The Free Advice About Illness and Dying and Maybe Life Post
The first bit is 'don't listen to me' but if something in here accidentally helps someone then great.
I’m not a huge fan of advice. I’m coming around to it but I’m still extremely skeptical of it. Ultimately it’s probably a pride thing. I especially dislike unsolicited advice, which this is. However, I know there are people who might read this that are going through something similar and are looking for someone to give them a way to get better or feel better.
I’m not that guy. I don’t have all that much for you and I’m sorry. I can give you a recipe or tell you a joke or even help you with a skill, but like life advice? Life and death advice? There are people out there who have been sicker longer and made closer friends with death that could probably serve you better. Also I’m a clown, not a doctor. I never studied medicine. I haven’t taken a science class since high school. If I speak or write like an expert or authority it’s just because I paid too much money to learn how to speak and write pretty good. My life was a disaster even before I got sick. If you can believe it it’s less of a disaster now. Maybe I did learn something useful.
On the off chance this is useful I’m not going to hide it behind a paywall. I don’t want you to subscribe to this project thinking that I’ve hidden the secrets to life here on Substack. Learn how one man beat mother nature, liver failure, and death itself! Doctors HATE him! I am a grifter, but even I have limits. Do not take advice from me. You will die.
If you’re fine with that, welcome to the advice. I’ve tried to boil it down a bit. I’d say it’s brief but again, I’m lying. What I tell you going to sound cynical maybe, and it might make you sad, but that’s not what I want it to do. I’m not a cynic. I’m not a nihilist. I think happiness and connection are possible, and I think there are similarities that connect every living person even in their variety. Like wine - plenty of differences and worth noting and celebrating their uniqueness, but in the end it’s all just fermented fruit juice. To carry the metaphor to the end, if people are kinds of wine, the “I’m not mean I’m just honest” or “I’m not a pessimist, I’m a realist” is the prison toilet wine varietal. I’m not a cynic, and I don’t want to depress you. Some things are just hard to say and hear because they are hard things. Here goes:
No matter how bad it gets, your suffering has no meaning or value and I promise that’s not as bad as it sounds
A long time ago I read a summary of a study. Some scientists got together and tried to determine the worst way to die, you know, objectively. They looked at a variety of experiences - burning alive, freezing to death, bleeding to death, suffocating - all the real go-to’s for horrific death. If I were a cynic, I’d probably leave you on a cliffhanger to try to make a little more money: The answer may surprise you! Click to read more. I’m not going to do that.
They found worst way to die is the way most people die - in a hospital after a period of worsening suffering, probably in pain until your last lucid moment. If you’re lucky that end bit doesn’t last very long and it’s a long way off, but most of us are locked from birth into the maximum suffering plan.
There is going to come a moment when you feel the best you’re ever going to feel again. You will have no idea when it is coming, and it may have already passed. There’s no way of knowing. What you do know, is if you’re reading this and you’re sick or dying, your proximity to that moment is probably a lot closer than most other people’s.
When you hit that decline, it won’t be dignified. It certainly won’t be beautiful. It will cause suffering and discomfort in the people watching it happen to you. Some of them might be fucked up for a long, long time for even watching it happen, let alone living with it. It’s cruel, and sad. You would be hard pressed to come up with something worse even if you put a hundred Republicans in a room and told them to go fuckin’ nuts.
How does that make you feel? Mad? Scared? Sad? Like a gigantic piece of shit? Probably. It doesn’t matter, and there’s nothing to be done about it unless you can be the first person to make God read the suggestion box. If you can, I have a few other asks and maybe some questions and you should PM me. That negative feeling is just a little extra suffering and in no way is it a down payment on the suffering to come. There’s no nobility in it. There’s not even a point to it. It’s not a test. There’s no reward. There’s no competition to win. If it has meaning, the implications of what it means are fucking horrifying.
So, stare that in the fucking mouth. Spit in it if it makes you happy. Do anything that makes you happy. Barring that do anything you can to prevent or remove suffering in your remaining life. Barring that make it as tolerable and as short as possible. If you can’t do any of that then you’re out of moves but it’s still perfectly fine to complain about it. The only one that your suffering has meaning to is ultimately you and to a lesser extent the people you care about. You’ll grow to regret every moment you didn’t realize that.
