Jennifer McMenamin Alexander on Living with Multiple Sclerosis

JenGreen

Jennifer is known in Encinitas for taking two or three yoga classes a day, being late to class, being very skinny and posting cat photos on Facebook. This interview will explain some of that.

Tell me about when you were first diagnosed with MS.

Pretty much my entire life I’ve been ill in some way or another. I had a lot of mental issues and stress related issues that showed up as migraine headaches. My headaches became stomachaches, then turned back into migraines. I would experience extreme numbness in my hands, feet and face. The doctors weren’t concerned because migraines run in my family. To save money, they put off the MRI for many years and lumped me into the migraine category. I started having MRIs regularly starting at age 12. They knew they were looking for something but they weren’t sure what it was.

Multiple Sclerosis means “multiple scarring.” Basically your T cells and/or skin cells attack the myelin, the protective coating of a cell. I was misdiagnosed with Lupus and then Epstein Barr [commonly called Mono] when I was a teenager. People with MS have a serious fatigue problem. And that’s why I have my Coca-Cola problem. (laughs.) The doctors started calling it Chronic Fatigue Syndrome, then they put it in the huge trash can diagnosis of Fibromyalgia. Now when I hear a doctor say that word, it means, “I have no idea what’s wrong with you.” It just makes them feel like they’re giving you an answer. And some people really need and want an answer.JennOtto

My symptoms would change. I went completely blind for 15 minutes one day after a fall. I’ve taken a million other falls similar to that where I’ve landed right on my tailbone. They think I lost my vision because there is disconnection between my head and body. That’s why I do two yoga practices every day. In the first one I need to go through the shock and start to feel my hands and feet. It used to hurt a lot, like someone was hitting me on the hands with a hammer. But now it doesn’t hurt. If I don’t practice, I’m numb and can’t feel anything.

Doctors will only diagnose MS if the MRI or CAT scan shows two separate occurrences of scarring or cysts near the brainstem. I was diagnosed with MS when I was 32. They finally found the lesions.

What’s an everyday problem that MS brought up for you?

One really vivid thought is walking Otto to kindergarten and first grade. I parked my car and walked him in. I didn’t feel comfortable with him walking himself around the cars and I didn’t want him to have any hardship. I would have to park a block or two away, sometimes farther, and it’s cold in the morning, especially to me weighing 98 pounds. I’d wear many layers of clothes and still be freezing. My knees kept locking up and I fell a few times. I’ve broken most of the bones in my hands from so many falls and taken a whole lot of damage to my face.

kapotJenHow does yoga help?

My neurologist told me that yoga could help me find ways of coping with the pain. I was on so many medications. I needed to learn to manage the pain through breathing and mind control. They couldn’t do anything more for me physically with the pain medications (and this was with the strongest drugs that they have.)

My friend from Thailand brought this amazing energy into my home every time she’d come to visit. I couldn’t wait for her to come back so that I could be around her. One day she finally moved back to Thailand. It was the same day I had taken my first yoga class and I felt exactly the same as when I was around her. I was like, “This is the feeling I’ve been looking for! I can make it myself.” The more yoga I did, the better off I was. The bummer was that “yoga” was a 4-letter word in my household. [My husband] Paul hated it and hated me for going because it took time away from him.

Because of MS I don’t always look like a normal person when I walk. I’m off to the side or off balance and uncoordinated. But after my first yoga class, I have better spatial awareness and peripheral vision. I need to do yoga every day. And I feel like I’ve been successful on any day after I’ve done my yoga practice. I use it as a barometer for how well I’m doing.JennSKinny

I worry about strokes. I’ve had three. They call them TIAs (Transient Ischemic Attacks) but they’re essentially mini-strokes. I think those were caused by my body getting too used to my medicine regimen. When I tried to change or decrease the medicine, it caused a TIA.

I had two supposed heart attacks. One was because of a muscle spasm related to MS. I’ve spent a lot of time in hospitals. I feel like I’m on a really narrow wire and I can fall off at any time. That’s why I’m so obsessive about yoga. Even if I come into class late, I feel like it’s that important that I’m there. I feel like yoga fixed me and there’s a mental component of, “If you don’t hit A, B and C, then you’ve caused your own problem.” There would be a guilt component because I don’t want to let Otto down.

Yoga has saved me from surgery and it’s my main mood stabilizer. I used to have a medicine for depression, one to keep me awake, one for pain, one for blood pressure, one for the disease itself to suppress my immune system and one anti-nausea medicine to chase all the other medicines that were making me feel ill. I pulled myself off of all of them.

JennThickerTell us about your alternative methods for healing.

