Sunday, September 24, 2017

Living My Dream Life Even with Chronic Illness

Rising Courage
Original Art by Heather Thompson, Blue Phoenix Art
Published in The Mighty Sept 2017

There was a time that 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 4 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 that I have changed; no, I feel that 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 that fumble over their words, 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 woman 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 that 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 that 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 that I didn’t like having someone project THEIR feelings onto me. This is especially true given that grief isn’t the emotion that 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 that my life with chronic illness – most people’s worst nightmare – is filled with a depth of love and gratitude that 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 that 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 that I become willing to be 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 life the life that 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 okay. Just as stated by one of my favorite authors Anthony De Mello, “Though everything is a mess, all is well.”

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