I picked up the mail on Friday (which is a two-act play since I do it on the way back from the evening Bear walk. Bear wants to get to the doorman, I want to get the mail. We have to do a bit of brinksmanship. I win, but he thinks he wins. So it’s a win win.)
And nestled inside all of those wasteful holiday catalogs were three letters from the Office of Temporary Disability.
The name gave me pause. “Temporary?” But it’s just the part of Social Security that deals with disability. My disability obviously feels very far away from temporary.
Two were addressed to me, one to Nick. They were questionnaires, probing the injury and its impact on my ability to work, investigating the functional impact of the injury across a wide range of activities from dressing to driving to cooking to managing money.
The one addressed to Nick was about the functional impact too, to be reported by the person closest to me who has seen what’s happened since that unfortunate series of events back in October 2022.
It took a village because it needed a village. After I would complete each one Nick would review (for legibility, accuracy and comprehensiveness) and then my brother did a final review.
I needed that support. I’ve said before that there are certain things a person with a TBI just shouldn’t do alone, and completing government agency questionnaires falls squarely in this space.
I made mistakes. I forgot things. I spelled stress as “stress.” My handwriting - which isn’t terrible though Nick says it is - made words like “insufficiency” hard to read. And the two of them found all my spelling errors and gaps.
But it had another impact. The exercise of cataloguing and interrogating each impact of the TBI was sobering. I tend to think of each impact as separate. I get headpain. I have vision problems, big ones. Short-term memory is an issue. There’s dizziness from the eyes and the meds. Concentration and focus are more challenging than ever. I’m still so sensitive to sounds that I have to be careful of what I listen. I can’t do more than one thing at the same time. My sense of self has changed.
I tend to think about each of these symptoms as a strand but I rarely look at how all the strands come together to form a tight knot of disability.
When I completed the surveys I saw the knot, not the strands. I saw the totality of the physical problems, the depth of the impact on my emotional life and mental health, the range of problems its caused for both me and Nick.
It was a little startling. You wouldn’t think so; I’ve lived with this for two years plus.
But creating an inventory was a different thing, and left me in a different place. I know I can never go back to who I was before. I know that this is my reality now. And not just mine - it’s the reality for everyone in my life, everyone I love.
The disability application process is having an effect I didn’t anticipate. It’s forcing me to adjust to my new status as a disabled person. That’s a process that’s not happening easily, but thanks to the Social Security Administration it’s being moved along more quickly. It’s forcing me to understand that I am now and will always be a person with a TBI who is disabled because of it.
It was brutal. The only thing that made the disability document party tolerable was that I had Nick and my brother with me. I couldn’t have done it alone; it was hard enough to do with them. But with them it was possible.
We needed to do fun lovely things after to wash all that brutality away. We cooked. My brother made wings, I made slaw and biscotti. Nuestro querido amigo joined us and we had a really fun dinner and evening. It didn’t wash away the effects of the disability documents party, but it helped balance the day.
But at the end of the day my reckoning with my disability had advanced.
Fuck you, Uber.
I’m so glad you have such a strong support system. I was slow to ask for help-felt it made me look weak. That only weaken my ability to come to terms with what I honestly needed to accept about TBI. Need to move forward and create new patterns of communication, thinking, and learning how to function with my constant problems with TBI. It’s been quite a journey, learned a lot about myself. Most important thing I’ve learned is I’m still Deb. I just have a different mindset and perspective to get where I want to be. Had dinner last night with friends who were on the trip with us when the accident occurred. They have been with me in every stage of my TBI journey. Big hugs to you🫂🫂💕