Autism: The Battle for Life

04 Aug

This has always been who I was. It is not some disability that came on suddenly, and people can say, “Oh, that’s a shame,” and accept it for what it is. How do I explain after so many years how I just can’t keep fighting anymore? That to accept who I am, I have to give up that battle to be normal, and instead spend my time learning how to live?

It feels weak, to apply for disability. That is what I did today. I drove out of town, and I hate driving. I drove into a busy city with people everywhere. The panic started in the night, when I woke up at 3am, worried about the day. I couldn’t get back to sleep after that. By the time I got there, I couldn’t feel my hands. My head was spinning. I wrapped my arms around myself as I waded through the crowds, like a shield to protect me against the invading army. It hurt, and I was afraid.

I was nearly an hour early for this appointment, but the panic of being late was too much to bear. It was my plan to park in their parking lot – those were the directions I was given – but my mind went back to that other appointment, and I couldn’t do it. I turned right, instead of left, and hoped my car wouldn’t be towed from the grocery store parking lot where I left it.

A new building. A new office. A new person to meet with… so much to overwhelm me. But I went in with my notes, still fresh in my mind. A sample copy of the questions asking how I am struggling. As she asked, I could answer. I could see my written words in my mind as I spoke – and it helped. It really did. I couldn’t look at her. I looked at the door beside me. It was painted blue. I like blue. I really like blue. It is calming. It helps me think. Sometimes it lets me feel sad, or lost, or alone – but not so alone. There is the blue, and I like it.

I couldn’t look at her, but I could answer her questions. For 15 years I battled to stay in work – but though they may not see it, I struggled all along. 15 years I worked, but not all of them. Most years I didn’t make the full year. Sometimes when I felt ready to crash I would tell people I needed a change, and move to something else. Yes, I spoke of my failed adoption – but do they know that was my failure, too? Do they know that after the kids were moved, I couldn’t get out of bed for 3 months, and 6 years later it still brings me to that point?

Broken mask

Do they see how even though I was working, I was broken just the same? That I was hiding, crying in the back room… wipe the tears, take a breath, smile as you talk to the guests. One minute… two minutes… please let this be over, I am going to break again. Cry, breathe, move on.

It is hard to share what is inside. They only see the surface. “You stayed in that job for a while…” I fought for my children… tried to look good… tried to make them see I could do it. But I lost them anyway. I did it for my son. When every moment I was afraid they would take him, too, and I was afraid there would be nothing left to hold on to. Take a breath. Cry into the night. Keep moving forward.

There comes the day, though, when a person just can’t fight anymore. It came to the point where either I fought to live – or let life go. It is another battle. It is another failure for me. This time I will embrace it. This time I will share. This time I will fight for life.

Probably I will get the disability. I don’t qualify for the provincial for financial reasons, but the national doesn’t take my husband’s income and assets into account. I couldn’t share everything, but I guess I shared enough. It hurts, though. I am afraid of being dependent on my husband. I am afraid of the questions from others that I don’t know how to answer. I am afraid of being a burden. It is a hard place to be. But here I will stay, because I know I can’t heal until I really learn to live, and I can’t learn to live in a place where I am only existing.


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