So, what I do is I minimize my suffering as much as possible, which has lead to me reorganizing my entire life.
Your life is going to change and you have to change with it
Getting sick necessitates a change in your priorities and sort of your whole way of approaching life. Small problems get bigger. Your abilities to solve those problems get smaller. The stakes get higher. Even if you’re someone who has things pretty much figured out, and I am not that guy, the life you figured out is over - at least for now and maybe forever. Better to assume the latter. The sooner you can start adapting to your new life the better, because you can’t stop what’s coming.
I’m not going to be mysterious. What’s coming is pain and chaos. Even if you’re as prepared as you can get it’s going to wreck both your shit and your ability to deal with the wreckage of that shit, and it's going to happen at baffling speed, so you have to move fast.
The biggest difference I found between regular life and sick life is time. Time is always a finite resource, but in not-sick times you can generally assume that time can be spent on nearly anything as long as you eat and sleep a bit. This lets you have things like a predictable schedule and flexibility. Nice things to have.
Not so with sick time. Not only do you have less of it but what you’ve got is worth less. You will need to rest more. Things will take longer, even common tasks. Some things you won’t be able to buy with your time whatsoever because your body and your mind won’t allow it. Whereas before your time was like cash, now it’s a Wendy’s coupon book and an assortment of gift cards you left in a drawer with like $5 left on it.
You’re going to have appointments, bills, medical routines, and paperwork that you didn’t have before. That time can’t be spent on anything else and all of it is important. Some days you’re going to be entirely useless because of your illness or treatment. Sometimes you can predict those days, like recovery from a medical procedure, but more often for me you just get bad days or a string of bad days out of the blue. Hope you didn’t have any plans.
“Sure,” you say. “I can just use that recovery time to do things like work on the computer or spend time with my family or accomplish tasks with my brain”. That’s what I thought and I was wrong and so are you probably.
One of my exes was really into Grey’s Anatomy, and thus I ended up watching Grey’s anatomy with her in the hopes of a Netflix and Chill type situation. This was like season 1 or 2 and they’re on like season 20 now, so this was before “Netflix and Chill” was technologically possible, but it’s not a new idea. Anyway, there was a story arc where one of the doctors falls in love with a dying patient, leading to their marriage and his tidy and convenient death. One of this guy’s big ‘nobility in death’ glassy-eyed monologues went something like “I’m a man! Trapped in a weakling’s body!” You see this idea all over - a healthy mind trapped in an unhealthy body. Here’s the thing. You’re not trapped in your body. You are your body. Your mind gets sick too. In a lot of ways it goes first.
When I first got out of the hospital I lived my life in basically three rooms - a bedroom, a kitchen, and a bathroom in a not very large house. In those three rooms I would lose my cell phone multiple times a day, every single day. One day I counted 12 times where I lost my phone, costing me about an hour and a half of my eight hours awake. It sent me into a full blown tantrum.
Before this I had an excellent memory. When I performed I rarely had to study my lines outside of rehearsals, even Shakespeare. I never had to take notes. I could recall not just where I read something but whether it was on the left or right page and where and the shape of the paragraphs on the page with it. I was disorganized, don’t get me wrong. Memory was my organization. So you can see how managing to forget where you put your phone down not once, not twice, but more often than not, is a bad sign.
This diminishing happened to nearly all of what I considered to have going for me. I used to be pretty resilient and even-keeled - now the slightest thing will send me to near tears. I used to be able to understand things quickly. Now I have trouble wrapping my brain around even simple concepts, and I struggle to learn anything new.
And the bad parts about me? They got worse. I could be a little curt sometimes with people if I was beginning to lose my patience. Now I was downright mean even to the people who love and care about me. I could be a little selfish. Now I was a lot selfish - even pushing beyond the general leeway people give you when you’re sick. That disorganization I was talking about before? Now it really started to cause chaos in my life and the lives of people around me.
Heck my brain couldn’t even enjoy the things I used to enjoy before.
I got too sluggish and disinterested to play video games, which is my preferred way to unwind when I don’t have to do anything productive whatsoever. In the old life I would have fucking killed to have eight hours with nothing to do and no expectations or interruptions to obsess over a game. I never had the time. Now here I was where I literally could not do anything else and I couldn’t even do that.
