You are not a burden.
I found a post on Reddit this morning from a woman who had become disabled a few years ago. This woman, whom we shall call the Doctor, is someone I feel a kinship with. I know, I feel a kinship with all of my disabled kin, a kinship of the defiant, but the Doctor was saying something openly and honestly that I think would resonate with many disabled people, myself included.
Caz and I built a life together, one that I treasure and to which I contribute. We had plans to buy a house, to build a new life somewhere, and I had my doctorate, was building my experience, and I’d started work at the University, dividing my work time equally between the University and my work as an Educational Psychologist. I was at the height of my skill, of how I could contribute, I was confident and I knew myself and what I wanted.
And then I went numb in one leg.
Everything I thought I knew, whom I had built myself to be, was profoundly shaken. I’d be at work all day and as soon as I got home I’d be too fatigued to do… anything. I’d try my best to be the person I had once been, but I’d stumble out of meetings, my feet wouldn’t behave when driving, I’d be in too much pain to sleep and then I’d have nothing left to manage my work much less my life at home.
My social life was one built for a person with more spoons than I now had. My work involved a huge amount of walking, sitting on tiny chairs in preschools, rushing from one school to the next, engaging in difficult meetings all day with parents at the limits of their emotional wellbeing. I’d arrive home and we’d have d&d scheduled in person with friends that I was running, or we’d plan to drive 40 minutes to dinner and the cinema, or we’d go bowling, or loosing arrows. I’d overspend my energy resources and pay for it in pain and fatigue, I’d be sad and frustrated all the time, and I’d easily see the impact of that on the people around me.
It took me a long time to understand what I had done. I’d built a life as an able-bodied person in the world, a life that did not accommodate the disability I now had. I had to change my plans, change the life that I thought I was building into something that could accommodate my disability fully. I needed to change my job, to work more from home, to get a wheelchair, to cook shorter meals, to be happier at home in front of the TV resting, to ask to be a player in d&d rather than run it.
Each of these changes featured a change in my self concept, a warping of the mirror in which I saw myself, but it also had a huge impact on the people around me. I saw Caz, a woman I have loved with all my heart for most of my life, change how she saw herself, what she expected from our life together, what she could hope for, what she predicted our future would look like.
I’m wiping away a few tears which I’ll blame on the music… stupid Arcane soundtrack.
Somehow… with coming out as trans, with transition, with what I want out of life, with an MS diagnosis, it feels like this was all my fault.
And that thought is followed by another, that the person she is with, the life she now inhabits, is not the life she anticipated. And I begin to wonder whether she would be better, happier, without me.
The Doctor, I see you. You are not alone.
But when I look at Caz I remember something else. When Caz is sick I do for her as much as I can within the life that we have now built, one that better accommodates my disability, and those actions are not burdensome to me. It is the same as when I was in Vienna and my new friends would have moved buildings with their bare hands to include me. The actions people take to be in your life are not burdensome because underneath it all there is a feeling that drives the action. If Caz became disabled, our life would become weird real fast, but I would do the things, organise the support, make the changes… move buildings with my bare hands… and the sweat on my brow, my tired arms, that I can barely stand from the work, they wouldn’t be evidence of some burden, because they would be labours of love.
The world often invites us to view ourselves as burdensome. But please, the Doctor, listen to me carefully as I say this, and know that I’m saying it to myself just as much as I am to you.
You. Are. Not. A. Burden.
Regardless of how anyone makes you feel, you are valuable simply by your being here. Your unique perspective and insights, when you are kind, when you make someone laugh, when you care about someone, you shine a unique light into the world and it is a little brighter for your presence. This is the case for all of us. For me, I’ve been engaging in acts of kindness, at least as it is within my power to do, and simply thinking about someone, acting in a way that makes their day just a little better, adds to the world in a way that is so very rare. This is but one of the lessons that Caz has taught me, as she has made my disabled ass a better person than I was before I became disabled, before I started to listen to her lessons.
You are not a burden. I am not a burden. And the things people do for us to be able to have us in their lives are not burdensome, they are the acts of love that keep us close. I would act to keep someone I loved close, and far from a burden it would be a chance to show how much I love them. And with the depth of my love…