I’m writing this while bundled up in a thick bathrobe. Yes, I know, it was in the upper 80s yesterday, and it’s in the mid-60s now, but post-treatment, I get incredibly cold … but we’ll talk about that in a few paragraphs. I wanted to write a lengthy, honest, and detailed update, because it’s easier for me to be transparent than panicked and quiet. And because I’m tired of worrying today, I’ve been doing it for nearly 5 hours, and I’d like to be doing something else with my day. Like napping, or depending on what the construction crew finishes up today, cooking.
So let’s start at the beginning. I continue to be dying. It sucks. It sucks a lot. It’s hard to stay positive all the time, and I often feel the need to put on a brave face to save people the effort of trying to say the same six things about what I should believe in, or how they don’t really know what to say or how they heard on the internet that the exact solution to my problem is some potion or unguent made from things I’d never believe. I’m dying from a heart that doesn’t want to be a heart anymore, and yes, it is physically painful at times. I ache and wheeze and cough, usually at night, or when people really get me laughing, so that’s a mixed blessing. The original timeline had me dead within 5 years. News like that has a way of galvanizing a person into prioritizing actions, and immediately forgiving the people who break your heart and act like you didn’t/don’t matter. It allows you peace, different from that peace that comes from being suicidal, because you learn that some of the stuff we talk about just isn’t really that big a deal. You learn who can stand with you, and who wants to stand with you, and who wants to run away, and probably my least favorite, the people who just want to appear to others that they’re standing with you, but it’s all for appearances. I have a huge problem with people who are overly conscious of appearances now. They leech energy from me I don’t have.
Once you get past the initial scare, the shock of “my dog is going to outlive me”, you start to try and continue to live. It’s tough, because you start asking yourself, “Is this the last time I’m going to be ______ ?” where the blank could be anything from buying this brand of shampoo to wearing a particular shirt to thinking about buying holiday gifts for your mom. It took me a good two weeks to realize that even in 5 years, I’d be doing a lot of showering and pooping and eating french fries, so I wasn’t exactly on a farewell tour yet.
I also started to realize that a lot of people didn’t know how to interact with me. They didn’t call so much. They didn’t want to make jokes about completely funny things. They didn’t return emails. The offers they made about work dried up. When I would pursue these things, I’d get one answer: “You should focus on your health.” or “Your health is more important than anything else.” I’d like to talk about that a little.
No one is disputing how important health is. But there’s a difference between “focusing on your health” and “sitting in a chair staring out a the world, constantly afraid that if you get excited or turned on or even eager about something, your heart will give out.” In the absence of work, you do a lot more of the second than the first. I can focus on my health by going to the many doctors’ appointments and seeing the many specialists, but work also provides me two things: an income and a chance to feel not like a cardiac leper. I want to work, I can still work. I do a lot of sitting, and that means I can do a lot of editing, developing, brainstorming, whatever-ing. I’m still good at it. I still love to do it. I am not giving up.
Let’s get real about the finances. I’m practically broke. I have money in bond funds and retirement accounts, but the thick stacks of virtual cash in checking accounts has dwindled down to double digits. Because the bills I receive and have to pay have at least two zeroes before the decimal point, and that’s even with a payment plan. Getting sick, really sick, in this country is terrifying, and money vanishes so quickly when eleven bills come rolling in at once. The medical bills have been paid off, but the utilities are past due, and I’m already getting phone calls from people asking if I can do more than give them five dollars here and there. To combat this, I’ve got two things you can do:
Hire me (more on that below)
Buy things I’ve written
Now, if you’ve followed me on Twitter, you’ve been seeing photos of my kitchen getting remodeled. If you’re about to say, “John if you were going broke, you shouldn’t have remodeled the kitchen.” let me point out that I set the kitchen remodel up LAST YEAR, when I wasn’t even aware I was as sick as I am. Also, the kitchen’s paid for, this is just a matter of installing it. I won’t even bring up how badly the kitchen needed both updating and repair. The fact that the stairs have a railing (great for me with the cane), makes it so much easier to traverse my house.
I am incredibly disgusted with the state of health care and health insurance. I have health insurance. I pay for it myself, and it’s several hundred dollars a month, and that number seems to be climbing. Even with insurance, I’m still paying hundreds or thousands of dollars for medications and tests and appointments, and that’s just a fraction of the actual cost. As I told a doctor this morning, if I had no insurance, I would have killed myself the day after my diagnosis, since no one can afford to live while this sick. And that saddens me. It frustrates me. I’m not sure who’s taking my money when everything is all said and done, but i have a sneaking suspicion that there’s a dude in a suit somewhere just pocketing a corporate salary while I’m trying to figure out how not put more money on a credit card.
