The Big MyStery

May 30th is World MS Day. I have MS.

You likely know of multiple sclerosis and you likely know of at least one other person living with MS. It is a mystery illness that has been poetically named a snowflake disease because it manifests itself so uniquely in everyone diagnosed with it. A thumbprint. Sure, there are common symptoms and potentially a common path of development and decline but no two people experience MS in the same way, share the same journey or outcome. There is no cure. There are no answers. There is a community of scientists, doctors and MS warriors that continue to write the story and make one step at a time toward a cure, disease management and long term well-being.

I’m baring it all. From the beginning-ish.

There is no succinct way to tell the story. Sorry. Hope you have some time.

My story unfolds in two distinct parts: my diagnosis and my decline.

The year leading up to my diagnosis was jam packed with successive flare-ups. 2007 was a busy and stressful year. I had started a new job, was publicly speaking and networking often, volunteering and participating in the Mrs. Connecticut pageant (yay fun fact!) The summer was also exceptionally hot, and my dad began suffering with his own auto-immune illness that would take months of testing, rapid progression, and many doctor and specialist visits to diagnose. In the moment, these were all just things to deal with. I didn’t view them as particularly stressful although I was carrying a heavy load. And I am not even pointing to these things as triggers necessarily but they accompanied my own silent but very apparent exacerbations. It was like a bad telephone loop; please hold, your call will be answered in the order it was received. Except it wasn’t me holding for a representative. My body was calling and I wasn’t picking up. It took four back to back exacerbations to get my attention. Even though all that year I knew something wasn’t right.

My diagnosis menu was clearly written and I was just trying to order the specials.

The appetizer: cognitive dysfunction. During my public speaking and networking events I would often forget what I was saying. As in, I literally could not remember what I was even talking about. No idea what word I was supposed to say, no idea what I had said in a sentence previously and no idea what was supposed to come next. Sometimes someone was kind enough to jump in and ask a question or say a word that would jog me back into the presentation. Other times I was thankful to have a document to reference. And sometimes I just totally admitted that I was off track, which would garner a laugh and I would move on. I chalked it up to the pressures of my new job. It was a serious problem and I ignored it. Eventually it passed.

Course #1: concrete legs with numbness and tingling. I entered the Mrs. Connecticut pageant in an effort to get over my stage fright and build my self-confidence. I put a lot of pressure on myself in general, and even more so with this pageant because there was a prize to win. A trophy. I say it was for stage fright and self-confidence but I also like to win. I put this pressure on myself. During the bathing suit competition, I was doing my walk as I had practiced at home for so many months prior. Smiling, perfect posture, eye contact with the judges. As I paused to make my final turn to exit the stage my left leg wouldn’t move. I couldn’t pick it up! I stood there a few seconds, which felt like eternity, and it finally budged and no one was the wiser. Except me. That moment is as clear as the same moment I lived it. For the next few weeks my legs felt weird, I could feel my actual legs, spatially. But to touch my skin, it was numb. I chalked it up to nerves. It was a serious problem and I ignored it. Eventually it passed.

Course #2: loss of the ability to lift my feet. I mentioned that it was an unusually hot summer. The humidity was high and the sun was blazing hot for your typical New England summer. In addition to the pressures of my new job, the pageant, and the after-pageant party planning we had to build a flagstone patio off of our deck. Ourselves. Oh yes, I googled it and watched a couple of YouTube videos and I am also stubborn. We were building that patio and that was that. So for a weekend in July I hauled flagstone up and down, leveled the dirt, put the sand down, mixed concrete, laid the flagstone and boom. We had a patio. Except now I couldn’t lift my feet. I chalked it up to the heat and overworking myself. It was a serious problem and I ignored it. Eventually it passed.

Dessert: double vision. Around Thanksgiving while visiting my parents I woke up feeling dizzy. This wasn’t the first time recently that had happened. The difference was this time I laid there determined to figure out what was going on. In the weeks leading up, I noticed that I was dizzy in my office and found it hard to look off to the right, especially driving. Super safe! I realized laying there that Thanksgiving weekend morning that when I looked slowly to the right I was seeing double. A few days later (a few DAYS LATER!) I called my eye doctor when the dizziness did not pass back in my office. He told me it was not a problem with my eyes. I explained again “you don’t understand, when I look to the ri–“. “No, YOU don’t understand. This is a brain issue, not an eye issue. I suggest you get to the emergency room.” I chalked it up to poor air circulation and no windows in my office. It was a serious problem and now it had my attention. Eventually it passed, except by the time it did I had a diagnosis: multiple sclerosis.

