On Instagram last week I posted a photo of words that I wrote on a construction wall near a restaurant I frequent in Maryland. The wall is intended for graffiti, at least temporarily, while the shop next door is being renovated. I was in awe of the mostly inspirational messages written there. A lot of wisdom. A lot of heart left in Sharpie marker on rough plywood. Some dreams, some hope. And for the words written that weren’t necessarily meaningful, like Fortnite Fortnite Fortnite over and over again, they weren’t negative either. I am always touched that so much positivity exists in the hearts of people and I wish, I just wish, we could all shout it out loud a lot more.
One of my favorite podcasts always ends with three truths. The three truths are your personal mantras for living your best life. Three pieces of advice you would pass on to your family and friends at the end of life, in the absence of anything else. No books, no journals, none of your life’s work. Just you, being given the chance to share your three truths. When presented with this graffiti wall, I felt compelled to write my own three truths, at least as they exist for me right now. And so I did.
- We are one.
- Expectations are a buzzkill.
- When you change the way you look at things, the things you look at change.
As someone living with a chronic illness, who is also physically disabled, I face adversity daily on a very personal level. I am forced to live slower simply because I cannot move fast. My limbs don’t always move on their own so my arms have the double duty of being arms, and also helping to lift my legs one step at a time. Prior to having MS I was rushing through life and I didn’t even realize it. Chasing one thing to the next, and the things I was chasing weren’t my dreams. They were things I thought I was supposed to do, to be successful, powerful. So for me, slamming the brakes on my life, smelling the rubber burning off my tires and having to accept life with the mobility challenges that I now face, and also an uncertain future, my only choice was to begin down a personal path to healing. And by healing I meant the ability to walk again and carry on with life as if MS didn’t happen. Picking up where I left off with the power rush through life conquering one goal after another, running in high heels and clearing hurdles like an Olympic sprinter. With not a single thank you or ounce of gratitude to the people I elbowed along the way. Except, I’ve learned some funny things along that way. MS did happen, and there is no way of taking it back. I also learned that in my chasing of things, I was running down a tunnel with major blinders on because I was independent. And I suppose my definition of independent at that time looked a whole lot more like being selfish. Taking what was mine. Is there such a thing as mine? Don’t we scold toddlers for using that word? And then when things didn’t go my way I blamed everything and everyone but myself. I looked at everything like a competition. There is an irony in my illness that is hard to put into words. I broke myself in spite of myself.
Somewhere in the last almost four years I experienced a reality check. The realization didn’t appear as a pin dot on my map of life. I think it looks like a lot of colorful flags waving in the breeze. Marks that I was there, that I hit an ah-ha moment, that I survived, forgave and moved on. I read a lot of books and listened to a lot of podcasts and watched a lot of YouTube, putting into practice many methods of healing. To get my legs working of course. My only problem in life was that my legs didn’t work. I mean come on, am I right? I must be blocked somehow preventing those glorious neural pathways from communicating efficiently from my brain to my body. Surely, I can fix it all. I always had before, hadn’t I? H-E-C-K no. I mean heck yes, I was blocked. I was blocked from living my truth, I was blocked from living with purpose, I was blocked from loving myself deeply and loving others deeply. I began to heal in a way I never expected. I reacquainted myself with my self.
You can live in whatever truths shape you to be the best version of yourself. The truth is different for everyone and we all have to go in search of what it means for ourselves. I am not trying to force anybody to see life through my lens. All I want is for you to see how I am surviving.
We are one. One community of warriors. One community of many voices finding a way to live our best life.