I used to and still do love food and cooking, but thanks to my liver I can’t use any added salt. That means not only no salty or processed food, but no marinades, no cooking stock, no meats like bacon or sausages, very few salad dressings, very few cheeses or baked goods. I forget who, but someone said “salt makes food taste more like itself”. Most food that’s not a fruit or a candy absolutely sucks without salt. There is no way around it. They say you can fake it with lemon juice or vinegar or a chemical salt substitute (which you should absolutely check with your doctor before using), but they’re lying. Wars have been fought over salt. They used to pay people in salt. There is no acceptable substitute. And a symptom of my condition: excessive hunger and weight loss. So, not only does the food suck, but I have to eat more of it and I never feel full of it. Not a great recipe.
Another kicker, I can’t have more than 1.5 liters of liquid per day. Any more and my liver can’t process it in time and it builds up in my abdomen. I don’t mean 1.5 liters of water. It’s all liquids. Anything liquid at room temperature like ice cream, soups, yogurt, sauces, the juice in fruits and vegetables, oils, even liquid medication. To put that in context, you’re supposed to have around 2 liters of just water per day in addition to any other liquid you consume. A symptom of the little parasites eating my blood: excessive thirst. The only thing worse than this limitation is the alternative. Most people have about 23mls of fluid in this abdominal cavity to keep things nice and lubricated. When mine fills, it’s thousands of times that and it needs to be surgically removed by pushing a catheter through my abdominal wall and syphoning it out. One time they drained 8 liters. Think of the size of two gallons of milk and add a bit, or four two liter bottles of soda taped together. Think of the weight of that. Now imagine putting it in your body, specifically between your heart and your pelvis. So I’m always thirsty, liquid is always available to me, and the only thing stopping me from sating the thirst is my ability to control my own impulses and the promise of pain.
I couldn’t focus enough to read much anymore. Forget anything complicated or nuanced like novels or even non-fiction for popular consumption. I could barely read articles. I could barely read fucking Buzzfeed.
Reading used to be my preferred way of getting information because of how efficient it was. I would hate when people would point me to a video to learn something or listen to an opinion. Oh, you could have sent me an essay I could read in 10 minutes but instead you want me to watch a beard mumble into a camera for two hours so I can understand your stance on murdering the poor or whatever? Fuck off. Video tutorial? How about you just write it and show me a picture when you have to. Now I lean on video guides for almost everything. It takes more time and I hate it.
It also doesn’t help that getting sick requires a lot of reading if you want to do it right and avoid expensive mistakes. I mean a lot of reading, often of very technical things, and generally there’s nobody who can do it thoroughly but you. Doctors don’t explain things, or they do but very broadly and quickly. Don’t blame them. Thanks to our healthcare system they have to see a whole bunch of patients every day to remain profitable. Maybe they can follow up with you in two months. We are the happy architects of our own hell.
Then there’s the physical limitations on what you can do, which are more obvious, but a lot of times you don’t realize a physical limitation until you run head-first into it.
For example, I’ve got three dogs. They’re relatively easy dogs. The largest is maybe forty pounds. We have a fenced yard so it’s easy to exercise them and let them out to do their business. They all get along now and play well together. All you really have to do is give them some attention and feed them and they’re happy. One weekend my wife had to go to a trade show, and all the kids were also out of the house either helping her or doing their own thing. I had everything I needed and nowhere to be, but I had a car if I needed it and one of my kids would stop by every day to check in and do some basic things like take out the trash and maybe run to the store. All I had to do was sit around and take care of the dogs that mostly take care of themselves.
Well, one of them got spooked in the yard by something and froze up, and I really needed her to come back inside. I went to go pick her up - just a basic deadlift of maybe 25 pounds - and I could not get up. Not like “I had trouble getting up”. I could not get up. Once I gave up I could barely even get myself back to standing, after which I had to herd her back into the house in my robe like world’s most pathetic cowboy. Getting a dog usually takes about five minutes at the top end. This took about half an hour plus a couple hours of recovering. These things happen all the time.
