Hello dear reader(s)!
First of all, I would like to apologize for my absence during this move. I figured I would be able to check in and maybe make a post or two while I was resting from all the work, but I haven’t even had the energy to do that. I am extremely sore right now. This move has been a serious reminder that no matter how much I want to be better, I just am not there. Still, thanks to my incredible family (especially my dad), I have most of the things here that I need. Today I attempted to unpack some of those things and I managed to get about a quarter unpacked of what an able-bodied person might be able to do. I was pretty proud of myself for that…but then tonight I realized that there is absolutely no way I will be able to do anything for the next 4 days or so. I can barely type right now. The worst part, is that I have been getting like 10 hours of sleep a night since I got here, so I’m not exactly sleepy, just exhausted.
But enough about my move, I think it is time to get to the meaty filling of this post-type-thing. There are things I have learned about myself because of my whole cancer/complications aftermath that I thought may apply to those who have not faced death and disability. So here they are, made special just for you:
- Ain’t Nobody’s Business Nobody’s Business closed down almost a decade ago. Something about poor customer service coupled with supply issues. I can’t remember the entire story, but I think the Wall Street Journal likely ran a piece on it. But really, life is way too short to care what other people think about things that do not affect them. There is something about facing your death that really crystallizes the concept that it is okay to do what makes you happy, so long as you are not hurting anyone else.
- Find the Workaround When I was at my weakest, I couldn’t even put on my socks. (I still have to be sitting down on something of medium height to do that.) An Occupational Therapist came in with all of these simple gadgets to help me out. There was this flexible piece of plastic in fabric with straps on it where you would put your sock, and it would hold it open, then you would put your foot in by holding these straps and dangling it in front of your foot, then you would pull the straps up, the contraption would slip out, and you had a pulled up sock without reaching down. I also had an extra long shoe-horn and a little trigger grabber thing. (I still use the grabber thing all the time, because bending down and getting up again can still be difficult for me, plus it is good when things fall behind furniture.) Anyway, even the healthiest of individuals may not be able to do everything they’d like. But there is usually a workaround. A contraption, a method, a roll of duct tape and a chewing gum wrapper that you can MacGyver your way to getting done what needs to be done. Find the workaround.
- Know your limits Don’t bite off more than you can chew. This one hit home big-time tonight. I’ve always said that I will take advantage of the energy when it comes, but even in doing that I realized that I can still overdo it. I’m going to be down for days. I can feel it already, and I didn’t do all that much. This has been a serious wake-up call to the fact that I am still very much disabled. I try to push it, but I pushed way too hard. I just hope I don’t end up needing medical attention as a result. (Although I couldn’t see why, it isn’t like moving more than I have the energy and endurance for will affect my blood counts or cause an infection, knock on wood.) Anyway, I’m not back to able-bodied status yet, but even the able-bodied have their limits. And while it is okay to push a little, you don’t want to end up down an entire week or have a serious problem because you tried to be Batman.
- Recognize your damage So yesterday was St. Patrick’s Day and I really really really wanted to go out for it. I was very tired from the move and fading fast, but I thought I could pull off just a quick stop in for a Guinness (just one as I am not really supposed to have more with my liver numbers) and was pretty excited to meet my friends at the pub where my wife and I got engaged. And then it dawned on me how packed it would be. Now, you can’t go your whole life avoiding people, even when you are immunosuppressed, but to be in a crowd like that is just asking for a hospital stay and another battle with sepsis. So we cancelled. Just a dumb idea. That is my damage, (well, just one aspect of my physical damage, but you get the point), but even “normal” people have some sort of damage. This is a bit like knowing your limits, but your damage doesn’t necessarily have to limit you, you just need to recognize it so you know if it will, if you can use a workaround, or if it doesn’t apply to the situation at hand.
- Get off your high horse But maybe use a step-ladder, so you don’t fall and hurt yourself. Seriously though, do you want to spend your limited time on this Earth thinking that you are always right, others are always wrong, and you are superior? What fun is that? As you lie on that deathbed with your family gathered around, are you going to regale them with stories of how you told off that person in the internet comments? Are you going to sit back and smile at the time the actions of others riled you up and got under your skin for doing, looking, acting, or being something that isn’t what you would do, look like, act, or be? I’m not saying you shouldn’t attempt to make the world a better place, I’m not saying you shouldn’t state your opinions, and I’m not saying you shouldn’t call people out for what you really believe is wrong. But if it isn’t hurting someone, I am saying you shouldn’t let it get to you.
- Life isn’t always good I spend most of my time sick, anxious, stressed, exhausted, and stuck in an obsessive thought loop. But sometimes…sometimes I don’t. Even without the catastrophic illness and resulting damage, I bet your life isn’t always good either. So try your best to pay attention when it is. Life isn’t always good, but sometimes it is amazing.
I think I may continue this post-type-thing another day as there are still many other things that I think the perspective of someone who has survived something they weren’t supposed to, can help those who haven’t had to. I’m too exhausted to list them all now, plus, this is a post-type-thing, not a novel.