I realized something this week.
Balticon was our first major social outing in years and years. Most people have outings like this every few months. Disability makes them difficult for us.
Solitude is safe. Solitude means we don't come into contact with people who are having full lives. We can fold inwards and pretend we're happy the way we are.
But I'm not happy. I'm deeply, achingly envious of people who can go to conferences and conventions every month or so, without having to worry about how far from home they are, what they'll do if a migraine or arthritis or whatever should show up.
When one member of a family is disabled, the whole family is disabled. I've come to realize this.
I wonder if this isn't behind my wife's apparent reluctance to do anything to amend her life. I think she feels safer wrapped in the cocoon of her disability, rather than go out and be in the world. I'm beginning to think that this inwardness is killing her.
And I don't know what to do about it.
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Sometimes I think it's hard to understand is how difficult it can be for us to request accommodation from the outside world.
Getting out is physically difficult, made emotionally difficult by the feeling of being a burden. It's especially hard if chronic pain is involved, because one small thing can jar us unbearably and then we must withdraw in order to recover. Not everyone is willing to allow us that. There is frequently a clamor of "Just a little bit longer!" when we honestly can't take another minute.
I have a hard time making friends because I use assistive equipment under certain circumstances. I need extra rest. I need medication. My condition can make me unreliable because it acts up at random. I have speech and memory issues sometimes, especially if I'm tired. Not everyone has the patience for all of it.
To be honest, I reserve all of my energy for facilitating my son's social life, and I'm so tired at the end of the day that I rarely miss having one of my own.
Yes, but I think in spite of all that, we need to keep trying. It's too easy to just wall ourselves off.
I find that if I plan for solitude, and seek the pleasures to be found therein - reading, music, movies, napping, writing and journaling, etc. - that I am content and have more energy and less pain. I view those days and weeks sometimes as 'banking' reserves of energy, patience, perspective and reduced inflammation and wear and tear. And what do I use them on? I plan trips, outings, visits, activities. Every month we do a minor one - the zoo, dinner and a movie, a weekend trip to someplace a few hours away. Sometimes, maybe once or twice a year I plan a bigger outing. I find that if I plan carefully the logistics, and lay them out for my family, then they are prepared and have a backup plan if I get knocked down. I plan to lie down for an hour in the afternoon, or to spend just half a day, or to find a comfortable place to sit and read while they run about more actively. I am usually pretty beat and hurting by the end of it, but the planning and setting of expectations and contingency plans make it all work out so that while we aren't like people without disability, we aren't without travel, activities, outside the cocoon lives. It seems to work. And, in this light, being contented with the things solitude does offer, and knowing that strategic withdrawal for periods with a goal in mind and taking pleasure in the solitude allows me to keep open the lines and experiences outside the cocoon, solitude isn't dysfunctional. Hope I said that well enough to make sense. It is so much better for me than it was when my instincts told me to withdraw but I fought them because I felt they were destructive. My instinct was good, I just needed to work out how to follow them well.
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