I’m 35 years old, but because my liver is enlarged, my ability to heal is diminished, and my muscle mass is 30lbs less than it was (and I didn’t have much to begin with), falling down is just as dangerous to me as it is to a 75 year old. This is New England. There’s ice. Falls are inevitable over a long enough timeline. I got a cane to help keep my balance, and I still fell three times this winter and got extremely lucky that only one of them sent me to the ER.
Pretty much regardless of what you have, your condition is going to require more rest than you usually get, but that rest isn’t restful. I’m a side sleeper. I can’t sleep in any other position. This gave me the choice of either putting my organs on top of my liver, pressuring it and making it hurt, or putting the pressure of my liver - a football sized organ in a healthy person, twice as large in mine - on my stomach, spleen, and pancreas. I can’t lay on my stomach ever. I couldn’t even do that before I got sick. So, staring at the ceiling is really the only choice. From there you can get a good peek at that big old Sword of Damocles hanging over your head in the form of your very possible imminent death. It’s a perfect position to meditate on the guilt and shame and frustration and regret. If you are bored of that you can always worry about money because however much you have it’s probably not enough. When I do sleep I usually have very vivid nightmares that are mostly the same every time. Only recently has my illness started being a part of them. I’ll write about those later.
I also get night sweats. The other night I did a little experiment to see how bad they are. After eating my way into a caloric surplus, I weighed myself before bed and then again in the morning. I did not eat or drink or use the bathroom. I lost 1.5 lbs in eight short hours. At the most generous estimate, less than 10% of that loss is metabolism. There’s a bit of water weight lost to breathing and drooling, but not a very significant amount. That leaves the rest of the loss to sweat, which the dirty math says is about 600mls. To give you some idea of what that’s like, go set your bedroom thermostat to 70 degrees. Go to the kitchen and measure out 2 3/4 cups of room temperature water. Go lay in bed and pour it all over yourself while you’re under the covers. Make sure you get your hair and your back. Now try to sleep. See how well rested you feel eight hours later.
Then of course there’s your friend Pain and all his buddies that he shows up with whenever he likes like Malaise, Itch, Hot and Cold Sensitivities, and Nausea. Luckily there are all sorts of medical solutions for these things, and my condition prevents me from utilizing any of them.
Gone are the days when you could show up to the doctors office with a headache and walk out with a 30 day supply of Oxy. I got shingles as a kid, which I know is a little weird. It itched and maybe hurt a little but I don’t remember it being more than minor, probably because they put me on an adult dose of Vicodin that they encouraged my mother to crush up and add to apple sauce.
Now I have to beg and plead to get even a week’s worth of the lowest dose of Tramadol, which is one of two controlled meds I’m allowed to have that even come close to touching my pain (the other is morphine so I’m definitely not getting that). I understand the hesitance of doctors to hand out narcotics, times being what they are, but if I were a pill chaser faking a diagnosis, then give me the last Oscar and shut down the academy. All other analgesics and anti-inflammatories hurt my liver function. The most I’m allowed day to day is less than a children’s dose of Tylenol, which is worse than nothing. Same goes for effective meds for pretty much every other symptom. I had to disabuse myself of any notion of medicating my way out of discomfort.
It might be a different set of limitations for you, but they’re going to be there.
Now, not all of these things happen at once, and they don’t always move in one direction. You’ll have good days and you’ll have bad days, or good days in some areas and bad days in another. Some days you’ll be able to do physical things but not complicated mental things, sometimes the opposite. On the great days, both (although you might mistake this for getting better, which can feel really hard if you regress again). On bad days, neither. Generally you will never know what you’ll be capable of on any given day until you wake up, and even then that could change. Between everything, it’s going to essentially blow up your normal way of doing things all day every day.
Keep in mind I don’t even have a particularly abnormal or terrible illness, relatively speaking. For liver failure this is pretty routine. For long-term tick-borne illness this is maybe a little worse than the norm. I can still walk, feed myself, dress myself, and now even pick myself up off the ground when I fall down. If I dress in baggy clothing you might be tricked into thinking I am merely a victim of fashion or amphetamine addiction rather than illness. Other people have it worse and thus have a harder time adapting.
Make no mistake though, you need to adapt, and even learn how to adapt, and even then you’ll probably just be mitigating the damage and entropy. You’re not going to want to, but I promise it’s a lot better when you do.
