When Others Automatically React With Pity to My Disability
There was a time I would have not known what to say to a person living with chronic illness. I was a high-powered business strategist, living my life on airplanes, traversing jetways in four-inch stilettos and giving keynote presentations across the country. I had no idea what it would be like to live a life with physical limitations. Then it happened to me. My life changed in a single moment when the tailgate of my SUV fell on my head in between business trips. Although the injury was classified as “mild” (because I didn’t pass out), it changed my life instantly.
I am no longer the high-powered business woman. Most people today don’t even know me as I was before the TBI, they only know who I am today – a woman living with dysautonomia, chronic migraines, adrenal insufficiency, post-concussive syndrome, hypopituitaryism and more…Interestingly though, I don’t think I have changed; no, I feel I am the same woman, just no longer wearing a mask and living with some new challenges.
In my former life, I was like most people – it felt awkward to be in the company of a person living with chronic illness. I mean, what do you say?! That’s why I try to have empathy toward those who fumble over their words in my life today, as I have been in their shoes. But I will be honest, there are times when I have a strong reaction – and that is especially true when it comes to pity.
I recall speaking with a female authority figure a few years ago about my disability accommodations. Although I am not required to disclose the details of my disability, it can be helpful to give context given the way I process complex information. As an example: I have synesthesia as a direct result of a traumatic brain injury six years ago, and I take notes in color. To the average person it might look like I was disengaged and doodling, when in reality I am using color to capture complex lines of paradoxical thinking via my right hemisphere.
I am an “acquired savant.” That means I suddenly developed artistic talent in the wake of a life-changing traumatic brain injury. I could not paint before the accident; after the TBI I was literally an insatiable artist. This is the “new normal” for me.
As I conveyed my story to the very professional looking woman, just as I have done many times before, she sternly looked at me and said, “Wow, there must be so much grief.” My first reaction was surprise, followed by anger. It took me a while to understand why her statement evoked such a big response inside of me. Upon reflection with my counselor (something I recommend for anyone adjusting to life with a disability), I realized I didn’t like having someone project their feelings onto me. This is especially true given that grief isn’t the emotion I associate with my healing journey. For me, my path is one filled with gratitude and grace, even when it has been messy and difficult.
Truthfully, I am happier than I have ever been in my entire life, even with the limitations imposed by living with disability. There is a strange kind of balance in my life today. On the one hand, I am living the life of my dreams – I live in the country, surrounded by old growth cedars, with a menagerie of animals (including goats) and my lovely 9-year-old daughter. At the same time, I live with my fair share of struggle – and even as I write this I am coping with physical pain of an unknown origin. In fact, I am on my way to the Mayo Clinic this week to attempt to get a diagnosis.
See, I love my life. Even with the flaws, and even as I take every courageous step toward greater healing, I embrace this moment as absolutely perfect exactly as it is. I no longer hold the belief that “I will be happy when…” No, I choose to be happy now.
As I look back on the conversation I mentioned earlier, I have a different awareness. People have assumptions about chronic illness. I have observed that they attempt to empathize from their own perspective, without any ability to grasp what life is like for those of us that have a physical disability. They try to imagine what it would be like – and then they experience the shock, horror and/or fear that comes with the recognition that life could change in an instant.
This is at the root of pity – it isn’t about me or my condition; rather, it is a person struggling to imagine what it would feel like to live in my shoes.
Isn’t it remarkable, then, to realize my life with chronic illness – most people’s worst nightmare – is filled with a depth of love and gratitude I can’t even begin to put into words? And so I paint it. I use the gift of synesthesia to express that which cannot be said in human language. I take notes in color. I embrace the ways I am different, because those are the gifts…and I try to be patient with my body because this is the vessel that carries me through life.
In my opinion, the most challenging aspect of living with a chronic illness is coping with the opinions of others. That is why I have placed authenticity at the core of my journey. The more I become willing to
authentically be who I am, regardless of what other people think of me, the more I cultivate my freedom and ultimately my happiness.
I am not going to ask people to stop pitying me. Instead, I am going to dare to live the life I have been given with my courageous vulnerability acting as a cornerstone of strength. Perhaps being open about this imperfectly wonderful life might show even one person that joy and pain can live side-by-side, and when it happens to them – because some kind of life-threatening condition will happen to all of us – it will be OK. Just as stated by one of my favorite authors Anthony De Mello, “Though everything is a mess, all is well.”
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There are terms to describe my creativity…words like “Synesthesia, Acquired Savantism and Accidental Genius” are all thrown about among experts talking about how I suddenly discovered the ability to paint in 2011 after a Traumatic Brain Injury. But this isn’t just a story of painting; it is my experience of transformation. I was an award-winning entrepreneur and nationally recognized business strategist in home health and hospice before the “mild” traumatic brain injury that changed my life. I was married at the time, at the pinnacle of my career, with a 2 year old daughter. In between business trips, I went to Costco to get a bag of cat food. While loading groceries, the hatch/tailgate of my SUV suddenly dropped on my head. Although I never lost consciousness, my life changed in an instant. Immediately, my career ended and I began a walk into the unknown. Shortly thereafter, I discovered that I could paint. I was not an artist before the accident; but suddenly, painting was as easy as breathing. With a new language – that of color – I transformed into an insatiable artist overnight. This is what it means to be an Acquired Savant. I am self-taught, and I have never taken an art class. I simply sat on the floor of the art store and allowed my hands to explore what felt right. That was the Summer of 2011. I am very fortunate that I do not have many of the tradeoffs that go with Acquired Savantism; Dr. Treffert calls this scenario “Accidental Genius.” My journey through art heals me, even as I continue to discover new health conditions as a result of the injury. I have Dysautonomia (POTS), Pituitary Dysfunction, Adrenal Insufficiency, Migraines, and other issues that impact day to day living. Still, I feel called to help others. Today, I am the same person that I always was; I have simply deepened in ways I never could have imagined. With my CEO days in the rear view mirror, I now study Theology – I’m getting my Masters of Divinity. I spend time with people that live outside – they are my teachers. I have a little menagerie of animals including goats, bulldog, cats, fish and horse – my horse is my physical therapist. I paint constantly in order to express the inexpressible. And…I am a single parent to a beautiful daughter – she is my greatest gift.
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