Two years ago I started having severe pain in my middle back. As the months went by, it was getting worse. My personal doctor gave me pain medicine and muscle relaxers but that didn’t help. So I went to the emergency rooms to get X-rays. First I went to Muhlenberg. The doctor gave me a shot of something, which didn’t help, and sent me on my way.
A few weeks later the pain was so bad I was sleeping with pillows underneath me. I went to Somerset Hospital. They took X-rays. The doctor said I had pneumonia and that five weeks ago, my spine nerves got inflamed so he gave me Neurontin. That didn’t work either.
Three weeks later, I went back to Muhlenberg, only this time I didn’t have a car, so I was taking buses. It was twenty dollars one way in a taxi, so I’d take a bus one way and a taxi the other way, which living on social security it was a lot of money.
My legs had cellulites. I worked as a waitress five years at a diner. All these white water things came up on my legs, water spots. They got all swollen, I can’t walk on them. So, I got social security. $570.
I forgot to say that at Muhlenberg I had to give the doctor my history. At the time I was on a Methadone program. So you had to tell the doctors so they know what kind of medication you can’t take because you’ll have a bad reaction to it. So, I was honest. Right off the bat she looked at me like I was a drug addict and a bad seed, and I wasn’t. I had gotten on Methadone for prescription pills, Valium, I took for all my 30s. It had nothing to do with shooting drugs or heroine. But she thought I was still addicted to pills, and all she did was give me the same shot that didn’t work the last time, and also muscle relaxers. So I say, “Can’t you take some X-rays?” She took an X-ray and said it came out fine. I left. I walked home in agony, to say the least.
The last time I went to Somerset Hospital. The same doctor I saw earlier said the reason they couldn’t find out what the pain was, was that I still had a touch of pneumonia in the bottom of my right lung. He gave me an antibiotic, the Neurontin again, and a pain medication, and sent me home.
I then went to my personal doctor. She gave me pain medication and told me to go to the emergency room, get X-rays again. There was nothing she could do about it. So again, I went to Muhlenberg. It was the first time I didn’t get again that mean doctor, but her resident. He was really sympathetic. He was gonna give me X-rays, and he was gonna take a blood test finally. He was gonna do his job, actually. He went off to get me pain medication. As soon as he did that, the doctor I had seen formerly, stepped in.
I said to my nurse, who was a male, he was filthy dirty. I thought he was a patient! He had dirty white sneakers on, greasy hair. I didn’t know he was a nurse until he put gloves on and was taking my blood. I tell the nurse that I don’t want the medication she gave me last time, because it didn’t work.
He yelled at me, “You don’t come to us and tell us what to give you. You come to us, we tell you what we’re gonna do for you.” He was really snooty. So I called the doctor over and I told her to please see how much pain I was in. I couldn’t sit up straight in the bed. She goes, “See what?! I can’t see pain! How can I see pain?!” I didn’t mean it literally, I meant it in my face, you know. She was being a real jerk about it. I said, “Never mind, just let me go home.” As I was leaving, I saw the blood, the glass tubes, laying on the counter with no name on it, nothing. They weren’t even gonna send them to the lab. I went home.
About twelve days later, I couldn’t stand it anymore. I went back to my personal doctor. She gave me more medication, muscle relaxers, and I went home, spent the weekend in bed. I couldn’t get out of bed. I was in so much pain. My son had to walk me to the bathroom.
I had to go somewhere on Monday. I couldn’t stand up to get dressed. My son said, “Mom, you have to go. Try to get up.” So I stood up, my legs collapsed. I couldn’t feel anything, the pain was so severe. He called an ambulance and I went to Somerset Hospital. They stuck needles in my legs. I couldn’t feel anything. I was totally paralyzed from the waist down.
Thankfully a surgeon neurologist, Doctor Moore, did an MRI. The first time I’ve had it in all these months. He found an abscess, or a staph infection wrapped around my spine and my heart. He tells me, if this certain antibiotic wouldn’t take care of it in two weeks, they’d have to operate. So, I was admitted, with the pain, given a morphine drip. The pain didn’t let up and the abscess didn’t go away, so he had to operate. I had a good chance of dying. He called my family. In fact I didn’t know that I might die until all my family got there. I hadn’t seen them in a while. I was wondering why my mother was there, my son was there.
