#ThisIsMS

Being positive is not enough. More important than being positive is to be yourself. ~Anita Moorjani

This is probably the most profound, and the most timely, quote I have come across in a long time.

My journey with multiple sclerosis started long before my diagnosis in January of 2008. It is hard to believe that I just celebrated the 10th anniversary of my MS diagnosis. 10 years. Celebrated. There is always the bright side, that is where I try to live on a daily basis. There is always the it could have been/could be worse way of thinking. Regardless of the bright side, the dark side, the could have been or the could be, I am living. Every single day is a journey, a chance to seek adventure, an opportunity to live better.

After ten years my story is a long one. Many of the initial symptoms of MS lit like sparks in my body during my twenties. There were some early glimpses of it that I only realized in hindsight, after my diagnosis and after much research and hearing other MS folks’ accounts of their life with this MyStery illness. I struggle with what to call MS sometimes. Is it an illness or a disease or a dysfunction or what? I guess it has been labeled a chronic illness. The funny thing is, I don’t consider myself ill or diseased or dysfunctional. Maybe some might argue otherwise. All jokes aside, I am very healthy by medical standards except my legs do not work. There is very little commonality in the way each person suffers with MS. You could line us up across a football field and no two people are experiencing the same thing. Sure, there are common symptoms such as fatigue, muscle weakness, numbness & tingling, vision problems, mobility challenges, pain but there is no perfectly square box.  Some of us are not disabled at all. Some of us are very disabled. I’ve had doctors who say the course of my MS is textbook and others who say something doesn’t add up and aren’t 100% confident an MS diagnosis is definite. It has not been a dull journey in any respect.

The brain and spinal cord house trillions of neural pathways that control all the intricate functions of our body. It is fascinating if you stop to think about everything your body does in any one second, one minute, one hour. Every twitch, every heart beat, every blink of your eyes, every platelet of blood flowing, every pulse, every contraction and expansion, every movement from your head to your toes that you aren’t even aware is happening. Multiple sclerosis is a confused autoimmune response that attacks these neural pathways and breaks down the protective myelin sheath that allows the signals to flow freely throughout your body. Once broken down, as with a paper cut or skinned knees, your body’s response is to repair itself and try to rebuild that sheath which ultimately causes scarring. Scarring is not a perfect reconstruction and therefore results in a bumpy ride or no ride at all for your neural signals to reach their destinations. Hence, disruption in many forms. In mind, body and spirit.

Remember that football field of us MS folks lined up with all sorts of different manifestations of this chronic illness? None of our MRI scans would reveal any similarities either. Some of us have hundreds of scars in our brain and maybe no persistent symptoms. Some of us, like me, have very few scars yet are persistently disabled. There is no apparent correlation between lesions and scarring and symptoms. We’re like the Breakfast Club. A group of students, from different walks of life, all enduring a life long detention.

This week is national MS awareness week. I have MS and I am disabled. This is where I am today. I am unable to take more than one or two steps on my own if I am lucky, and even that is a risk because my balance in carrying my body is a zero. I do try though. Sometimes I feel like a circus act, sometimes I like to show off to the kids like “hey, look at me, I can walk today!” when I am feeling super human, and sometimes I just like to try to see if I can do it. I dream about it a lot. Actually, I more often dream that I can somehow run and still not walk at all. I spend a lot of time in my dreams running. Not to get off topic, but is me running my dreams a metaphor for something? In my home I use a walker, or the walls, or furniture to steady myself and get around. Outside of my home I use a scooter. I fall, I get back up. As cliche as this sounds, it just is what it is. I’m not mad at ya. I’ve got nothin’ but love for ya. Thank you, Tupac Shakur.