Make a clear decision to adapt as fast, economically, and as best as you can because you can’t ignore this thing.
I know this breaks the rule of “good, quick, or cheap - pick two” but you need to do all three. You know yourself better than I do and it’s so nuanced that I can’t really give you any specific advice. I’ll just tell you how I did it.
First I made a choice.
After moping and denying I was seriously ill for too long after getting out of the hospital, and following a string of very very bad days, it became apparent I couldn’t just sit around and wait this whole thing out, which sucks because in regular life I often found that the best approach to many problems is just to wait them out or not take them seriously. When I have had to make a decision in the past I always would take some time to reflect on what the choices actually are, not what they appear to be. Almost every time I found I had fewer choices than I actually thought, or even no choice at all, which is fine. Sometimes it would be a Monty Hall problem, which I know I’m using wrong whether we’re talking in the context of Dungeons & Dragons and Statistics (apologies to Marilyn vos Savant, the woman with the highest IQ ever recorded in a person. You should definitely look her and the problem up because it’s fascinating). I mean Monty Hall as a situation where you do have choices but their outcomes are so equally unpredictable that there is no meaningful choice, which is the same as having no choice.
So I thought on it, and unfortunately I had choices, two of them, each being mutually exclusive and neither of them good.
I know I’m sort of hinting at it here, and this is an essay about how to cope with illness and dying, but just to be extra safe - if the idea of me being in distress would bother or worry you, or you would rather avoid frank discussions about death and suicide, you should skip this bit.
It became apparent very quickly that not doing anything wasn’t a sane choice. I’m not sure who said it and I don’t want to look it up for fear it was some self-help guru or tech bro, but hope is not a strategy.
At the time, my real diagnosis was still unclear to me, but what was clear, or at least seemed clear at the time to me and my doctors, is that without a new liver I would almost certainly be dead within a year or two and it would be painful and expensive, but less expensive than a transplant.
If I committed to the transplant, made it on the list (not a guarantee), and made it to the operation there was a ten percent chance I would die on the table, a slightly greater chance I’d die within the first year, and an almost certainty that I’d be dead within 20 years. If the surgery succeeded, it would take me 18 months to even recover enough to be anything more than a burden. It would absolutely ruin us financially even if we had very good insurance for the rest of my life. I would have to take expensive immunosuppressants to keep my body from rejecting the new liver, which could make common illnesses fatal. That choice would be high risk and low reward, if there was a reward at all, but it allows for a chance at living a life, a diminished life but a life.
Now for the only other sane choice. Choosing not to pursue the transplant would be choosing to die painfully, badly, and expensively. If I was going to die anyway I’d suffer less if it happened faster. Plus, I know my family and, and they’re not leavers. Some spouses and families leave people during illness, and I understand that choice. I’m not so lucky. Mine would stick around through everything no matter what it cost them or how it affected them, even if they grew to resent and hate me, even if it ruined their hopes for their future. My family would suffer less financially and wouldn’t have to put their lives on hold longer than necessary to take care of me and mourn me if I sped things up a bit.
They’d be sad whether I met my end naturally or artificially, but they would be objectively better off by not having it all drawn out. It would be difficult. It could be considered selfish. I would be robbing them of their opportunity to choose for themselves. They might hate me for it, but ultimately they wouldn’t be hobbled by debt and less the one or two years where they’d have to give up almost everything taking care of me. It sounds rough, and it is impolite to say, but it’s better to be sad with time and money than it is to be sad without either of those things. We’re taught a lot of false things in the service of power and capital, and I don’t pretend to know them all, but I do know that one of them is that you can bootstrap your way out of anything with enough determination. If it were possible, I’m sure they could do it, but some things are merely outside the scope of the possible.
I could either end my life quickly and messily - we have firearms in the house. If I took that route I might be able to make mourning easier on them by killing a bit of their admiration or affection for me. Or I could secretly take steps to accelerate my illness. I could just take some more Tylenol than I should and work my way through a couple handles of liquor and it would look the same as my illness taking a turn for the worse despite everyone’s best efforts. Again - bad, morbid, selfish, and in most cases irrational, but not all cases and not in this one.