Before the surgery, this nurse, Terry, was taking care of me. I thought she was part of the hospital staff, actually she was a recruiter from a nursing home. After the operation, she said, “Where do you go from here? Are you going anywhere for therapy?” I said, “I know I can’t go home. I’d like to learn how to walk again, if I can.” She said she works for a nursing home and they had therapy.
A week after the operation she brought me there. It was a nursing home with old people. No therapy, at all. I was in such agony that they couldn’t even wash me or turn me. I, I, I could never forget that pain for weeks. Gradually over a month and a half, the pain subsided.
Six weeks later I was supposed to go back to Doctor Moore. Well, I didn’t know that. But they knew that and they never brought me. He thought I fell off the face of the earth. I found this out later on. He was wondering why I never came back to see him, after an operation like that.
They kept me in bed for ten months on my back. They had made me a back brace in the hospital to wear. When I got to the nursing home, they said I’d lost too much weight, the back brace wouldn’t fit, it would do me harm. So I didn’t even wear the back brace. I was supposed to wear it, get up, learn how to slide from the bed to the wheel chair. They had no occupational therapy to do that for me.
Much later they had one guy come in, only because I was on his route and he felt sorry for me. He’d come in twice a week and give me some therapy, moving my legs a little and show me some exercises I could do in bed. That’s it. My son would come, and after like six months, he said, “Mommy, try to move your toe.” I couldn’t. But two months later he said, “Try again,” and I moved my toe. It was the happiest moment in my life. I was able to move my toe. And I was still laying there.
A new social worker started working there, he was young. He came in my room and told me who he was. He said, “Karen, why are you here?” I explained to him. He said, “Why are you laying here in a nursing home? How come you’re not in sub-acute therapy?” I said, “I don’t know. I thought they were supposed to send me from here.” He asked me who my surgeon was, and I told him. He said, "I’m going to get in touch with him.” I said, “Terry said she tried, but they never called her back. She left message after message on his phone and she never got a call back for the last nine months.” He said, “Let me try.” He called and left a message and in an hour Doctor Moore called him back. In an hour! He told Steve, the social worker, he was so happy to hear from him because he had lost touch with me completely, like I fell off the face of the earth. And to bring me in as soon as possible. He couldn’t believe that he found me. He was such a jolly fellow. He was so nice, so sweet. He loved his job, you know.
I went three days later to his office, and he took X-rays. When he looked at the X-rays, he came in. I said, “Will I be able to walk again?” He said, “Well, with some acute therapy, I think you will.” He held my hand, we were laughing and crying. He’s such a good guy. I couldn’t believe it. He said, “You have to get into Kessler West, or Magee in Philadelphia. I’ll give them a call and a social worker will call too.”
He threw his part in it.
When I got back to the nursing home, I told Terry. She called Kessler West and told them that I was on narcotics at the nursing home. She came into my room and said, "Kessler West doesn’t take people that are taking narcotics. Don’t get your hopes up that you’re gonna go.” She tried to discourage me. I sat there for a while, and I said to myself I’m gonna call this lady at Kessler West myself, see if I can make a difference because the hell these people are giving me… you know, let me do some things on my own. So I called her and I told her who I was, and what Terry said about the narcotics.
“Oh, that’s not a problem. People come here with brain injuries. Believe me they have to take narcotics. That can’t be a problem, or we wouldn’t be able to take anyone.” She went on to say, “After talking to you, now I like you. [Laughs] You really sound like a different person than what Terry described. I want to get you here as fast as I can.”
A week later I was at Kessler West. Two days later I started therapy. It did wonders on me. I was barely curling a toe, my legs were swollen like big logs, hard from laying flat, and two weeks later I was moving my legs up and down. I was bendin’ them, and the swelling in my knees, my ankles, my feet had dropped. They did wonders. [Sighs] I felt so limber.
I then found out they only take people six weeks, on any insurance. They told me to try to find a place that would accept me, that had the therapy that they were doing. I looked all over, but everywhere they had long waiting list. So they said there’s a place, this one, they said they had same Kessler therapy here. I figured, if they do Kessler it must be good. So I came here and I was brought into this mental unit.
People were screaming and biting themselves, dribbling and crying... It was crazy.