But there’s hope. I have hope. I’m receiving an experimental treatment that has so far improved my heart 31%, and I can happily say that this morning I was removed off two lists for emergency transplant and extreme medical care. I’ve lost weight and am wearing clothes in sizes I haven’t worn since high school. I’ve put on muscle. I’ve learned to take the intense waves of pain and shove them to the back of my mind, allowing me a chance to do things like write blogposts or read or have conversations at speaking volumes above a whisper.
The newest lifespan projections for me have me at 20 years or more, meaning I’ll be well into my upper 50s or early 60s before I slide back into the state I’m in. Those are estimates, they’re guesses based on equations no one can explain to me, but I’m buoyed by the idea of being able to live long enough to complete a few goals of mine. Now’s a good time to talk about those goals.
I want to see my name on more products, which means I want to work. I want to help people get their stuff out there. To readers, to players, to whatever audience. I want to see people excited about their futures and their opportunities. I want people to have that feeling of satisfaction and accomplishment, and I want to be able to say that I helped.
I want to produce my own stuff. The tough part about being a guy who helps is that you don’t always get credit, and sometimes, a little ego stroke isn’t a bad thing – recognition for hard work builds esteem and confidence after all – so it’s something I want to do. Of course, the money I was going to use to put art on Noir World has gone to pay medical bills. I spend a few quiet moments regularly wondering if it will ever be more than a Word document or an artless, layoutless PDF that I made.
I want a family. One of the weird things that no one talks about when you’re young and your heart sucks is that doctors really want to know if the rest of you works. You put a lot of different fluids in a lot of different jars and I don’t know whether it’s so i can get cloned later or just stored like the Ark of the Covenant by top men, but nearly every doctor’s visit makes mention of how the rest of my body is in good shape for everything from sex to exercise to yoga. Yeah, I don’t get it either, but I’m not going to argue when the doctor says one of the things that reduces my symptoms and helps me feel better is “a lot of hugging and cuddling”. I might be sick, but I’m not oblivious. I want to know I’ve left a legacy, and if I’m lucky, that I’ll have a direct hand in raising a small human to be far better than I could ever dream of being myself. That really means a lot to me, and while it’s been a dealbreaker in past relationships, I’m excited to think of the future when it won’t be.
I like living. I have joked that when I was suicidal and unmedicated and un-therapy-ed, I kept trying to die. Now that I want to live, everything’s trying to kill me. Which isn’t true. Not everything. Not everyone. There are a lot of great people who support me and love me and have offered to have meals with me and spend time with me. There are great people who have listened to me cry or complain or even just wheeze and try to laugh. I love these people, and although we do not share a surname or blood, I call them family. They make my life better. I want to keep living. I’ve finally made that distinction (thanks to heartbreak) that you can’t do things in your life for other people, because sometimes even when you do, the people don’t appreciate it or because it doesn’t bring you the satisfaction you thought it would. No, you’ve got to do things for yourself, to help yourself, to take care of yourself, and support yourself. So, I’m worth it. I’m worth the effort of staying not dead.
The plumber has informed me that the water’s shut off for two hours while he and his plumber goon set up the appliances. He warned me not to shower or use the bathroom, and of course, that’s exactly what I want to do now. I’ll settle for sitting here and trying to stay warm.
For the people reading this who don’t know how bad it’s been, I am sorry I haven’t been more forthcoming. There’s a lot of shame involved with admitting you’re doing to $75 dollars and whatever’s in your fridge. There’s a lot of combatting a sense of personal failure that you just haven’t been alluring enough or have said enough to make someone want to hire you for a job. (sorry, I dozed off for a few minutes while writing, I do that, it’s a thing. I used to laugh when it happened to my grandfather, now I don’t find it anything other than sad)
Please, please take a moment and spare a good thought and then some for me. If you can, lend a good thought and a chance to help you do something. I can work, I want to work. Let me show you how good I am at what I do. Let me show you how even with IVs and coughing and rough pain moments, I can still help you make your dreams come true, because when it all comes down to it, you guys help me make mine come true all the time.
After two thousand words, I think it’s time to lay down for a while. I think it’s time to rest and rekindle that sense of hope and confidence that I’m going to be in the small percentage of people who beat the odds and who overcome obstacles and whatever other cliches you can put in here … I’d even take a Rocky montage.
You’re such good people, you’re amazing and you’re talented and you’re good enough and you’re capable and you deserve success. I hope you continue to keep creating and being awesome. Don’t you dare give up, because I want to be there celebrating with you.