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Living life disabled with a TBI: And oh, by the way, I’m Gay
posted 02.08.2016

By Rebecca Preston

Ten years ago I was in a car accident in which I was expected not to live.

I was in the hospital for three months. During that time, and throughout all the therapies, not one person brought up my sexual identity. I suppose they thought it didn’t matter, that there was so much I had to recover from. But it was really important. Throughout the years, I feel as if my sexual identity is the one area in which I received no therapy. And that is a shame.

More articles in this series...

Ambiguous Loss and Resiliency in LGBTQ Aging 
By Lake Dziengel

Anticipatory Grief: Just Think of me as a Guy whose Husband is Dying
By Eboni I. Green

Resilience in Navigating Loss and Transition: Two Case Studies of Trans* Older Adults 
By K. Abel Knochel

I have a Traumatic Brain Injury, or TBI for short. I was in a coma for about 10 days. When I got out of the coma, I couldn’t say my name, and had a hard time with the people around me, but knew that I was a recovering alcoholic. The doctors said that after five years, I would start to plateau in my physical and cognitive recovery. However, I am still recovering today: I live independently and recently adopted a kitten.

I don’t remember much of that time, but I remember going out of the hospital for a day pass, and not recognizing anything. I felt as if I was a visitor from another planet. We drove through the old neighborhood where I grew up. I seem to recall that my sister and brother wanted me to get out of the car, but I was too afraid. I remember how uncomfortable I felt, not belonging anywhere. I felt as if I were floating around in white space. Even though my sister and brother didn’t want me to go back to the hospital right away, for me the hospital was familiar.

Since the accident, and today, I have people around me who would feel comfortable if I expressed my sexuality either way (as straight or lesbian). But I am not now, and have never been one to acquiesce to the shove. I had one “worker” (I never thought I would ever say “I had a worker”) encourage me to look around at online GLBT dating sites. I did that for a little bit and went on a couple of dates: I realize today that I am on a continuum, and am now on the lesbianism side.

Being an older woman has brought about some questions for me. Being an older lesbian with disabilities has brought a whole truckload of questions. I am so grateful for the queers and dykes who came before me and paved a beautiful path for me today!  When the same sex gay marriage ruling passed in the State of Minnesota, I felt as though it didn’t matter that I am a lesbian. Today it doesn’t matter as much as it did when I was younger what I look like, if I “look like a dyke” or not, or that I can still do a cartwheel. There are more important things to think about. I am still terribly lonely. And looking for a partner is not as easy as it was, but then again, almost nothing is.

I have not had a gay “worker.” I’m not sure why, because there seem to be scads of people willing to be “workers.” Today, there are laws when one is looking for a job against asking about, age, sex, sexual orientation, disability—and all of those protections are good. But perhaps we have gone too far. I dream about having a GLBT ILS (Independent Living Skills) therapist, ARMHS, homemaker, etc. Or of all things heavenly, a GLBT transportation company! Ah, to dream … transportation that takes me to and from appointments or to see friends, or even to go shopping, remains a challenge.

Still, the biggest upset for me in the past 10 years is loss. It seems everywhere I turn there is something else that is lost because of my different life. Just the other day my ILS worker helped me to write a resume. The resume is beautiful. There was quite a bit that she had me add, that hadn’t come to my mind. What is hard is that before the accident, I used to assist people in writing their resumes, but I couldn’t do that now.

Most people don’t know about TBI, or how it affects people. I look completely normal. There are disabilities that I can see and know I have, but most people don’t recognize what that means for me, and sometimes say things that seem dismissive.

People say to me “Well, I don’t have a brain injury and I can’t remember anything,” or, “there is plenty of stuff I can’t do anymore that I used to do when I was younger,” or, “I’m a little different too, now that I’m older.”

A great friend told me that as a person with a brain injury, my brain wouldn’t create new memories. There are plenty of things that I cannot do anymore that I used to be able to do.

All of a sudden, when I woke up from the accident, I couldn’t do them: like riding a bike or ice-skating. I used to drive around with ice skates in the trunk of my car because I went skating whenever I could, whenever I saw a rink. I used to play the piano. I had a brain stem bleed, which cut off the highway between the two lobes of my brain. So other creative things I used to do, I can no longer do.

What has allowed me to recover as much as I have recovered is knitting. I was a knitter before the accident. A therapist came into my room to ask me about all of the things I used to do, and said maybe he could help me to remember some of them. Well, he couldn’t help me with knitting, but my lovely sister-in-law re-taught me how to knit in the European method. Today I go weekly with friends to a knitting store in Minneapolis to learn to knit. I relearned how to ride a bike and now have a recumbent three-wheel bike.

Last year I got an award from the Minnesota Consortium of Citizens with Disabilities, the Legislative All Star Advocate award. It was to celebrate the work that I had done in the 2015 legislative session. I talked to Democrats and Republicans about how the Medical Assistance income and asset limits have forced people with disabilities to live in deep poverty. We got half of what we hoped for last year, and will work on the second half this year. We also worked on getting the MA-EPD (Medical Assistance for Employed Persons with Disabilities) premium increase repealed. We won on that front, which meant for me making some money, instead of writing my whole month’s income to the state for my spend-down.

Yes, 10 years ago I survived a terrible auto accident that in a split second made me a disabled adult. I had two choices; I could stay in bed and be taken care of, or I could do as I am doing today, and love my life, myself, my daily doings. All that I touch is amazing to me. All that I see is startling and amazing to me. I have way too many pictures of nothing on my camera. I think I am an artist. Today I love myself 10 times more than I did 10 years ago. I don’t care about things the way I used to. Life is finally “a bowl of cherries,” which is my new normal.


When Rebecca Preston isn't talking to legislators, she knits and writes. Rebecca loves to talk to other TBI patients about how to survive with that malady. Having just purchased a tricycle, Rebecca spends most of her summer exploring the bike trails in Minnesota. If you want to contact Rebecca, please email Lake Dziengel at lakedz@d.umn.edu

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