In a separate Instagram post I wrote briefly about isolation, one way in which social media ultimately can help, in the absence of personal comparison of course. With a chronic illness, especially when that chronic illness is as unique as the individual it can be hard for your normal support network to consistently understand. Everyday annoyances accompany chronic illness on good days, not only on the bad days. Accepting that we are one also establishes the growth of your empathy muscles. Empathy is not a born-in trait. It is a learned behavior and needs to be regularly exercised. In that same manner, empathy can be learned at any time in a person’s life. Empathy by definition means the ability to understand and share the feelings of another. Practicing mindfulness is one way to connect with empathy. Bridging the gap between an experience and a reaction, by just one breath, to observe the moment without judgment is a basic powerful tool for you to see yourself in the situation, gauge how you feel, how your body feels and what’s happening around you. If you’re following hashtags related to your illness or things you identify with, then do so with that simple intention: to connect with others. However, a note of caution. The real tight rope here is that true face to face human interaction cannot be replaced by technology alone. Emotion is written in facial expressions, body language and behavior. The words typed into a 1 X 1 box can never fully display raw emotion regardless of how many emojis and what type of punctuation is used. Social media is one source of connection that broadens the warrior community of people fighting together. We are one, in empathetic understanding, as long as you realize your worth is not measured in likes and followers.
Expectations. Expectations somehow almost always equal disappointment. Expectations assume a level of perfect that goes beyond hopes and dreams. I learned this loud & clear first after having children. For some reason if we planned a special event and hyped it as such by announcing it to our children as “this is going to be SO fun!” the day almost always ended in tears by them or us and was met with lots of hurdles and unexpected challenges that made everyone grumpy. I was constantly dumbfounded. How could my daughter not think this was the most amazing thing ever? How could we end a day on such a sour note? A day loaded with tears and exhaustion and unkind words and feelings. At first I blamed over-stimulation. We’re all tired. We stretched the day too long. Then I realized I was imposing my expectations on everyone else. So when the day didn’t go as expected, the disappointment and frustration skyrocketed. It wasn’t up to me to determine in advance if something was going to be SO fun! It was up to me to plan a day. That’s it. No more. Could I hope and dream that the plan would go as imagined with lots of smiles and giggles and wonder and joy? Of course. When you hope and dream you give yourself the margin of the unexpected. You give yourself the margin to switch gears as necessary. You give yourself the margin to be present and pay attention and experience the gift of living in the moment.
When I went from cane to walker to wheelchair I mistakenly thought all problems were solved and our family outings would be SO fun! Um, not even true. Whenever I set out with supposedly having it all figured out, the days again almost always ended in tears. Mostly mine. Because I felt like my MS was ruining everything. It wasn’t. I was ruining everything by having this strict, inflexible ideal that things would go the way I wanted them to, expected them to, with zero margin for error. Once I was able to recognize this I began to change. I prepared the best I could and we left the house with the best intentions possible. We, as a family, acknowledged that some things will go great and some will not but that we will always try, go with the flow and have fun. And, if it’s not fun then we’ll figure it out.
Expectations bring on their own level of anxiety and stress that none of us need. My symptoms are especially triggered by stress. There is a direct correlation between how well I am able to move and how stressed I feel. Expectations = control and that is not a fair assumption. You can only control yourself, your happiness and your reactions.
When you change the way you look at things, the things you look at change. I first heard this statement by Dr. Wayne Dyer. For me, it brings we are one and expectations are a buzzkill full circle. If you seek control, consider taking control of this phrase with every ounce of your being. It will change your life. It changed mine. Once I understood the core of this simple message I stopped fighting against the grain. The concepts of surrender and acceptance are so hard. So hard. So, so hard. I could not help but feel that by surrendering I was giving in. If I accepted my life for what it was I was giving up. Isn’t that the great chase? To never sit idle, never rest in satisfaction, to keep stomping goals? Slaying the career ladder, having it all? What does that even mean, have you asked yourself? I never got the chance to ask by my own discovery. My arm was forcefully twisted in an epic wrestling match between myself and my illness. Only now I realize it was really between myself and my self. Stop looking at everything or anything as a challenge, a problem. Look at it for the beauty it holds even when you are being one million percent tested to see any beauty at all. Multiple sclerosis is not beautiful. It is not. The way I have chosen to live with it is beautiful. I am not on fast forward any more. And no longer because I feel forced, but because I enjoy slow mo. I can breathe. You have a choice. Make the right choice. Peace is living life as it is, not as you think it should be.
Yes, I have MS. We are one. Yes, I live with the challenges of chronic illness every damn day. No expectations. Yes, I am the happiest I have ever been. Even without full use of my legs, my mind & spirit see life with fresh eyes.
With love, Jodi