“One of the greatest things I hear from my friends is when they say, “I don’t even think about you being in a wheelchair. I forget!”” shares Alicia. In 2009, Alicia contracted Transverse Myelitis and was paralyzed from her ribs down. And while Alicia is grateful for her friends who see in her the person instead of the disability, the notion of actually forgetting she is paralyzed is something Alicia admits she doesn’t understand.
“I never forget. There are many days I wish I could! Every time I want to move, my hands touch the rims of my chair and I remember. Every time I want to transfer, I struggle to get where I want and I remember. Every time I touch my legs and can’t feel it, I remember. There is not one area of my life that has not been affected by my disability and because I live in this body, I always remember.”
Alicia shares that even in her relationship with her husband Jimmy, the subject of remembering vs. forgetting comes into play. Alicia says that she often keeps her daily difficulties to herself. She’s not one to whine about her problems or obstacles she’s facing, so instead, she sometimes clams up when she’s having a particularly bad day. “Jimmy has said to me often that he just doesn’t see my struggles,” she says. And on these days, Alicia says that she and Jimmy have learned through experience how to keep their relationship moving forward.
“He has had to learn to read my quietness and be tender to that situation. I have had to learn to tell him quickly that it is not him, it is just me today."
Here’s Alicia’s advice on the remembering vs. forgetting conundrum: “If you have a relationship with someone with a disability, don’t forget. Don’t forget that they never forget.” And conversely, “If you are the disabled one, then choose to forget. Don’t bog down in the way it was or how you wish it was. … Press on with the action of today, not the echoes of yesterday.”
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