I sat in the neurologist’s office, my heart beating out of my chest as the doctor asked me to look at his computer screen. I saw a white mass and I almost passed out. I thought for sure it was a brain tumor. His words were honestly blurred but all I heard was that it was not a tumor and that it was a scar on my brain. 1.7 cm large. As far as I was concerned, I felt fine. I was a healthy, active 33 year old female ready to take on the world. Invincible often comes to mind. And as the MS slowly deepened its roots through the years I kept on going as I had planned, ignoring, making excuses. When I thought I was walking uphill, I was clearly going downhill. I had ALWAYS been able to overcome. Why was the MS being so stubborn? The MS was perfectly programmed and executing on schedule, it was me who was being stubborn.

I sought a 2nd opinion from a renowned MS center in New York which confirmed the diagnosis. I remember watching other patients stumble in out with varying degrees of disability. I felt separate from them then. That level didn’t seem attainable. The next check box on my agenda was starting a family. It was not contemplating walker styles at Senior Depot. While the doctor reviewed the medical notes I drifted off. Certain moments in time came back, the early warning signs. The electric shock feeling, the massive fatigue enough to bring me down as I would head out for a run sometimes, the random falls that I wrote off for clumsiness in high heels. The MS was there, perfectly programmed and executing on schedule.

Now for the after dinner mint: the decline. The decline was ironically also the beginning of my soulful journey.

The year 2015 didn’t start off right with me. I mean, I was happy but my body was breaking down rapidly and for the first time I felt panicked. My left leg had already been dubbed “my bad leg” and now the right leg was growing steadily more weak. Foot drop, spasticity, weakening hip flexors. Likely delayed damage from a flare-up I had in 2012 when I was pregnant with my son. It was triggered by a stomach bug and progressed to the loss of the use of my legs for 8 weeks. I remember thinking how bad it would be if I ever lost my right leg, the strong leg. I remember sitting on my deck in the warm sunshine telling my mom how I couldn’t just stand up out of a chair, how it was so easy to take the little, everyday things for granted. Although that too eventually passed, the scar(s) left behind on neural pathways in my spinal cord had totally created a barrier and all signal was lost between my brain and body. It was a glimpse of my future. The foreshadowing. There are distinct memories of that time. Distinct moments snapped like polaroid photos that would eventually evolve into my challenges today. Tumultuous is the only way I can describe how I felt in my heart. Desperation was how it revealed itself. When my neurologist looked at me blankly after asking “now what?” as I dragged my left leg and wobbled on my right. Drugs? Clinical trials? Physical therapy? Robot legs? Say something! There was honestly nothing. It was text book. Three lesions were concentrated in my spinal cord and research has shown that lesions in the spinal cord lead to long term disability. That’s crap! The hammer slammed in my mind and I was furious. And then I took my daughter to Panera Bread for lunch. Nothing like a good kale broth bread bowl to soothe. It was at that Panera Bread though that I couldn’t carry my tray from the counter to the table. I dragged my left leg and wobbled on my right, the tray shaking, people staring.

A month later I was sitting in the clinician’s office waiting for the nausea to pass. I had just been injected with an 8 foot long needle. Botox in my right calf to relieve the spasticity. Guess I don’t do well with 8 foot long needles. Fine, it was 8 inches long. Whatever. Then there was traveling to Colorado on business by myself. I overdid it. Refused the wheelchair and Denver is a BIG airport. By the time I reached the cab, I couldn’t take one more step and my feet stayed swollen for 4 days. You’re assuming I was still on my own two feet. I technically was, with the help of a carbon fiber ankle foot orthotic brace (AFO) and a cane. My dad’s cane that he crafted in his wood shop. I walked the perimeter anywhere I went where there was the support of a wall or furniture in case I tripped or lost my balance.

The cane came into regular rotation. Then when I had to walk farther than 10 feet, the walker became my new best bud. Then when I had to walk farther than 10 feet with the walker, I needed a wheelchair. I needed an army of inanimate objects and people, a squad. The amount of help I needed was overwhelming. It was a gut-wrenching overwhelming feeling inside of me. Miss Independent. Miss Can Do Anything. Miss Fix Everything. They were all dying. And all I could do was watch. This is where my soulful journey began.

We could debate the philosophy of how and why people come into your life, whether by chance, by choice or some combination of the two. When I think about the next steps in my journey when I felt helpless, the people, my friends, my family were all perfectly aligned. It began with a book recommendation, The Power of Intention by Dr. Wayne Dyer, which spoke to me so clearly and laid the framework by which I have spent the last two years of my life building. The only way I was going to make it through this life sentence was by looking inward, living in peace and shedding everything and everyone who did not share or participate in my healing journey. Not healing in the physical sense necessarily, but acceptance. I do want to give my body the best chance at halting the progression of the MS and even reversing it but now, above all, peace is living life as it is and not as you think it should be (quoted from Dr. Wayne Dyer). The help that previously felt so overwhelming was what I needed to get out of my own way. And it wasn’t just the physical help to get from here to there, it was the help I received to look within. My body was breaking down and I had to take control. I didn’t really know I had that power. I did, and you do. And I dropped the notion of fixing. Of expecting a specific outcome. I needed to be my best self and if I was always chasing the end result, it wasn’t going to happen. I thought that honesty was utter vulnerability. Honesty is empowerment. I dropped worries and worrying, and I examined what was important to me and focused on making my best effort with what I had. And what I had was MS. And I still have people. An entourage! A medical team, a healing team, a nutrition team, a support team of the most wonderful friends, a supportive work environment & coworkers, and my family, my husband who is the ultimate caregiver and our two children. The ultimate squad.