The aides here are so mean, very abusive, especially to the older people who can’t talk. They’re pushing them around, hurting them, throw them around.
People walk around with wet soaking pants, through the diapers, crapping their pants for hours. The whole ward stinks with poop and pee.
Yeah, the aides don’t clean them. You ask them for something and they act as they don’t hear you. They give you a nasty look, they keep on walking away. I got hit by one of them. They put her on a different unit for four days, now she’s back. I think they gave her a warning, because now she’s nice to me.
The health care in this country is atrocious. Why can’t we have free health insurance, like Canada? It’s just terrible. And the nursing homes take people’s homes, everything, before they even touch their insurance. They leave them with nothing, their families with nothing.
I lay in the bed twelve hours a night, or ten. They make me go to bed at ten until ten in the morning. By the time I get out, I can’t even move my legs.
The nurse puts on my socks, pants. It’s terrible that you can’t do anything by yourself. Not going to the bathroom, to bed.
I waited three months before I got evaluated. I kept on telling them, “I’m regressing. My legs are starting to get numb again. What am I supposed to do?” They just kept putting off. So finally three months later they evaluate me by just how high I could pick up my feet. Of course they wouldn’t go up as high as they did at Kessler because, dude, it was three months later. They said, “Well, you’re never gonna improve anymore from here.” I said, “Yes, I will, if I had therapy. I improved at Kessler! I stopped improving here because I didn’t have therapy.”
Well, the head of the department was supposed to okay my papers but she was sick, she was out for three months. Then they got a new person, Melissa. After five months I talked to her and she finally gave me three weeks. But she also said, “You have to learn to accept to live your life as full as you can in a wheel chair. Don’t waste your time trying to walk.” Discourage me as much as she can.
When she got me the therapy room I had a good therapist, Abe. He got me exercising my legs. He stood me on the parallel bars. I was standing up by myself. He says, “No wonder you were so angry. If you had therapy all this time, you could be walking by now.” I said, “Yeah, I know.”
Two days later, Melissa came to see how I was and I said, “I was so excited by what Abe said. I told my nurse and a friend of mine.” She said that I shouldn’t have said anything because Able could get fired. He had no right to say that because it wasn’t true. He wasn’t supposed to get me on my feet. “That wasn’t what we agreed on.” “You got me in therapy so I could work on my legs.” She goes, “Okay, but no more.”
She gave me three weeks of occupational, so I got another guy when I went in the next day. For three weeks we threw a balloon at each other for my balance, sitting down, nothing to strengthen my legs, nothing.
I said, “When are we gonna work on my legs?” He said, “Melissa doesn’t want me to.” I said, “That’s what I came in here for!” He said if I progressed in a month, then we’d see. Keep on going. Three weeks later Melissa had me get on the parallel bars and try to take a few steps. I took three or four sliding steps, I wasn’t able to pick up my knees and legs. I was able to stand up, of course. But she said, “Okay, you’ve done well. Your therapy is finished.” I said, “Finished?! We didn’t even start on my legs yet!” She said, “I never told you we were gonna work on your legs.” I said, “Yes, you did. Me and Linda,” my social worker, “and you discussed it in her office.”
And that’s the therapy I got here. From Kessler West my doctors sent me here to get therapy. And eight months later, I still haven’t gotten it.
If I had family to fight for me, go up there and say, “She was sent here for therapy. Why isn’t she getting it? Why is she sitting in her room for three months?” But my son is in jail. My mother’s in a nursing home. My brothers are dead.
She said my legs were spastic. She said there is a new medication out, Baclofen. They showed doctors and nurses videos of. At first they inject it in your spine. Sometimes the patient can start walking. If that doesn’t work, there’s a disc that they insert in your spine and it drips a dosage of the medication every day for three, six months, and you’ll be walking.
But, I feel, before they do that, they should do therapy on my legs to strengthen them. How can I walk on weak legs?! I haven’t walked in two years, my legs are weak now. How can I walk on weak legs? If they don’t give me physical therapy before I start walking, then they’re gonna think I failed. Anyway in four to six weeks I’m going to go in for an evaluation to see if I qualify for this disc.
In the videos they showed there was a woman who had a stroke, she was paralyzed from the neck down. Two months later, after this medication, she was moving every part of her body, walking down the hall.