Carrie Clark shares about living in Rochester with both physical disabilities and mental illnesses.
Carrie was diagnosed at 14 with bipolar disorder, and later the diagnosis was amended to borderline personality disorder, schizoaffective disorder, PTSD (post-traumatic stress disorder), and anxiety.
I was placed in a foster care house for adults [in Rochester] when I was 31. I moved from there to a halfway house in February 2003. I was really nervous about moving into places with other people. Lucky for me this other gal was looking just as nervous and confused as I was so I went up to her and introduced myself.
“Hi, I’m Carrie! How are you?”
“I’m Marijo. Is this your first day?”
“Yes it is! So we can both be scared together?”
“Yes we can!”
So we ended up being roommates. She is the sweetest lady I’ve ever met in any time in my life.
By now I was working at Shopko part-time… until I punched the manager in the face. They barred me from the store! The cops took me home and my counselor came out and scolded me.
A few weeks later I took an overdose on two medications and somehow ended up at the Park Towers. To this day I don’t know how I got there that night. I don’t remember driving back, but I was perfectly parked. They found me unconscious and took me to the hospital.
After this episode, Carried was remanded by the courts to St. Peter’s Regional Treatment Center for six months.
So I stayed there at St. Peter’s for 6 months and I decided I better get myself together, because if I don’t they won’t let me out. So I started cooperating about two months before my release date. I thought maybe if I cooperate they will let me get out. Luckily I ended up getting out on time. I met back up with Marijo, who had been talking about us getting an apartment for a long time. I asked her if she was still interested, considering my stay at St. Peter’s and she said “Of course!” We had an apartment after all our paperwork cleared.
After 11 years Marijo walked in my room with a letter, handed it to me and walked out. The letter said:
“I don’t know what to do anymore. I think you are turning for the worst again and I want to stay better. So I found a place to live. You will have to pay the entire rent until you can find another place to live.”
And she stood by it. I didn’t hate her for it. I knew she had her reasons. She was afraid she would find me dead or something. So I went into foster care for a while. And after a while she started to call me again. She expressed that she still wanted to be friends. She told me that she was scared at the time and that she didn’t want to be responsible for my death. So we made up and ended up talking about five times per week and meeting up twice per week.
Then one January, I remember, I was on my way to pick her up for lunch. It was very cold and windy. She wasn’t standing on the front stoop like she normally would. I figured she didn’t want to stand out in the cold. So I went inside and climbed up the stairs a little and yelled after her.
“Marijo, are you up there? Marijo? I’m going to be pissed if you’re not up there! “
And I didn’t hear anything back. I figured she went out to lunch with somebody else. I said, “If you went out to lunch with someone else I’m gonna be crushed!” jokingly.
So I finally made it up to the top of the stairs. Now I’m cursing under my breath, just getting madder and madder. I get to her door. I open it. And there she was lying dead. Absolutely dead. I checked for a pulse, a heart rate. Nothing. She was ice cold. So I find her phone and call 911. I told them I was her closest friend and that I’d found her. When they got there the first words that came out of their mouths were, “Where were you when this happened?” and I explained the whole story to them. And the medic writes it all down and says “You’re right. She has passed.” And I felt so bad. So, so bad.
I wrote her eulogy for her memorial service, [but] I couldn’t go to the funeral. I just couldn’t. My legs were almost completely paralyzed by now, and emotionally I just couldn’t bear to go. And my counselors and social workers wanted to send me back to St. Peter’s again when they saw my grieving. I was telling them that there was nothing wrong with me; I just needed to grieve. The judge sided with me but still put me in foster care for a short period. I told him that I was okay with that.
I had my first operation in 1980. That was just for pain in my knee. Then the other knee started to hurt, and for a while they were just going back in forth with the pain. I would get one fixed and then the other would start hurting. They just didn’t get any better. Then I had an accident at the nursing home I was staying at. Someone wasn’t being attentive and I fell. I spun around and the wheelchair went flying. A counselor came up to me and took me to the doctor, who told me that I had only suffered a minor concussion. But the next day after my visit there was this tingling sensation and pain in my right foot. I figured it had to deal with the fall and just got overlooked. So the doctors started to treat me but the entire treatment felt excruciatingly painful. It hurt like hell. I didn’t know what to make of it. I had never felt that much pain in my life. So they did an MRI of my foot. Turns out I’d had RSD, regional sympathetic dystrophy. They told me that it couldn’t be cured. It just came up out of nowhere after I fell. And that’s the way it’s been ever since. It started in 2006. By the end of 2006, my feet were pretty much a lost cause. The RSD had hit my other foot. I’d spent the majority of the year in the nursing home. I’ve had 20 knee operations, 11 on one and 9 on the other. I’m in the chair because of my feet and knees. And I have COPD (chronic obstructive pulmonary disease) which makes it very hard to breathe. I can walk a very short distance, but that’s about it.
