My mother is a beautiful blend of resilience and strength on the one hand, and a heart full of compassion and empathy on the other. She has had MS for nearly 50 years. I remember her "attacks" from growing up, but more than anything, I remember her mindset: she never complained. Not once. When I was diagnosed, she was the person I looked up to for strength and guidance. I thought it was about time I shared her story with the world. Here is our interview. It's long overdue! And if you haven't read From My Mother's Perspective yet, it's a good one, too!
LL: Let's start by talking about the early years -- you were diagnosed at a time when MS was relatively unheard of, right?
Mom: Yes. I was 24 years old in 1974. I had been married 6 months and was teaching school. After the Christmas holidays, I could not see very well out of one eye and was numb on all the right side. I went to see a neurologist because it sounded like a brain tumor. They spent a week doing tests but in those days, there was no way to diagnose MS. There were no MRI’s or spinal tap tests. They weren’t sure what it was -- they thought it could be MS, but they didn’t really know too much about it.
I had another attack in 1977. I was losing eyesight again and was numb again. But they still weren’t sure what was going on. In 1985, we finally got an MRI machine in Houston and at that point, they could diagnose me. It took 10 years before they could diagnose it.
LL: How often did you have attacks and what were they like?
Mom: Once or twice a year, I had an attack — most had to do with numbness. I had a leg that was dragging and a friend noticed it when we were walking. I had tightness like a rubber band around the waistline. I had the tightness and tingling in my hands — like your foot is asleep and it won’t wake up. I had that in my legs quite a bit. Once, I lost taste in half my mouth. It felt like cotton. All of these attacks lasted 6 weeks to a year. And they would come back, too. But I always knew that if it was happening, I had to rest. I started on diets. I probably spent 30 years of my life on the Swank Diet. It was the only book they had on MS and diet, so I did that. It was a very low fat diet. Now, this is before the era of “healthy eating” and it was also before fast foods. I never ate fast foods. I would really watch what I was putting in my mouth. I felt like the only thing I could control was my diet.
Back then, if you were having an attack the only thing the doctors would do for me was a steroid drip. For 3-5 days, they would drip it into my veins and I did that every time I had an attack, about 2 times a year for 10 years.
Something else the doctors always told me -- if you have numbness or tingling or a strange symptom, it has to be on one side for it to be MS. And it has to be continuous for 48 hours and then you know it’s the MS.
This is what they used to do back then: The doctor would run a big safety pin along my extremities and check for numbness. I would feel it sharp in some places, but not at all in other places. That was how they figured out where I was having an attack.
And they would always make me stand on my toes and walk on my toes and walk on my heels — that would show them which side was weak. If I was having an attack, I couldn’t do that. On some nights when I thought I was having an attack, I would do this trick — stand on my toes and heels — and really, that’s a great, fast way of determining if you're having an attack.
LL: Didn't you feel pretty good during pregnancy?
Mom: Oh, yes! I had 3 pregnancies and I felt great during the pregnancies. Your body is changing, hormones are changing, and MS seems to relate to hormones. I was also vigilant about my eating when I was pregnant. I had a hysterectomy when I was around 42. I remember that seemed to have helped some. I don't think I had as many attacks.
LL: Was it difficult to raise kids with the MS?
Mom: Well, the weather makes a big difference — heat and humidity just absolutely drain me. If I had taken you all swimming during the day, when we came home, I did not have the energy to do anything after that. I don't know if you remember, but after swimming, I turned on a movie for all of you and I had to lie down and take a nap.
I could not do some of the things I wanted to do — like play tennis. I always wanted to play tennis. One time, I went with your father and he was teaching me racquetball. When I came home after that, I couldn’t pick up the milk carton. It was too heavy. I knew my limitations and I stayed within them.
LL: What helped you get through those bad days?
Mom: You have to have other things in your life. I’ve prayed a lot. You have to have something to hold onto. You cannot take all of this on your own. I always had a lot of prayer and that helped me.
But you know what The hardest thing about all of this was?
Mom: Knowing that you had MS. I was always told it wasn’t genetic. I was told I wasn’t going to live until old age. It was such an unknown disease. I waited 4 years to have children just to see how I was doing. I didn't know if I'd be around to raise you all. So when I started thinking about having children, I asked every doctor I knew. And they all said, “There is no way you can pass this on. This is not that kind of disease.” And now, I’m coming to grips better, but when you first started describing that you couldn’t see, everything started coming back to me. I knew what was wrong with you before you had any idea or before you were diagnosed. For those first years, it just killed me knowing you had it.
LL: I remember you came out to visit me when I had my first optic neuritis -- that's when I knew it might be serious.
Mom: Yes, do you remember I was helping you grade papers because you couldn’t see? It’s just the idea that I brought you into this world, and here you are having to face something that I also faced so long ago. It’s knowing that I was putting you through this and all you had was Pierre [my dog] to help you through.
LL: Pierre was enough! We've been through a lot together. What words of encouragement do you have for others who might be suffering from something, MS or otherwise?
Mom: I completely sympathize and I know how frustrating it can be, but you have to draw boundaries and say, “I can’t do this” or “I have to go rest” and put those limitations. And you can’t worry about little things. You can’t worry if you can’t do this or that because it will tear you apart on the inside.
And think of all these younger people who are getting cancer at such an early age. I say to myself, “I can do this.” You have to get control of your mental self. There are so many who are sicker than you or I have ever been. If it's given to you, there's nothing you can do. Where do you going with complaining? Nowhere, except sadness.
And if you’re around negative people, you have to get away from them. You have to surround yourself with upbeat people. You just have to put your mind in a positive light, see the glass as half full.
There’s the best movie on Hallmark — it’s a movie based on God Winks. The stories are being turned into movies! A girl was dating this young man, and one day, she stumbled and then dropped a glass. The doctor diagnosed her with MS and for the whole movie, you don't know if the young man is going to stay with her, then at the end, he was willing to give everything and be with her no matter what. It didn’t matter to him that she may not always be perfect. It’s a really good movie and I’ve seen it twice now.
Here’s a final thought: Nothing in life is going to work out if you’re mad. And I know this from experience. You have to go through this period where your mind is accepting this. And then you have to accept whatever is given to you. If you’re mad, you’re never going to be happy. Happiness is a choice. You have to turn it around and you have to do it in your mind. I’ve had many bad days. And you have to believe you’re given it for a reason. You have to be positive and you have to have something that makes you get up and go in the morning. And you have to think, how can I help others?