On my fridge right now is a photo of me when I was about 5 years old. I’m wearing a sunny yellow cotton dress, and smiling shyly. In front of me, the fingers of each hand lightly touch each other. I don’t know what prompted me to bring the photo out this week, but every time I look at it I think, “The last time I was happy…”
What I mean, though, is “…the last time I was happy before now.” Because these days, I have these wild surges of deep joy. When I look at the bare hills fronted with autumn’s rainbow of deciduous trees. Hear the owls calling through my cabin window after dark. Feel the cappuccino’s stiff foam on my upper lip. Wake.
My best sense is that my functioning was largely okay until I was about four. The way I remember it, school is what tipped the balance. All day long, children moving fast and screaming, even if with joy. It hurt my ears, felt like knife stabs into my core. I couldn’t turn it off, adjust the volume, reduce the intensity. When the teacher joked, I didn’t understand, and wondered why I was despised. I tried more to become invisible, so that I would be disliked less.
And there were thirteen years of this yet to go.
I didn’t last that long. I dropped out of high school and made my own way as best I could. I had no idea that I was seeking a specific sensory environment. I knew only that I felt okay in some places and times, and not at all in most.
My symptoms worsened. Lack of speech, confusion, disorientation, and ultimately hallucinations interfered with my ability to secure housing, remain at work, bear myself.
In the end, though, it got sorted. Ha, I make that sound simple, yes? It wasn’t. Years of therapies and experimentation eventually resulted in a personal program that works for me, and that positions my child—diagnosed with the same—for a much easier path.
Somehow, it’s not enough for me that my child’s path be easier than mine was. I want this for you, too.
Too many people are suffering unnecessarily, because of a social worker’s ignorance, or an organization’s backward policies, or a physician’s misdiagnosis, or a neighbour’s lack of awareness.
Let’s help each other out.
My book and blog are my effort to do what I can in that vein. If you’re struggling, feel free to write to me here. Wherever you are in the world, I can at the very minimum listen well. I may even be able to give you a tip, or help you find a resource that honours this point in your journey.
You are not crazy, nor are you alone.