I'm back which should be obvious unless I decide to fade away again before even posting thing entry which would mean that I'd be back later. That didn't always seem so certain when I was in a bit of a slump. There came a point a while back when I decided to put my faith in some people and things that helped me get through some bad times. With the exception of Melissa and some family, most of those people have failed me or needed some time off to any degree. You can guess what's coming next because it's predictable. I decided that it was my fault because decisions may have been made because of things I said or did.
It's okay. I'm going to try to stop putting so much pressure on people. No, I'm not taking the blame or not all of any blame that might exist. I've learned that there is a lot of pressure generated just being in the same room as a frustrated perfectionist. One of the worst ways a frustrated perfectionist like me can inflict harm on others is with the old "don't expect you to live up to my standards" bit. I may mean well because I'm most often telling someone that I realized my "standard" would be literal perfection. Since no one can do perfect, exempting you from my supposed standards is an attempt at kindness that fails horribly.
Here's a belated attempt at keeping this short. Maybe it looks like I'm judging you all the time but I don't mean to do it. I grew up knowing that a critical eye was always on me or very close. I learned to live as if I were under constant surveillance because it was true far too often. I'm just learning to let that go now. Having loved ones who are not seeking to judge me is a luxury that I appreciate more than I can express.
These have been the worst of times in a lot of very obvious ways. Melissa and I were only married very briefly before I got sick with my Arnold-Chiari Malformation. Sometimes, I think I spend way too much time trying to play down how serious and complicated ACM is. I didn't simply have brain surgery the way I simplify it. At the time I had the surgery the probably saved my life very directly, there were possibly a dozen specialist practices capable of handling Arnold Chiari Malformations with complications. One or two of the top specialist neurosurgeons in the world working together found my case challenging. It is quite possible that it took the top two Chiari surgeons with their support staffs to get me to where I am today. This is not bragging because I was unconscious for the hard parts.
This is an explanation for why I am so grateful for where I am in life. More than one person has died from this over the past week alone. Scratch that! More than one child has died from this over the past week. I choose to avoid seeking out explanations for why others die mostly because there's the awful truth concerning why some people die. I got the top team at the top of their game despite having done nothing to deserve this which means someone else way back when got someone else. Do I believe that the other doctors caused the deaths? No. I believe that I got lucky and I've processed those guilty feelings already.
I've written a lot about the symptoms that I suffer so often that I expect you know them pretty well. This isn't my pain blog so I'm going to concentrate on some other things. My job is to find the silver linings in the black clouds. I looked at my life at a particularly chaotic day with my life at a typical low day but still in the reasonable range. That's when I put on some music and a cat jumped up on my lap.
What was so bad about this? I found myself enjoying it. Obviously, I don't enjoy intense pain or diminished mental capacity so why should the occasional perk make me feel so much guilt? The pain is there all day, every day. It is a weight crushing me. I'm not on trial but serving a life sentence. When I think about the pain and other symptoms, I feel like less of a freeloader. I can't work. I can't even play much of the time. This post was supposed to be a one day thing and this is day three or four. If you know me, you know how important writing is to me.
So, there came a day when I realized how my lack of direction was hurting Melissa and I decided to find things I could change. Mostly, I found the best changes to be in matters of attitude. Silver linings, anyone? Let's start with writing. Sometimes, I fret and blame myself for spending so little of my available writing time on writing. Then again, I have several writing projects started and substantially completed over the past few years. My writing output has gone up while I've been sick and I have made some small difference in a life or two.
When I looked at my symptoms, I realized that there were two layers to each of them. First, I had the unpleasant symptom and then had the equally unpleasant feeling of guilt about failing to overcome the pain, dizziness or whatever. My doctors and I made all sorts of incremental improvements with Melissa's help. In fact, I provided a large amount of new information about the new, super-scary infection and the prescription knocked it right out. Why did I wait so long to ask for help? As Dwayne Johnson always told us, "It doesn't matter why I waited so long!"
Officially, the paperwork will tell everyone that I am disabled because it remains true but my feelings about it all have changed. I am in very early retirement as far as I'm concerned. After struggling for my important wins that earned me freedom from my parents and the lifetime of trying to gain their approval, I have retired from the wars. Instead of trying to meet standards, set standards and evade or impose them on others, I am retired. My new goal is to glean what joy I can for my loved ones and me without spending all of our money.at once.
Maybe Melissa and I can live up to my memories of Grandmom and Pop Pop in the Crystal Beach Manor Years. My Uncle Ray, the supposed Grinch who never stopped loving his family, saved every penny that he could so that he could retire relatively young and still able to enjoy life is another excellent example. Gruffness can be justified pride at achieving the "Stapleford dream" as a pared down/focused version of the obsolete American dream. I'm ignoring rumors, stories and family politics here to put everyone in his or her best light because that's how I choose to see them. My older cousins worked hard and always had a smile for me.
If all goes well, Melissa and I will go out to dinner at the diner for eggs. It will be a short trip with minimal pain, tasty food that might not be expensive seafood but will taste just right and conversation with my beloved which is something we've pretty much had to schedule since her promotion. Scarcity is a big part of making something even more precious. I could get a screaming headache or fall because I got dizzy enough to kick away my own cane but so what?! These are all parts of life now.
It's the best of times and the worst of times. I've been making the best of mixed situations for much longer than my worst critics would ever believe. I've had my bad times when life has nearly crushed me but so have you. I've gotten back up every time just like you have. I've also been tested to my limits just as you have. In fact, I'm at my blowout point already twitching for the third day in a row now. Time to post this and hope there's no randomly imbedded (insert random joke here) stuff to insult friends and family alike. That might not have bothered me years ago but I'm retired now.
