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How Can I Help
On Tiktok, I posted a post about the fact that I'm living with severe ME/CFS and there was a thread of comments that broke my heart a little bit. I want to read it to you. I often get the question, “How can I help?” And today, I guess I'm gonna try and offer some suggestions.
But here… this starts with “my friend has ME/CFS as well. Does it get worse by time?” And someone suggests, “try to be there for them, the people and the support around us is all we have.” Next person says, “My co worker's wife has it, and she's bedridden.” “Damn man. He can't even leave his bed as well, and he's only 23 years old.” And the next guy says, “Bro, that's insane. I never heard of this until recently. Started off as a misdiagnosis of myocarditis, then went downhill. Really, no good treatment out there either.” “Absolutely and it makes me sad seeing him that way.” Next guy says, “Just don't stop seeing him any chance you get. Have a few minutes, just stop by and lift his spirits, let him know you're there for him and that you haven't forgotten him.” Next guy says “He's 23?!” “Yeah.” “Really sorry to hear that man. Try to make sure you're there for him, the best you can. It probably makes him pretty happy to see you care. Friends like that are rare.” “Yeah, man, I'm devastated. He was my gym buddy and now he can't get out of bed. I'm doing everything to get him back. I'm searching for cures and solutions. He doesn't have anybody, bro. I can't just let a human being cripple into depression. I'm getting him out of there, trust me.” And someone comes in with some clear advice, “Resting and pacing is crucial. A day in the gym could make it a lot worse.” “Maybe just take time to hang out in bed together.” “Damn man, that's what's heartbreaking for me. You can't even fight through it because it gets worse. It's a nightmare for every athletic guy, man. I hope you're doing well, you're a hero.”
And it goes on from there.
That's one of the millions, the #millionsmissing and easily forgotten. And I have a platform here that I just want to remind you on this end of November that there are people living with complex chronic illnesses you don't see every day. They're hidden in their bedrooms, behind dark shades and silencing headphones and eye masks, and it's easy to forget those guys.
You know, I'm so busy wrapped up in my life, I forget about everybody. Yesterday, I called a friend. It's amazing what calling a friend will do, or texting a friend saying, “Hey, just thinking about you, sending you the best. Have courage, friend.”
But really, to make this short, I'm gonna say I just gave $100 to the Open Medicine Foundation. They seem to be the best operation out there looking for medical solutions. You know, I know medicine is not the only answer. There's all kinds of psychological and spiritual approaches to this illness, but from what I can see, Open Medicine Foundation really has something good going. And they have a pittance of a budget. I mean, God, let's get a few million dollars over there rather than having bake sale money. But I just gave $100 and during the month of November, it's tripled. If you have a little money, if you have a little spare money, click this link and send some money over to the Open Medicine Foundation at the last minute. It's just during November, Triple Giving. Anything you give will triple.
For myself. When people say, “What can I do to help?” You know, if you're not going to cause any commotion, come on over and sit next to me. If your hands are soft, rub some cream on my feet, (lol) rub my arms and rub my hands. You know, if you can handle it, hold my hand while I cry. I got a lot of crying to do and it's nice to have someone holding my hand while I'm doing it. I know that's not easy. And even better yet, I'll hold your hand while you cry. I'd be honored. I would be honored. Believe me, there's nothing I want to do more than help somebody. But mainly, give a smile, say an encouraging, loving word. We could just sit here and hold hands and think about the good old days. (lol) There's a lot of hand holding going on. Um… Just wash your hands first! But seriously, the life of chronic illness can be lonely. A little touch helps, especially over the holidays.
You know, Thanksgiving was hard yesterday. I spent the day alone, mostly in the dark, feeling pretty sorry for myself. I had a few very nice, long distance phone calls, some great connections. But you know, during that dinner hour, I was in bed moaning and groaning while it felt like the whole world was out there enjoying Thanksgiving. It's a tough road, this road of chronic illness. Don't forget the people, look out for those people in your life that are home bound, bed ridden. And I realize it's not just the chronic illness people that need somebody to reach out. We all need somebody. We all need somebody. Old people, sad people, overworked people, healthy people, lonely people, poor people. We all need somebody. If I could do it over again when I was healthy, I'd spend a day a week. I mean, I say this, it's easy to say in hindsight. I'd spend a day a week visiting the elderly, visiting the sick.
I'm not saying I always want visits, but I'm always open to a spiritual companion, to sit in the darkness and ask God for help. Hey, I want to read one more thing to you. This came across my email. Yeah, I'm a Quaker. I joined the Kent Quaker meeting recently, and I am officially a Quaker. Yay. Hal’s a Quaker. Can't wait for my Quaker wedding and my Quaker funeral. Until then, listen to this...
The first time you practice contemplation, you'll only experience a darkness like a cloud of unknowing. You won't know what this is. You'll only know that in your will, you feel a simple reaching out to God. You must also know that this darkness and this cloud will always be between you and your God. Whatever you do, they will always keep you from seeing God clearly by the light of understanding in your intellect and will block you from feeling God fully in the sweetness of love and your emotions. So be sure you make your home in this darkness. Stay there as long as you can crying out to God over and over again because you love God, and it's the closest you can get to God here on Earth by waiting in this darkness and in this cloud.
-anonymous, late 14th century.
And then one more quote by Eden Grace, 2004, a Quaker Minister.
The only way through the cloud of unknowing is to head directly into the place of greatest uncertainty.
So if you ever want to hang out in the place of greatest uncertainty, come feel free to sit by my bedside, and we'll sit quietly together. And if your hands are soft, feel free to rub my feet. (lol) Alright. sending love from my bed. I want to send love to all those suffering, you know, all those suffering today in bed.
You know, I miss my old life so bad. I want to be out there. I want to be out on the river. I want to be out on the bike path. I want to be on my scooter riding around town. I want to be at the Kent Natural Foods store. I want to be dancing. I want to be contra dancing, playing Frisbee, playing ping pong. You know, I've got a lot of things I want to be doing, but instead I'm sitting here in the cloud of unknowing. I'm heading directly into the place of the greatest uncertainty and I'm sending 100 bucks that's tripled over to the (what's that group called, again) Open Medicine Foundation.
Hal
Oh, look who just showed up. It’s Annette. Annette, this podcast is called, “How Can I Help?” I know you’ve helped alot of people. Give us some wisdom.
Hey Annette.
Annette
Hey Hal, thanks. Um.
Hal
You can be honest.
Annette
I can be honest.
I think helping is the way that many people need to connect with other people. It's a way in to their lives that's not threatening, and I think the person that's offering the help gains much more from it than the person receiving. It touches your heart.
And that's what living is all about — loving and caring for other people and being cared for back. Thanks.
Hal
I couldn't have said it better myself. Thanks, Annette.
That was a little cameo, spontaneous appearance by Annette Dowling, thank you.
Alright everyone. That was Episode 98 1/2. Thank you so much.
All the best to you. Living in a Body. If you've got one, love it. Love it to the end. Thank you so much. Bye, bye.
Hey! Happy Thanksgiving. Happy holidays. Enjoy.
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