I went to see Alison [Lewis Polan] for rolfing. It was mind-bendingly painful. I was crying and screaming, “I can’t take this!” But she said, “Yes you can. You’re strong enough for this.” And she’s right. There’s no amount of pain that I can’t withstand if I know that there’s an end to it. When I was in a car accident, it felt like there was a stone in my heart. It felt like Ali reached in and grabbed it out. The rest of the rolfing series was about working the pain out from having that rock stuck in me for so long. And it was symbolic, too.

This disease has so much to do with stress and mindset. Early on, I was so sensitive. I basically raised myself because my mom was a full-time nurse and a single parent. She was only 20 years old when I was born. Sometimes I had a babysitter, sometimes not. I started taking care of myself starting around age two. I’ve always thought, “It’s all on you, Jennifer.” My stress started early.

I have to make a decision about how I want this disease to go. I used to be really rigid about what I eat. Now I’m further away from full-on attacks and being covered with lesions. So if I see something that makes me worried, I just get back on track. Like if someone’s smoking near me, I’ll run just to get away from them. I won’t put myself in danger at all.

In rolfing I found that because it’s so intense, it releases weird latent illnesses that are stored in the spine. I don’t know how much of what I was exposed to as a kid is affecting me now.

If Alison tells me to focus my energy on growing my leg longer so that it can balance out with the other leg, I truly believe I can make that happen. I can feel it and measure it. I’ve grown an inch since I started yoga. I’ve put on 12 pounds and most of it’s retainable weight because muscle doesn’t go away.

Did you gain weight when you were pregnant?JennFamily

I gained an amazing amount of weight. I weighed 233 pounds when Otto was delivered. I was a skinny little girl, then around age 10 I started getting chunky. Then one summer I grew over five inches and became the tallest person in my family. I went through so many weight changes. There are times, I can it feel even right now, when I have more mind control over my weight. I was in a place for about two or three months where I couldn’t lose weight, I could only gain. I felt bloated and like I lost control of something. I can’t quite articulate what it was. It was something in my personal life, like the lawsuits that I was in. There is so much about illness that comes from stress. If you’re dealing with a gnarly disease, stress is your worst enemy.

Talk about your relationship with Otto’s father, Paul. [Paul died 11 months ago.]

I met Paul when I was 20. He was such a stable, nice person. When I met Paul, I wasn’t getting migraines very often. But they increased and were at their worst between age 26 and 28. I went on disability twice because they were so bad. I couldn’t get out of bed. I was a database programmer and analyst. It was a 24/7 job where I had to be on call at 3am. [Jenn’s degree is in Computer Science.] My employers would say, “You’re wonderful but your body’s unreliable.” Yoga has given me faith that my body isn’t unreliable.

Paul developed Disseminated Aspergillosis that created cloud-like formations in his brain. He started weighing less than I did and was misdiagnosed with Diffuse Large B Cell Lymphoma. Because it was left to sit for two years as a skin condition and not treated, it became a T Cell Lymphoma that entered from the skin in. He was also diagnosed with a rare skin disease that’s hereditary, a chromosomal abnormality.

CancerThere was only room in the house for one illness and his trumped mine. Honestly it always had. He never once came to any of my appointments to hear about what MS was. He would see giant bottles of pills in the house, and some were like $2500 a month, but he didn’t care to learn about it. My biological father was helping me pay for the medicine. He had nothing to do with raising me but he felt personally responsible for giving me MS because it’s a predominantly genetic disease.

Paul and I were together 12 years before we had Otto. We wouldn’t have had any arguments if I had been willing to travel with Otto when he was a baby. Paul wanted to travel with him and I said, “What?? You want me to bring my little kid to Cambodia or Vietnam?” I wouldn’t even let Paul bring Otto to the beach for the first three months because there are germs at the beach! I was really overdoing it because my mom under-did it. I had no one caring for me so I over-care for my son.

Are you afraid of death?

No, not at all. But I do worry about my son.

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2 comments

  1. Anna Buehring · · Reply

    Thanks for sharing. Wonderful interview and …very personal and helpful. I’m glad others will benefit from your story. You are truly an inspiration and role model for the kind of spirit and rock solid person one needs to become to fight this. What an incredible journey…of effort and hardship, challenges and triumphs. I don’t think you could ever hear enough how in awe some of us are of you because of your determination and discipline. It is fascinating to hear your approach as it may be alternative to what so many others do to deal with MS. I will always think you amazing and hope you never hear it enough.

    Liked by 1 person

  2. I had the honor to practice once next to Jennifer during one of Tim’s led Second Series classes last June (this was during the Primary Series TT.) We spoke for a bit and I learned then what a lovely, soul she is. I did not realize she was also a very courageous soul, too. Thank you for this interview!

    Liked by 2 people

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