So two sane choices. No good ones. One limiting suffering but extinguishing the possibility of life, the other allowing for the possibility of a diminished life with more suffering almost guaranteed. Postponing the choice could only really make the outcomes worse, so it had to be done. I needed to do something sane.
Nobody really knew I was making this choice except maybe my wife. Since you’re reading this you know what I chose. I’m still not entirely sure why I chose it, or if I am sure I have no idea how to communicate it other than that death is scary and it is probably better to be alive. I’m very glad I made that choice now because its seeming like the doctors were wrong and I may not need a transplant to be alive after all - an improbability and near miracle - in no way predictable. I got incredibly lucky and that’s it.
I hope that you end up making the same choice if you have to make it. I don’t know your situation, but if you’re contemplating the opposite you ought to be really, really, really goddamn sure you’re not just having a dark night of the soul. The only reason you should be contemplating this choice is if you are very, very as sure as you can be that there’s something outside of your brain that’s killing you. Depression is not one of those somethings. Don’t do it for that.
I didn’t have to tell my wife what choice I made. The morning after I chose to try to live, she intuited it because I started at the business of retooling my life and habits towards that choice. I made a list of goals and priorities, most of which are too specific to mention here, but at the very top of the list was to give my brain and my body the best possible chance to not die before the operating table and to live as full a life as I could in the meantime. I could worry about after the transplant when and if I woke up with the new liver, for now I just had to get there. To do that I had to learn to do a lot of things that I never had to or wanted to do before, and unlearn a lot of things too.
First thing was just to slow down the creeping chaos. To get my mind and body ready I had to make sure they would get what they need when they needed it. Meds needed to be taken on time. Appointments are expensive to miss and difficult to reschedule. Bills get more expensive when you don’t pay them and you don’t always have the ability to pay them so you need to triage them. Paperwork for some reason takes forever to process, but it’s often a barrier to the next bit of progress so you need to absolutely minimize the time it spends waiting on you to just fucking do it.
Those minor inconveniences like forgetting something in the car become a lot less minor when walking hurts and if you slip on the ice you die. Minor annoyances become absolutely unlivable because by and large you’re confined to the place you’re recovering and pain makes you way less patient. For example, I just had a minor meltdown because here I am trying to write but a dog found a squeak toy and I have nowhere that I can go that he can’t go too and my brain barely works when conditions are perfect. Now, I had the opportunity to prevent this catastrophe by spending 5 minutes picking up the house and hiding the noisemaking toys before I got started. I didn’t and now it’s going to take me like 40 minutes to get back in the zone and also every living thing in the house is mad at me for overreacting.
Remember how I said I wasn’t organized because I relied on my memory? That I didn’t have to ever take notes? Well the thing about not needing them is that I never had to learn to take them until now. This is the living, waking version of the student’s nightmare where it’s the day of the final for a class you didn’t know you were taking and you need to ace it to graduate. Or if you like, it’s the actors nightmare where it’s opening night and you never rehearsed and you don’t know your lines. Pick whichever one works for you.
I thought this would be relatively simple, but that’s because I’m dumb and I think I’m better and smarter than everyone who has to do these things. Not true. You grade-grubbing try-hard nerds have my infinite respect and admiration for as long as I’m alive, and even after that I’ll spend half my epitaph apologizing for how wrong I was.
Do you know how hard it is to learn to take useful and complete notes as an adult? My thoughts don’t occur linearly. I go back and forth. I edit as I go rather than doing drafts. I am in here editing after this essay has already been published in fact. What the fuck do you do if you have to add a note to existing notes but there’s no space to add them because you didn’t leave enough room> How many different sets of notes do you keep? Should I have one notebook for each of my doctors or keep them all in one place? Should I spend the time transcribing them? What if I can’t read my own handwriting?
Same goes for you organizers with your gorgeous clutter-free houses, cutely relying on knowing where something you need should be rather than just remembering where you put it. I used to think having a tidy house was arbitrary, and it is, but it works and I wish I had learned to do it. Do I sort things by purpose or how frequently I use them? Where do you put your clothes that aren’t clean but aren’t dirty enough to justify washing yet and how in the fuck is it not a chair? If I have an hour is it better to catch up or plan ahead?