Is Rochester an accessible city?
Parts of it. Downtown is great. You can go up any sidewalk and it has a cutout. Once you get to the neighborhoods you start to get into trouble. Sometimes I have to go into the street and go all the way down one way just to get up onto the sidewalk that starts blocks away. Many parts of Rochester are still like this. And then you get stuck in ice a lot. Sometimes people stop by and help me, but I can get and have gotten stuck in the ice for quite a while. It’s very frustrating. Wheelchairs do have limitations. An inch and a half can screw up your entire system.
What advice can you give to others who are living with disabilities or to their family and friends?
Able-bodied people should be shoveling their sidewalks. If they don’t, I can’t see potholes. Sometimes I can’t see anything, even if I can move on top of the snow and ice. That’s the biggest thing. And don’t yell at us from inside of your car, “Get off the street we don’t need you!” I don’t get that very often but it does happen enough for it to be a problem. It’s not an everyday thing, more like every 3 to 4 weeks. Now I do this new thing to them. Instead of giving them the finger I blow them a kiss like this: *blows a kiss to the driver.
Some people may feel uncomfortable around people with disabilities because they're worried they'll say the wrong thing. What advice would you give them?
Any person who is able-bodied should engage with people with disabilities. I spend the majority of my time alone. I meet with the PCAs 3 hours per day. That leaves 21 hours where I am alone. Just come up and say hi. Some people are so sweet and will come and fix my blankets or ask if I need rides anywhere. Most people are very nice, but then you have the few who just couldn’t give a darn. People think that if we are in wheelchairs we can’t do anything. You run into people who over help you at times. They just think we’re dumb.
People get surprised when I tell them that I work for NAMI. They assume that people with mental illnesses are completely insane, that we are weak.
If someone is asking honest questions in a nice way about my mental illnesses or disabilities, I will talk to them all day. But if someone has their nose stuck up, I just roll away. No one has physically approached me and called me “crazy” or a “nut-job,” but when I tell them I have a mental illness you see them change. They kind of back off. They’ll say, “but you speak so well.”
I’ve spoken to immigrants that are surprised I would even tell them that I have a mental illness. A lot of ethnicities look at mental illness as something that stays in the family. That works sometimes. But if they need medication what are they supposed to do?
What do “diversity”,” inclusion”, and “welcoming” mean to you personally? Do you feel our community is diverse, inclusive, and welcoming?
I do not think we are welcoming at all. I hear people in this apartment building saying mean things all the time. They write “go home” with spray paint in the elevator. They get off of elevators when people of color get on. I think that’s the dumbest thing anyone could do. Some people will purposely walk their dogs very close to Somalis that don’t like dogs. Some Somalis are deathly afraid of dogs. Others just don’t see dogs as something that you would pet or touch. They don’t entertain dogs. And some people will let their dog go on the leash so that they will go up and start licking on and touching the Somalis.
Tell us about your work as NAMI’s warmline coordinator. (The warmline is a non-crisis peer support line for people living with mental illness.)
Everyone that works on the NAMI warmline has to have had a mental illness. It takes one to know and understand one. We’ve found that that approach works when addressing mental illness. If you give the folks calling in a listening ear, a little tenderness and love, that’s all that most of them need, someone to talk to. Last year we took in 2,700 calls and that was a low year. I want us to get up to 3,000.
I was inspired by Carrie’s courage and grateful for her willingness to share her story. I can think of 3 challenges that I would like my readers to take away from this blog:
1) Actually get out and engage with the disabled community.
2) Make sure that your sidewalks are shoveled, plowed, and clear. Every little bit counts.
3) If you were inspired by this story and would like to have more questions answered, then come out and speak with Carrie and other community members at a Human Library event. Check out a Human Book to hear their personal story.