by Tim Benjamin
Where have you been, Tim?
I’ve been out and about, you could say, for the past year. I had a minor surgical procedure last July that turned into a major catastrophe. I lost most of my eyesight, and most of my ability to move around. I also lost a lot of my memory. The doctors thought it would just be short-term memory, but it turned into more like the last five to 25 years of my life. It all depends; on any day of the week, my memory is great or I think I’m in 1995. My vocabulary isn’t what it used to be, either.
I spent about seven months in the hospital. I’ve been home since February of this year, but every day I learn something new about myself and about the others who do care for me. The day starts with orientation, and I have to relearn my address and where I am every day. It gets a little better as the days go by: I can remember where I was and sometimes I can remember where I’ve lived for the last four years.
We moved into another house in 2018, and it has the same street number as the former address of Access Press. So when somebody reminds me that I live at 1821, I always think it’s 1821 University Ave. West in St. Paul. This kind of memory loss is a disability that a lot of people deal with as they age, but I am dealing with a lot of it all at once.
After being quadriplegic for all of my adult life, I am now a quadriplegic with new disability challenges. I guess like most sighted people, I thought blindness meant seeing nothing. That’s not how my blindness is. It’s not like a black hole; it’s more like a black mind. My eyes are working, and people tell me I’m looking at them. But I don’t see them because my brain can’t process what my eyes see. I also see things that people tell me aren’t there, because my brain tries to give me “help” by making up things.
What caused all this was traumatic blood loss that gave me a major stroke and injuries in several parts of my brain. I couldn’t talk for months because I was asleep most of the time and I was on a ventilator. Now I can talk but I have to work with a speech therapist a couple times a week to remember how to make clear speech sounds. She also helps me with memory, and remembering where I’ve been and where I have to go.
Relearning speech sounds simple but not so much. I have to work really hard to make people understand me. If you knew me before, you know I love to talk with people, so it’s important for me to be able to articulate more clearly so I can get out in the world or just on the phone for a chat. That means I work trying to communicate with those around me. Some days are better than others.
One of the biggest hurdles I face is the inability to communicate my needs to my PCAs and nurses. It’s also been really hard to get staffing, so I’m really grateful for the help that I do get.
I used to sleep pretty well, but I had a lot of chronic pain that I dealt with. Now I have no pain issues but I have had serious problems with sleeping. Some nights I don’t sleep at all, and that makes it difficult to maintain friendships and other relationships, because I am in a fog or irritable or just not always there. I’m writing this on a day when I have a clear head after a good night’s sleep.
Anybody who’s gone through rehab and therapy after getting hurt knows what I’m talking about. It’s difficult and scary all at the same time. My spinal cord injury happened 48 years ago in July 1974 and it felt like this. I didn’t know if I could have a good life. I didn’t know if I could ever be independent again. I know that the brain injuries I have now feel like they come and go, as you can tell by my writing. But I have to accept that they are permanent, just like my quadriplegia.
The Americans with Disabilities Act (ADA) came along 16 years after I got hurt the first time and allowed me to get an education and support services that allowed me to do the work I did with Access Press and at the legislature and in the community. I’m glad to know that I’ve got the rights that I have. But I can’t take advantage of those rights when I don’t have caregivers. Right now, I have approval for home health care, but only about one third of my hours are staffed because of the workforce shortages.
Our community fought hard for the supports we have. I hope that they don’t become hollow hopes instead of real rights.
Editor’s note: Tim Benjamin is the retired executive director of Access Press. He has been affiliated with Access Press for 22 years, most recently as a consultant and occasional contributor. He dictated much of this article to his wife Lynda, and is eager to share his experiences.
He’d welcome calls and visits from friends.