has anyone ever written anything for you?

First things first please, take a few minutes to listen to this song and story behind it and then I promise I’ll talk your ear off.

There’s a special kind of grace needed when you have a “chronic manageable disease” like HIV. See people will tell you that “Oh yeah. My neighbor has it and he’s fine”, “Oh I just read a thing about a girl in France who cured herself from it by going vegan” or “Maybe you should take more vitamins/take less vitamins/get new medication/stop medication/do yoga/do Pilates/meditate more.” Grace comes in handy when you can nod your head and say, “Okay.” But the thing is these poor, well-meaning folks are just trying to say something to make you feel less awkward and don’t really realize that we’ve pretty much tried everything if we’ve had a manageable disease for a few years. I’ve told this story on these pages before but its a funny one and worth repeating. When I was first diagnosed with HIV nearly 4 years ago in August, my nurse when trying to talk me off the ledge said, “HIV is a manageable condition like diabetes.” Oh in that case, sign me up. because diabetes always seemed like a trip to the tropics. Tahiti? No thanks! Who needs it when you have diabetes!

Also, let’s talk about this manageable word they like to throw around.Doctors are in essence are telling us that we are becoming managers of whatever our given affliction is. Correct me if I’m wrong but management seems like a lot of work. Whether you’re managing Mariah Carey or a McDonald’s, managers are some hardworking motherfuckers. As my own condition has recently caused me some health problems with a side order of fear ( I would have rather had onion rings, by the way), I have to get into gratitude. I am grateful that it’s treatable and that I have good doctors. I’m grateful for all the prayers and spiritual assistance. Yet I acknowledge that it sucks and that it’s hard. So here is where Stevie comes in.

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That song so beautifully talks about giving it away when you feel the absolute worst. I hope I can do that. I need to do that right now. Here’s my attempt to do so. If you have traumatic brain injury, manic depression, rheumatoid arthritis, bipolar disorder, suffered a stroke, are getting off drugs, have just lost a loved one, can’t get out of bed, tried to kill yourself, suffering from MS, learning to walk or speak again, trying to not pick upon a drink, livingย with HIV and yes diabetes; all I can say is I get it. As a bonus, I won’t tell ย you what books to read or that my old English teach has whatever you’re dealing with. ย All I can tell you is even if it is manageable, I know you hurt , that everyday is a battle to stay positive and healthy and that I am sorry. I hope you can laugh, I hope you do nice things for yourself and know that by fighting and managing everyday, you’re helping me and lot of other people. So has anybody ever written anything for you? I have.

And I hope you can do the same for someone else. As Stevie says, “If not for me, do it for the world.”

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7 thoughts on “has anyone ever written anything for you?

  1. Thank you for your kind words on my blog…and thank you for this beautiful piece. I suspect I’ve found a new favorite blogger. Have a beautiful day!

  2. (I apologize for the length, but context is needed.)

    At 24, I was involved in a car accident that would have killed most people. I ended up with a traumatic brain injury (which became epilepsy). I don’t remember three weeks, or much of the following years of school.

    One thing that happened after the accident was that I had a lot of doctor’s appointments. That wasn’t so much of a problem, but some classes had restrictions on how many times you could miss and still pass. I ended up taking Public Speaking three times – even though I’d have no problem doing the work. I just couldn’t attend. It was terribly frustrating, but I soldiered on. After almost flunking out of college, I graduated in 2001 (taking ten years to earn the B.S.) with a 3.75 from Purdue.

    Some time later, around 2005, I was living in Anaheim. I had a Myspace account, and I was contacted by a guy from Purdue whose name looked familiar, but I couldn’t place. I friended him, and we started talking. He eventually asked for my phone number, and I gave it to him. When he called me, he said how happy he was he’d found me. He’d been in one of the Public Speaking classes I’d dropped from, and he’d never seen me again, but he needed to tell me how much he appreciated a speech I gave.

    I don’t know what the assignment was, but for some reason, I gave a speech about the time I spent working at a dialysis clinic. I explained my job, how I felt about the patients, how hard the nurses worked, and how difficult it was to work with people who you knew weren’t going to get better. Before he reminded me of it, I didn’t even remember giving the speech. For him it was deeply important. His father had had Ulcerative Colitis for quite some time (including requiring surgery), and now he had developed it as well. While the disease process still scared him, my speech had made him feel better about caregivers for people who have chronic conditions. He was scared, and it made him know that their compassion was not a mask used to put patients at ease.

    You can’t ever know who it is that will take your words to heart – or who it is that needs them.

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