MySoul: An MS Story

I was recently asked to tell the story of the diagnosis that led me from worrier to warrior. I had been tormented most of my life by a vicious reality. I was strong mentally and emotionally. I was that kid flexing muscles and competing all the time. I could be dared to do anything. … but then I would have these days, or moments, when I felt so weak, so tired. For as long as I can remember, I went from diagnosis to diagnosis. Things got really bad when I was in sixth grade, nearing the end of elementary school and entering puberty.

Something happened. No one ever fully explained it then nor yet. We were shopping after Christmas sales as a family and everything started moving all around me, not spinning exactly, more like floating or undulating. I went down. I had to sit. That night was the first of many doctors visits. Most left me feeling like I was probably just crazy. But for months I could not sit up for extended periods. My honey blonde hair actually changed color to a dark dirty light brown that seemed to have a greenish hue. And I cried a lot, home each day. My muscles were still strong. My wit sharp. My humor shifting from silly to dry, but quick. What was wrong with me?

That’s when I was given anti-seizure meds. Then there was the time I was given immuno-suppressant meds for an immune disorder. Then there was the time I was diagnosed with lupus. Then there was the time that I went off all meds and did pretty well, but new weird symptoms kept creeping in. Where did these random panic attack-like feelings come from, at odd times? Why did my hands hurt so desperately sometimes that I couldn’t write? Why do I get so dizzy all of a sudden? Why is my bladder so out of control? What’s that ringing in my ears all the time? Why do I feel like I’m vibrating? Why is my face tingling? … no single diagnosis could answer this. I was finally told that vitamin was being linked to “weird symptoms” like mine. And, although my levels weren’t that low, I began a regimen of vitamin D. Why not?

Everything changed for me one night. I had a job I loved. I was financially stable. I was working out regularly. I had just started my doctoral studies. I was active in my community. I had committed to enjoying life. And, after a brilliant performance at a local theater, I stood to give a standing ovation and I could not feel my right side. I rationalized that away for a couple of weeks but it began to spread while flaring up from time to time in the most distracting ways. I’d be leading a meeting and then, instantly, my right side would rage with pins and needles.

I broke down and went to the doctor again. We agreed I needed an MRI. We didn’t say what we thought it was. We both just said, we need to see if there is something impacting my nerves. We knew, after years of so many strange symptoms we had to take this step, but we didn’t talk much that first visit. When I received the results from the nurse “lesions” that a neurologist would need to find out more about, I knew. I had been researching. My doctor knew. We said, “we’ll see what the neurologist says,” but we knew.

I just didn’t think the universe would do this to me. My stepdad’s first wife died with complications related to MS. His children, whom I loved and cared for and considered siblings, had had to watch that. How could God force them to watch that with me? It didn’t just seem statistically improbable, it seemed cruel. I had some “why me?” moments for sure.

The worst was when the final unequivocal diagnosis came in, nine MRIs later, multiple exams, CT Scans, blood work…  every band of my spinal tap had been positive. I was told I could still do things like go to movies with my family and live a normal life. Well, I didn’t want a normal life. I wanted an extraordinary life. So I called my family and told them that I would do all I could to live with faith and to be a success story. And I have.IMG_2175

My greatest success though, has been in becoming an advocate.

  • I went too long without a diagnosis. That cannot be allowed to happen to others.
  • I sat scared and alone in infusion centers with all levels of health and wellness around me wondering, is that what I will be like in a few years?
  • I had to hear my doctor say “I really thought you’d be in a wheel chair by now.”
  • I found meds that don’t make my life worse and allow me to live well. Two pills a day, forever. Not a cure, just a 60% reduction in the likelihood of new lesions–if I’m lucky and don’t get the rare brain disease that is a possible and deadly side effect. We need more options for treatment and have to move toward a cure.
  • I take meds that literally have a 6000.00 a month copay. I thank the MS Society and research support for co-pay assistance.
  • I know what it’s like to live in fear of every new symptom, new question, but I no longer worry “what’s wrong with me?” Instead I am an MS Warrior.
  • MS is about me, MySoul. It is my weakness, but it has made me stronger. I will keep fighting.

