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Birthday Banter
Hey, it’s Hal. This is the Living in a Body Podcast. Today is Episode 78 and it’s called…it doesn’t have a name yet because I’m just winging it.
I don't have a whole lot to say, so this should be interesting. It was my birthday the other day. My friend Pat from Kansas City sent me some beautiful flowers in a cute little tin wheelbarrow. It's been sitting on my bed table this week. And then my friends Julie and Brian brought me some nice day lilies. I think that's what they are. Makes a big difference in my room. And the window has been open for several days for the first time in months. I've been enjoying the breeze.
So I'm living an unbelievable life and I want to try to describe it to you. I have basically cut out all activity unless I'm on a half milligram of Ativan. I do all my activity for about four hours while the Ativan is kicked in, which is right now. But when I'm not on Ativan, which is most of the time, I'm lying quietly in my bed in silence, meditating and staring off into the distance. Contemplating reality and saying my transcendental meditation mantra and praying and doing everything I can to calm my nervous system to avoid any further crashes. I haven't told you the story, but for several months I've been having crash after crash and each has brought me to a lower, deeper state of illness.
Today, I'm pretty much fully bed bound. I use the wheelchair to go to the restroom. And I have a full-time caregiver–Mango–who provides all my needs. He showed up just at the right moment. I was really hanging on to my independence. And I finally told my sister Julie, I said, “Julie, get Mango here,” and she bought him a ticket from Kenya. And he showed up right at the right moment when I needed him. I am fully in need of a full time caregiver. He brings me my food, he pours the water, he heats up my broth. Sometimes he'll hold my pee jug, and he prays over me three times a day. He opens and closes the shade. And I am left lying here in silence. Doing nothing. I'm not looking at screens. I'm not opening my phone. Even Mango reads my text messages, because my brain is so sensitive. I cannot read a text message.
I've had some bad experiences with reading text messages where I will go into one of these crazy crashes that lasts about a minute but has devastating consequences. I don't want to even talk about it because it makes me…I'm not going to tell you the experience of the crash right now because it makes me feel like I'm gonna have one. But amazingly, when I have the Ativan, the fear of the crash goes away and I'm able to do a few little things like check my email, or record this podcast. Oh man, it's been brutal. The reality is there's a good chance that I will be needing a caregiver for who knows how long, if not for the remainder. And we don't know what's going to happen with this illness, but the way it's been going, it is not going in the right direction.
I’ve had a few visitors. You know, I started this thing called quiet time with Hal and I've had several people sign up and it's been really nice. I was mildly disappointed in the sign up. You know, people have busy lives, they don't understand the importance of Hal Walker and his quiet time! It does not seem to be on their first priority list. But it's cool. I’ve got some new friends too. I have this new friend Annette who I met at the Camp Friends meeting. And she is just so cool. She comes and sits by my side, and we whisper things back and forth. Spiritual things.
One of the things that's getting me through is my Twenty Four Hours a Day book. This is the AA literature published by Hazelden. Throughout the day, I will open the book to the meditation for the day, and I'll read the meditation for the day and it will guide my thinking. And over and over again, it's spot on. I love it. Like today is all about training, spiritual training. I must prepare myself by doing each day what I can do to develop spiritually and to help others. God tests me. Yes, He does, and trains me. If I'm not properly trained, I cannot meet the test when it comes. So I'm in training now. That really is a helpful way for me to think about my life. I can't do a whole lot, but I can do spiritual training. I must not expect to have what I'm not prepared for. This preparation consists of quiet communion with God every day and gradually gaining the strength I need. So that's what I'm busy doing here: quietly communing with a higher power, quietly communing with the part of myself that knows what the next right action is. Quietly communing with that hidden mystery that is living with me in this room. The hidden mystery, the love, the powerful love that abides in me.
Anyway, so I sit here with my ears ringing, feeling very ill, very afraid. And I just practice quiet. I practice calm all day long. So I think this will be a short one. I'll say that I had a nice little party. Three friends came over on my birthday and we sat around in the circle. I love that kind of thing! Man, that's what I want. I want people to come over and sit around in a circle. And let's share. Let's do little ceremonies and rituals and stuff. This alone life is brutal. People were not meant to live alone like this. I mean, I live with Mango, and he's wonderful company, but I loved it. The other night, three friends came over and we sat down and we took turns going around the circle giving our hopes for the next year. And I just love that kind of interacting. We were sitting on the floor with candles lit, and there was a flower in the center. That's what I'm all about. It's much harder to create ceremony and ritual when you're all by yourself in a bed in a room. So if you want to come over and have a little sharing time, just let me know. I'm gonna create Quiet Time with Hal and then we're going to do…I don't have a name for it yet, but we’ll have Sharing with Hal.
The trouble is, unless I’m on Ativan I have to be whispering, and very cautiously whispering. I do not have any strength in my voice. And by the way, everyone who visits has to whisper too because I'm so sensitive. Sometimes I'm even scared of a passionate whisper. Someone came over today, and they were passionately whispering. And I was like, “Whoa, hold back. Be careful. Be careful.” This is wild. Chronic fatigue syndrome, myalgic-ensephalo-fuckin'-myelitis is a nasty illness and you don't want to get it. I had no idea what I was getting myself into when it came into my life in 1991. There's no help for it. The doctors are clueless. It's like we gotta make it up ourselves?! We got to make it up ourselves how we're going to treat ourselves. There are no doctors. I'm going to this ME/CFS support group on Saturday nights, and everyone's in the same boat. We're making it up. We're making up our own treatment from the nastiest illness on the planet. It's like a bunch of cancer patients getting together and thinking, What are we going to do now? Let's figure this one out on our own. Unbelievable.
Alright, I better simmer down, I'm getting all heated. But I appreciate you listening. I've been writing letters. I've written a few letters, though I can't write when I'm not on Ativan. This is not an advertisement for Ativan, by the way. Use it cautiously. I am not promoting it. I use it very, very conservatively. Just to have a little bit of a life. But when I'm not on Ativan, I'm not strong enough to write. And then a half milligram of Ativan somehow takes the edge off my brain and maybe gives me just enough strength to write a little letter. So today during this Ativan session, I've written a letter, responded to some emails, responded to some texts. Now I'll go two days without looking at my texts, without looking at my emails,
I've got a helper Cameron Mack–a shout out to Cameron who is helping me out so much. He's helping me keep my budget, he’s helping me keep my accounts straight. That guy is great. Cameron Mack, if you ever need a recommendation for a job, or to be, I think…I just think you're a good man. Though you do have some things you need work on, haha. We'll talk about those another time. Anyway Cameron, keep up the good work. I really appreciate all the help you're given me.
Alright everybody, that's it. Believe me, most of the time, I am not this animated. I am lying in bed silently whispering in fear, cautiously. Oh, and eating has been a huge issue. I'm struggling with eating. My stomach is like a nasty sort of soup of turmoil. Every time I eat it just turns into this thunderous turmoil. It's very scary. But I'm still here, man. I'm still here and we're still living in a body.
I love you. Thank you. Thank you for being here. Thank you for caring, for listening. Okay, I don't know when the next one of these is going to happen, but hopefully this isn't the last. Bye.
Birthday Banter