I’m still figuring all of it out, but the only way I’ve managed to slow down the chaos and dig out from it a little is through routine and discipline towards these things. I actually get more and better rest and have better flexibility if I spend time doing the un-fun things I used to hate doing. Now I’m obsessed with it, and not just for my mental health and finances and ability to be useful and present and pleasant for my family, although all of those things are plusses. It’s safer for my health.
I take all of my meds at the same times every day and in the same order. The other day I swapped out a dosing spoon for one of my liquid meds. It was hard to read, and so rather than taking three teaspoons of the stuff, I took three tablespoons. This is the medicine I take to get the ammonia out of my brain. It is also a very powerful laxative. So, if you’ll forgive me for yada yada-ing my way through the details, now I take all of my medicines at the same time, in the same order, with the same dosing tools.
I developed a very solve-the-problem-now mentality, even if it means stopping something I’m enjoying or causing myself some discomfort in the now. Even if I know I won’t be able to get back to that thing any time soon. This is a big change for a chronic procrastinator. I woke up this morning too early, like 6am, and reread this post. I noticed some errors and small ways to make this essay better. Rather than letting it ride or dealing with it at a more reasonable hour I got up, put on enough clothes to make myself warm, ate a bowl of frosted mini-wheats (which surprisingly have barely any salt in them( to make sure I wasn’t distracted by hunger, and went about editing all the problems out. Here I am an hour and a half later, and I’m tired, but now I can rest not worried about being embarrassed by missing words and poor clarity.
All of this discipline and routine has helped, and the sense of accomplishment that comes with keeping it adds a bunch to the ‘reasons to not die’ pile. Plus my wife loves me more for it which is good because otherwise I’m needy as shit.
Speaking of which, a big part of keeping on the trying to not die track is, not surprisingly, having a will to live. I mentioned earlier how my illness destroyed my ability to enjoy or even do pretty much everything I used to like doing. I knew myself well enough to know if I didn’t find something to pump joy into my noggin I would lose my motivation. Grand concepts like living for my family or taking pride in beating this illness are great, but it doesn’t change the fact that being sick is very boring.
I knew I needed something to do with my time that wasn’t just maximizing my chances of staying alive and comfortable with robotic efficiency, and I especially needed something to do with my time regardless of how I was feeling. So, I deliberately started looking for things that I might even have a chance at enjoying, even if that something was just fantasizing about enjoying it and researching it.
Luckily I’ve always enjoyed learning things, which you can still technically do as long as you’re awake. It might be inefficient, and it might not stick, but it’s always been at least possible and I’ve always enjoyed it at least a little. Don’t confuse this with me being a good student. I just liked knowing things. All things. Even useless things. So I got to it.
I don’t remember what in particular brought me down this particular avenue, probably nostalgia and longing, but I remembered that when I was younger - like before college younger - before I poured myself into theatre and work and politics and all the other shit - I used to genuinely like being outside and active.
I was a Boy Scout, and a pretty good one. I can still recite the Scout Oath and Law from memory (plus I genuinely think that the Scout Law is the best mission statement ever written). I understand there are problems with the Boy Scouts and legitimate criticisms to be made, but I never experienced anything like that and it was pretty much all upside. I learned how to lead and to be self-reliant. I learned how to not die in the wilderness, which is very similar to how to not die for other reasons. Plus they give you a knife and send you to play in the woods with very little supervision, which is cool as shit and appealing as hell when your life is confined to three rooms and you rely on others for nearly everything. I wanted to capture that feeling again.
