make a Facebook post asking for help. Now I have a whole new list of phone numbers of people who are willing to do dishes, clean the cat litter or sit quietly with me. Maxine was the first to step up. For the last couple days, She’s been a delightful bringer of the lunches.

I’d much rather be posting pictures of amazing vacations. :)

Over the years, I’ve noticed that people rarely ask me for help. Sometimes I wonder if I give off some kind of vibe that I’m too busy or too self-absorbed. I like to imagine the healthy version of myself out in the world being a great helper — volunteering to shovel snow, weed gardens or pick up trash along the river. I think about how much I’d love to deliver groceries to people who are housebound or bedridden. Of course, when I was stronger, I didn’t do any of those kinds of things. I was too busy building the Hal Walker Enterprise. (See No More Striving) But I’ve been on this side of the help long enough now hopefully to have learned my lesson. I want to be of service. I know what a joy it is to be the helper.

I have a limited capacity for helping, I can’t mow your lawn or clear out your garage, but maybe I could listen for a few minutes. If you ever have a grammar related problem, I’m your guy. Three years of high school English with Mr. Pollack set me up well for a lifetime of avoiding passive voice and dangling modifiers. Seriously, if help is ever needed by you... consider asking. :)

The help that I’ve received in the last year has been stunning. I’m sorry that I can’t name every one of you here. Thank you, helpers. People have shown up for me in ways that were unimaginable before all this craziness began. Again, thank you, helpers. Thank you for the love and the care that you have shown me. Thank you for helping to get me through the most challenging year of my life. I’ll never forget it.

I often think of the people living with this illness that don’t have the kind of support that I have. ME/CFS can be so debilitating, so maddening and so isolating. It can turn a life upside-down overnight. I pray that somehow my own story can help another who’s living with this mystery illness. I’d like to end this post today with a moment to remember the #millionsmissing — the ones who are prisoners in their beds and suffering in silence.

Thank you so much for reading. Thank you for listening. Let’s just pause for a moment.