I saw a video of a friend’s one year old child on Facebook who recently started walking. I laughed out loud because I literally look like that one year old learning to walk. The balance checks, the thud of putting one foot in front of the other, the falls. I cannot walk on my own, but that does not mean my story is over. What I have now is opportunity. I have surrendered to this illness. No, no, no. I will never give up. I’ve just decided to go along for the ride. The difference is that my daily life is spent giving myself the best care that I can. Believe me, there is no perfection in this. There is way more maintenance than I care to deal with. I mean, who gets tired taking a shower? Me, me, me! My daughter and I joke that I am as slow as a sloth. The amount of time it takes to do a simple task is frustrating, so the amount of time I spend thinking about efficiency is even more insane. To cook, when I read a recipe, I have to mentally catalog the ingredients in an effort to conserve energy by making only one trip to the refrigerator, one trip to the pantry. Every step I take is calculated. Every place I go has been researched beforehand, phone calls made to inquire about accessibility. Forget about online ticket ordering. Any concert or show is a direct dial to the venue for disabled seating. I am so gratefully able to work from home. And I cannot even begin to tell you how much my husband and our two children have had to pick up where I can no longer help in our home. It doesn’t sit well with me that I am the center of how we do life now. They have taught me that we’re in this together and we have a wonderful life. I have not stopped trying by any means, no. I have just shifted my energy.

Just like the blank stare of my neurologist, I do not have any answers. All I do know is that if I am trying to do the best I can for myself, I can hang on. Keep going. Some things work, some do not, some work for awhile then don’t. So much to learn, so much to share. There is no cure for MS. I am not discouraged by my decline (anymore). Conversely, I am encouraged. I am empowered. It has brought me to where I am today – unearthing joy in this life. Finding inspiration and inspiring along the way. Stay with me on this journey! We can share together. Ups and downs, wins and tragedies. Strolling or rolling, we got this.

Oh, and if you are still reading this, you may be wondering…I was first runner up in the 2007 Mrs. Connecticut pageant!

 

9 Comments

  1. Laura

    Jodi, you are an inspiration! Runner up? You should have taken first place. I love that you are sharing your journey through your blog and I am happy to share it with you 🙂

  2. Tom Furey

    Jodi Johnson….you are one amazing human being! I have so much respect for you as a professional, friend, mother, wife, & former business partner. Your shift from refusing MS to embracing it is a lesson that so many can learn from. I’ve always said that if someone or some team out there is looking to do something great that Jodi should be part of it. You are now a key player in the MS family and i am a very proud friend. Thank you for sharing your story, it is truly inspiring. And please give my best to Russ, miss you guys!

  3. Sarah Arrants

    Wow Jodi, I had no idea the details of your journey that you have taken and continue to take! You are an amazing inspiration and am a good example of staying content no matter the circumstances!! ♡

  4. Anonymous

    Jodi,

    Thank you for sharing you story. Your skill as a writer and story teller are compelling. Your spirit is amazing. I have known you almost twenty years and have always had the utmost respect for you but never more than today. Best wishes on your journey, you are an inspiration to so many of us with MS.

    Steve

  5. Carol

    Jodi,

    I have learned so much from reading your story. Thank you for sharing. I will continue to follow your story of strength, determination and joy. Thinking of you and your family.

    Carol

  6. Don Henig

    Wow Jodi, I had no idea, but i appreciate you sharing this with us, although your writing style made me feel like you were talking directly with me (another one of your talents!). You’re an impressive and wonderful person and thank you for giving this to me / us. I always stopped to think of what Wayne Dyer really meant by: If you change the way you look at things, the things you look at change – now I get it. Thanks Jodi!
    Don

  7. Carole

    I am giving you a huge hug for bouncing back, despite what life throws at you. And another one for sharing your journey in a candid and gracious way. And one more for being a ninja fighter!

  8. I am laughing and tearful at the same time. Your story is amazing because you are amazing! Some day, I hope to meet you in person. I have known your family through Mary who was such a special friend to my son Gregory who recently passed away. She showed him so much love and I can see that you have her spirit within you.

    My wishes to you for better health and love always…

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