I also knew that if I did live I didn’t want to go back to how I lived before. I know this seems counter-intuitive for someone who just said he loved being a Boy Scout, but I was always a bit of an anarchist with a healthy disdain for authority. That was mostly to feel and seem cool, and was mostly theoretical and applied only to politics. After real life, though, it solidified and expanded. I grew into it, not out of it. I was absolutely taken advantage of at work multiple times by pretty much every boss I’ve ever had, and especially at my most recent non-profit gig who I want to specifically mention was the Seacoast Repertory Theatre located at 125 Bow Street in Portsmouth New Hampshire (who are definitely reading this right now so hello, get fucked and worry hard). I got fucked by my landlord, pushing me out of a town I had invested a lot into trying to change for the better. I threw myself repeatedly into the brick wall of politics nationally and locally to very little effect. I felt all the small feelings of being at the mercy of doctors who I had to hope cared enough to know what they were doing and cared enough about me to apply it because they’re the gatekeepers of treatment and medicine. If they’re not, insurance definitely is. Even at home, minding my own goddamn business, neighbors would try to create some kind of pecking order and system of authority that almost always was a form of me doing what they wanted when you looked at it with even a little bit of scrutiny. There’s not a hierarchy or single bureaucracy I ever participated in, voluntary or involuntary, that I feel like gave me more than I gave it. I definitely wanted to get self-reliant enough to minimize my need to participate in them. The last time I felt like I developed that skill was fucking around with a knife in the woods in the Scouts.
Obviously I couldn’t get outside like that in the same way, things being what they are, but I could think about it. I could take baby steps to get there. I could look forward to it. I could learn about it even if I couldn’t do anything else.
That lead me to reading about doomsday prepping, foraging, wilderness survival, and homesteading, which are all just different forms of radical self-reliance once you subtract the weirdos and politics. A reliance on immunosuppressants for would make that sort of extreme adventure and survival pretty much impossible for me because those drugs expire and you can’t make them on your own. It’s the same problem insulin-dependent doomsday preppers have. But there are diabetic preppers anyway, spending tens of thousands filling their cellars with food and water, thinking they can make insulin in a bathtub (they can’t), so why not.
Then, when I found out my illness was definitely caused by a tick, revenge got added to the mix. The opportunity for real revenge is rare, and usually harms you nearly as much as you harm the person who wronged you no matter how in the right you are. This pinhead-sized motherfucker I could definitely kill and be better for it. He’s the one who made my world small. He’s the one who made me small. He came into my fucking house and made it unsafe for me. He’s out there in his house in the woods. I intend to go into his home and try to kill him.
The tick came in on a dog from the yard, probably, or barring that maybe a mouse. Anyway, my yard was a perfect home for the thing that tried to kill me, so I decided to take it back. Every time I was physically capable I would rake out leaves, sometimes for a minute, sometimes for hours. I burned wood to create wood ash that I spread all around the edge of the property because it either repels ticks or kills them. I started thinking of ways that I could use the space I took back from the ticks. Soon I was reading about gardening.
So yeah I garden now. That’s given me a bunch of compost to fertilize the soil that grows my will to live, and I’ve been able to pursue it in tiny bites, and now big ones. It makes me feel good, it’s good exercise, and it scratches all those itches. I have a fourth room in my life now, one where I planted seeds under lights to get them healthy enough and ready enough to survive outdoors. The grow lights go on at the same time every day. I measure PH and soil quality religiously. I give them enough water to live but not so much they get sick. I give them the medicine and nutrients they need to survive. I started with nine seeds. I have about thirty plants now, some of them showing their first flowers, and hundreds of seeds either planted or waiting to be. When they get healthy I am going to put them outside, a little bit at a time to get them used to the discomfort. I am building a fifth room in my life for them. One with no roof. One with raised beds where the ticks used to live, above the poisoned soil that was there before. They’re going to live happy little lives there, and I’ll turn them into food or things for Kathleen to put into what she sells so she doesn’t have to work at a job she hates to get what we need to live. I’m going to sit out there and watch them while I write my cute little blogs that maybe people will pay me to write. My next subscribers-only one is actually about gardening. Goddamn have I created a metaphor.
I never even thought I might like gardening. It never occurred to me. I suggest you find something that does that for you.
Your plan is going to have to be yours, but if you get organized to live and find a reason to do the hard work necessary to not die, it makes the rest of the plan easier. The suffering is still there. It’s going to be there. It’s sitting with me right now. But I have moments where I can forget about it. I even have moments where I am genuinely happy. Maybe hope isn’t a strategy, but it’s nice to have, and these steps worked for giving a bit of it to me. I have enough to say I hope this helped.
Again: don’t take advice from me. Good luck. Send this to five people for a chance to win an all expense paid trip to Vegas. Or just subscribe and trade me some money for maybe some enjoyment in reading what I write. No hope required for that.