The Three Truths

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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

1,415 Comments

  1. Tara

    You’re amazing. Thank you for your bravery and honesty. Thank you for reminding me that I am not alone, and being a voice for those of us that don’t speak up. I read your words and they feel like mine…only so beautiful🧡

    Reply

  2. Carole

    Your blogs always give me food for thoughts! This one is no exception. My one cent is that if you want to be happy that day, you can be happy! But if you have decided you want to be miserable, then you will be miserable, no matter how great the day ahead of you is. So when planning a fun day with the kids, another lesson is that they can either make it fun or miserable, it is all in their hands, not just in yours as the organizer… Love!

    Reply

  3. Brother Ryan

    ‘When you change the way you look at things…’ – has been life changing for me as well. It is not only a scientific concept known as the observer effect, but it also shows me that dissatisfaction lies in the depths of the reality built/developed in our mind. I can choose to either disconnect myself from a broken world, or I can realize that I mirror the world. In the latter case, if I observe something as broken, then I am broken. The good news is that if I change the way I look at the mirror, then it changes. As if it, and everything in it, is connected.

    Reply

  4. Bonnie Reed

    Jodi,
    I saw your article in MS momentum magazine. I decided to look up your blog and I’m so glad that I did! This entry was probably just for me. Like you , I have quite a story with my MS journey.
    My MS went undiagnosed for 7 years as they could not figure out what was wrong. When it was finally diagnosed I went from walking, to a cane, to a Walker ,to a wheel chair in 4 short years. I had A wonderful husband who did not let MS change our life more than It had to. He would tell me that it was simply no big deal and we had each other and the children and we would be so happy. And we were, And As grandchildren started coming it was even better.
    Then one horrible Tuesday morning in January 2014, the alarm went off and I could not rouse him. He had died in the middle of the night, At the age of 52. He was my partner, best friend, and 75% of my caretaker Support. What on Earth was I going to do?
    We did not have time to figure things out because from that day on, I needed care. My son stayed a few days and my wonderful girlfriends got me through a week and a 1/2. I was blind with grief and had no idea what was coming.
    My children made the decision to put me in the local nursing home. All of us had volunteered there or sang with groups there, And it was a very pretty place.Within one week I had lost my husband, my other dog, and 90% of everything I Owned.Talk about stress!
    Anyone who has ever interacted with the nursing home, knows that it can be very pretty to the outside eye and very devastating on the inside. With very few exceptions there is often a corrupt administration and caretakers who don’t care. There’s often a lot of Neglect and the feeling that people were dumped off just to die. Being the fighter that I am, I think the only way to cope with my grief was to take up the cause for the residents and staff who were treated unfairly. This did not make me popular with the nursing home administration.I was extremely unhappy and missing my husband terribly and wondering why someone did not come and rescue me.
    Now 5 years later, and 3 homes later, I have seen the unthinkable and witnessed terrible things that no one should see. I have been a 100% cognitive, alive, and bright woman stuck in places where people scream all day long and wander confused through the halls and have been subject to theft. If I wrote a book about my experience, everyone would say for certain that it was fiction Because no 1 can believe what goes on in these places.
    Thankfully this year, a program became available that allows a person with a disability who can handle it to transition back into the community. Without any help from family or friends, I negotiated the unknown waters of embarking on this program. As with many government programs it had a lot of bumps and a lot of people who did not want to do their job. I picked up the slack and made more phone calls in the last 6 months than I ever have in my life. The result is I will be leaving the nursing home circuit in a month to live in my own apartment. I will have to have aids come in to care for me since I am a paraplegic. I know that will result in its own challenges, from what all the social workers have told me. But, I will finally be free!
    Choosing my attitude ,and continuing with my small business Of a painting and quilting and fabric arts along with playing music are all that saved me in this horrible atmosphere.
    I look back at the 1st year after my husband died and I don’t know how I even got through each day.But somehow I did. The strength that God has Built-in Women and disabled people is amazing. We are not just a person on a scooter or in a wheel chair or with a Walker. There are War wounds so deep no one can even Come close to Understanding. Every once in a while we need to be reminded about expectation and attitude, and for this I thank you for your blog.
    Best wishes for a wonderful holiday season with your family! Cherish every moment that you have with them and your husband..

    Reply

    • Jodi

      Bonnie, thank you so much. Yours too is a story of hard fought resilience and courage and breaking down the barriers of fear. Thank you for finding me, reading my words and connecting. This has touched me and I know holding on to your truth that you would once again emerge makes your husband proud. I hope the new year brings you a lot of joy and regardless of the challenges you may face, you’ve overcome so much that I doubt it will be any more than a drop in the bucket. Stay strong!

      Reply

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