Linda Carter describes how myositis awakened her appreciation for life.
I want to do anything I can to help somebody know that there’s always a light at the end of the tunnel.
I have polymyositis and dermatomyositis. I was diagnosed May 8, 2008 by accident. I never knew I had it. It’s not a common illness. I was at work one day — I was in corporate America so I didn’t do any heavy lifting or anything like that — and I was just feeling a little fatigued. I went to lunch with a colleague of mine and I still wasn’t feeling that well, so I went and saw my doctor that evening after I got off work. When I went to sign in, I dropped the papers on the floor and as I squatted down to pick them up, that’s when it happened. I couldn’t get up. My body deflated. I had no muscles whatsoever.
I had no idea what was going on. When I went to the hospital none of the emergency physicians knew what was going on with me, except for one great doctor who just happened to be coming by, and he immediately diagnosed me with polymyositis. It’s so rare no one knew what it was.
Prior to that I was very active. I was working out, I was eating right, I was feeling no pain, and it just happened. I don’t know why. To my understanding, it happens to 1 out of every 100,000 people and I happened to be that one. It can happen to children, and it happens more in the African American heritage. It’s just not well known. I don’t wish it upon anyone, especially a child.
I ended up losing mobility. I became paralyzed for three years. I was back in a fetal position. As I was losing my mobility, and I became totally disabled, my family cared for me. I was in the hospital for a while, and they wanted to send me to a nursing home, but my family totally refused it; they took care of me. My mom, Maria Carter, my daughter, Mone’t Murray, and my sister, Mindy Carter took care of me 100% — bathing, changing, and feeding me. They did everything. But, I still had my wits about me. My brain didn’t shut down, so I knew everything that was going on. I’m so blessed to have had them in my life.
After year three of me being disabled, I was sleeping downstairs and one morning, I’ll never forget, it was in February around 2 a.m., and God spoke to me and said, “It’s time to sit up.” And I sat up. My daughter and my grandson were sleeping on the other couch in my den, and I called her name. She looked at me and screamed because I sat up by myself. This illness and any other illness, it doesn’t just affect the patient, it affects the families.
The doctors told me, off the record, that I had defied all medical theory. This is God’s work. There’s no way I should be sitting up, there’s no way I should have any movement in my body because I was stagnant for three years. My muscles were nothing. But God told me to sit up and I sat up. I started walking, and I’ve been walking ever since. No one can really explain why. My doctor best described it to me as a virus going through your body that has to take its course.
Through it all, I never lost faith. I never was angry because I knew this was something that God planned for me, for the good. I’m a whole different person now. To be able to see the trees and smell the flowers outside; for three years I didn’t know what it looked like outside, other than going to the doctors. Before, I never appreciated the trees and the grass growing, and the flowers blooming, and the birds chirping. It was a true testimony.
I still have symptoms. This will never leave me. But I know what to do. I learned to listen to my body. The best medicine for me is relaxation. I have to totally zone out and relax. Otherwise it could flare back up. I have a lot of problems going uphill. My upper thighs are the most damaged part of my body, that’s why it’s so hard for me to walk on an incline. This illness makes the immune system attack your muscles. And it attacks in your core. So my entire core was gone. But each day I walk. Now I’ll get on the treadmill and I’ll walk a quarter of a mile. And each day I get stronger and stronger. If anyone looked at me they’d never know I was ill. That’s how great I’ve healed. But, it is a silent illness. It can flare up at any given time. You just have to learn to listen to your body and I’ve learned to do that for the past several years.
I had to start over walking again, and I had to start over talking again, so I have to keep moving. I have to keep movement in my body. I’ll take a can of vegetables and just move my muscles in my arms, just to keep them strengthened, because at one time I couldn’t even lift my arms. I can’t be stagnant because that’s not helping me. I just have to keep moving. I have to exercise, but it has to be in moderation. I can’t over exert myself otherwise it will attack me again. So I have to listen to my body and everything has to be done in moderation.
Every normal person’s creatine kinase (CK) level is 0-300. When I was diagnosed mine was 16,800. I didn’t realize it, but I was dying. I had no clue. I now have a regiment of medications that I have to take, but I’m truly blessed because God graced me once again to be able to tell my story and let everyone know that just because you’re ill, doesn’t mean that it stops your life. My doctor said it perfectly when he told me: “You’re not ill, your muscles are ill. Don’t let the illness take control of you, you control the illness.” I think about that every day.
There are so many people with a silent illness. Some lose their faith and that’s the worst thing you can do. If you lose faith, you’re defeated. Another piece of advice that I tell people is that you have to fight. You want to live? You have to fight. You don’t want to be sick? You have to fight. Your mind is very powerful. You have to fight. I’m not going to let this get me. I’m just not. I didn’t, and I won’t.
I think myositis can be misunderstood. If you were to see me you’d never know that I was ill. But, I have to think about what I’m doing before I do it. A normal person will simply walk; I have to think about how I’m going to walk because I could fall at any minute. I have to think about everything that I do, while I’m doing it, but no one ever knows it because it looks like I’m doing it normally. I’m really not. I want people to be aware of the disease. It’s an illness that sneaks up on people. It’s an illness that should be talked about, because you might have it and not even know it.
This illness has taught me that life is precious. Don’t take anything for granted and listen to your body. Everyone’s body talks to them, you just have to listen. If you’re feeling a little sharp pain in your leg, your arm, or your stomach, there’s a reason. If you’re feeling fatigued, or you’re lying in bed all day long because you overdid it, there’s a reason. You have to listen to your body. And when your body tells you to calm down — not shut down — but calm down, then calm down. I’ve learned that more than anything else. My advice is to keep faith and believe that there is a light at the end of the tunnel. There’s a way to defeat, or to maintain, the disease. And with the help of your doctor, do your research. You have to research.
Daily life is a challenge, but each day I find myself getting stronger and stronger. I have no doubt in my mind that it’s going to get better and better, each and every day. My strongest support system is my family. Gradually my body is coming back to normal. I enjoy my two beautiful grandsons, Makai and Mykell. They’re my joy. I can’t always lift them up, but I can hold them.
Before myositis, I took a lot of things for granted. I took life for granted. I took walking for granted. I took living for granted. I took outside for granted. I could have looked at life a little bit differently. I’m humbled now. I take nothing for granted anymore. Now I dance with joy because I wake up. I thank God every day for waking me up, seeing another day, taking another breath.
I had an awakening. Life isn’t brand new, but it’s new. I’m a different person. I see things differently. I had my awakening and I’m good. I’m good.