There are no days off, there is no vacation. Every choice I make is with wellness in mind to stay as healthy as I possibly can. And also to set the best example I possibly can for my children. My daughter is convinced I will walk again in 15 years. That is what her homemade fortune teller told her. My son says that I am just old because my legs don’t work. That is his justification for my use of a walker. Isn’t their perception amazing? And neither of them ever think I can’t. They both make mental adjustments without a thought whether it is extending a hand to help or giving directions on how I am supposed to use my walker or scooter to play their made up game. “Go get your cane!” my son will exclaim.  I am aware that they only know what they know. Where is it in our lives that we stop living so innocently or so fearlessly and without judgment? “We are all just doing what we know how to do and we can’t ask any more of anyone.” Another ah-ha quote I heard in one of Dr. Wayne Dyer’s public television talks that rings so, so true without the bias of anything, during all times and in all relationships in our lives. We are all just doing what we know how to do and we can’t ask any more of anyone. This seems inherent in a child’s mind. Why did it escape ours? From my children there is no judgment, no label to them other than Mom. I am not their disabled mom. I am not the mom that can’t walk. I am simply Mom. The mom that cooks and cleans and hugs and plays. Tori doesn’t remember when I could easily play hide and seek with her stooping and crawling and crouching and jumping back up. Will doesn’t remember when I could carry him up and down the stairs or hold him up to the sky in giggly delight or rock him in my arms standing up to gently lie him in his crib. It doesn’t matter to them and they do not feel woeful over it. Every day they wake up and I am still there for them in whatever capacity that is. Legs, no legs. Love doesn’t have a physical body. I strive to remember this as often as possible. Love does not have a physical body.

In a moment of irony though, and in thinking about my actual physical body, the amount of time I spend strategizing my days to make sure I have enough energy to do this at this time and that at that time is pretty ridiculous. Some days I cannot ride my stationary bike because I need that energy reserve for something else like running errands or going to a friend’s house. I have had to make many, many adjustments in my life and my family has had to make many, many adjustments too. I am kind of like a child when it comes to planning. I am a one-activity-per-day girl. There is no fitting it all in or just one more stop otherwise my body has a tantrum and shuts down. Just like a toddler.

Grateful. This is where I am today. In Stephen Hawking’s words, “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically.” I cannot emphasize enough how true this is for everyone. Every. One. To take this one step further, Dr. Wayne Dyer said, “Once you label me, you negate me.” The power of these messages reach my heart in a deep and abundant way. Similarly, I cannot express enough that we all struggle. Be kind, for everyone you meet is fighting a hard battle. Be kind to everyone and yourself. I wear my disability, my struggle, on the outside. It is obvious. It is not always obvious for those who struggle on the inside. I have written about this countless times. Just know that whatever you are feeling at any given time, there are millions of other people feeling the same thing, albeit a different story. We are one. We are one. We are a universe. Pema Chödrön writes in her book Start Where You Are to drop your story. When you drop your story and leave the safety of your room you are opening your heart to all sentient beings. There are no limits. Concentrate on things your disability doesn’t prevent you from doing well. I genuinely feel grateful to have started down a spiritual path that has essentially forced me to slow down, forced me to look hard within, and forced me to wake up. Forced is also a funny word to use in a spiritual journey. I use it here as an emphasis that I got out of my own way. When I was in my late 20’s with big career goals I had a business coach who told me she wished I could get out of my own way. I will never forget her saying that to me and I remember exactly where I was sitting on my couch, I remember the early morning sunlight, I remember the words so clearly but I did not understand them at the time. The words left me with an emptiness and a big question mark that has bubbled to the surface time and time again these last several years. I have had many moments in my life like that with messages and scenes as sharp as the day they happened. Is there a lesson yet to be learned? Is it foreshadowing of something to come? In this instance all of my actions at that time in my life were driven by my ego. I defined myself by my career. I defined myself by what other people thought of me. Fifteen years later I have finally figured out that the definition of myself is what I think of myself. This time the light bulb stayed on and didn’t flicker out. I got out of my own way. This is not to say that I think of no one else. I care and love deeply. I only recently learned that in order to share and spread love, you need to love yourself first. When you love yourself, and can show yourself compassion and forgiveness, you will have discovered who you are.

And back to my original thought for today, and back to the words of Anita Moorjani, now that you know who you are, go back and live your life fearlessly. To fulfill your purpose you do not have to pursue anything or go and figure it out. All you have to do is be yourself and live fearlessly.

You are whole and perfect as you are.

I am living. And I am finally living as myself. #thisisms

783 Comments

  1. Pamela

    Jodi, I love everything about this. You are truly incredible. I’m so grateful to know you and am so touched by every word you say.

  2. Jill

    Such a beautifully written story. This gives me a moment of clarity and how I need to be grateful each day for something, whether it be big or small. Which has been hard for me this last year as I’m feeling able to do less and less. I always say my issue is my brain has not forgotten what I was once able to do.
    Thank you for shining this light 😊🧡

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