Friends sometimes ask how my spouse or I are adjusting to my recent neurological diagnosis. It's unusual that someone asks how the changes have affected my immediate family, even though it has caused a massive rewrite of our collective past. So many times before my behavior was described as “difficult” or “frustrating” and needs to be changed to “struggling.” We realize kids born in the 80’s were rarely diagnosed with Sensory Processing Disorder prior to adulthood. Still, it’s hard not to wonder how my life might be different if I had started therapy a few decades earlier.
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You grew up going to hospitals. Not because you had appointments, but because I did. So you began to hate hospitals and going to them. But that hasn’t stopped you from visiting me when I’m in the hospital. Every single hospitalization you’ve come to visit me. To put your arms around me and give me a hug. To distract me for a precious few hours, hours that always seemed to pass too fast. Thank you for bringing sunshine into my hospital room. For taking my mind off of what was going on around me.
Minus the outbreaks mentioned above a lot of us internalize our feelings. We pretend we are fine when in reality it feels like our insides are falling apart. We try to push through the pain, the nausea, the dizziness or whatever other symptom we’re experiencing. We try to be brave and put on a good face for the rest of humanity, but on the inside the struggle is so very real. So we need you to come alongside us and ask us how we’re really doing. Don’t just accept okay or good because odds are we probably aren’t okay.
As time started to go by as I circled the garage I began to feel helpless. I thought back to my grandmother who died as my family drove from the airport to the hospital she was staying at, missing her death by approximately fifteen minutes. It was in the cocoon of my rental car that I began to confront the deep grief inside myself as tears of self pity, tears of anger, sadness, and frustration began to pour out.