 

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MS: My Strength

MS reminds me how strong I truly am. MS reminds me that life is good. MS reminds me that time is short.

I don’t know why my immune system attacked my nervous system and left me with multiple scleroses. I don’t know if everything really happens for a reason. I’ve learned that I don’t have to understand. What I have to do is live fully, faithfully, believing in joy and love and my body and mind’s own desire to heal.

By nature I am loving and peaceable, and also incredibly competitive with a tendency toward judgment–especially of myself. Last night, for example, as I did my workout. I went from celebrating my strength and honoring my body for continuing to progress to cursing my weak triceps. I completed multiple sets of 30 military push-ups, which could be considered an accomplishment for anyone—let alone a 40-something fighting MS. Then, as I wobbled during my tricep push-ups, I momentarily gave into frustration.

 

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After 3 sets of 30 military push-ups I chastised myself for my lack of strength… really?!

“Why can’t I do these?”

“I’m so weak!”

“Why?!”

Really. This was my thought process at the end of a beautiful day that had included teaching yoga, working a productive work day supervising school administrators and supporting colleagues, connecting with friends, getting in a strength workout, spending time with my husband, and even just completing my gratitude journal for the day. How quickly and easily I went negative even after what, by all accounts, was a great day!

Nataly Kogan’s book Happier Now: How to Stop Chasing Perfection and Embrace Everyday Moments (Even the Difficult Ones) explains the neuroscience behind our continued obsession with finding fault, seeing the negative, and how that’s led many of us to strive destructively toward perfection. And I’m far from a perfectionist. But I understand that our minds are programmed to see problems. This is meant to help us avoid danger. We must avoid the danger of magnifying those problems, however, and, as HeatherAsh Amara coaches in The Warrior Goddess Training Guide, we can, instead, observe it, name it, and PUT A PERIOD ON IT. it is what it is. We must acknowledge it and then choose, free of judgment, how we will–or even if we will–respond.

So. I struggle to complete ten tricep push-ups in a set. I CAN DO TRICEP PUSH-UPS. I can move and keep strengthening my body. I have the luxury of time to dedicate to reading and learning, stretching and growing. I lived a great day and then had time to reflect and give thanks.

MS reminds me that some can’t move their bodies. Some don’t have time to rest. Some don’t have resources to heal.

My God, MS reminds me how much I truly have and truly am. I am blessed.

So today I give thanks for my strength. And I give thanks that MS reminds me that every movement of my body is a miracle not to be taken for granted.

I can’t wait to see how I get to celebrate and embrace my blessings today.

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My Soul Songs #12

A Woman on the Move

Motion, movement, momentum, muscle memory… I am a woman on the move. I’ve always been active and more than a bit competitive. I’m driven. But I’m fearful too.

The first time I lost my momentum, I was twelve. I was in sixth grade and I dropped to floor one night in December with intense vertigo. I spent the next several months on my back, getting scans, visiting doctors and psychologists about the dizzying numbness and intense fatigue that had hit and seemed wouldn’t leave. Everything was inconclusive.

The words Multiple Sclerosis now explain that strange period and the others that followed, giving a name to the fear of lost motion, a break in my stride. A woman known for her purposeful walk, her powerful swift pace, her high energy– who would I be if those were no longer mine?

I would still be funny and kind. I would still be loving and loved. I would still be Sarah Josephine. I know that. But Sarah Josephine would change just enough to make me uncomfortable. I want to keep moving.

So I do. I cannot control the future but I can choose my path. I can influence my surroundings. I can accept and embrace the journey and all its obstacles and opportunities.

I am a woman on the move. And I keep on moving because I can, with faith in every footstep and gratitude in every breath.

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