So, How Can We Live our Best Lives Even Without the Cure?
I wrote a bit about my own experiences adapting to my new life after diagnosis in the first part of this segment. I admitted how lost I felt and how much time went by before I made the decision to live as well as I can rather than wait for a cure on the horizon or a miracle from God. Although everyone’s journey to cope with these rare neuroimmune disorders looks so different, I hope some of you saw yourself in me—that the same desperation to be “better” again can at times be universally felt, at least initially.
I also hope that those who are still in that place of waiting to get better have a bit more hope about how to live a good life, after reading these last few articles. Something that has always stuck with me and encouraged me to live a good life even with things being different was when SRNA’s Director of Research and Programs, GG deFiebre shared the following about her experiences with transverse myelitis:
“I have adapted and have amazing people in my life and in many ways, I am happier than I was before TM. Life may be more challenging in some ways due to the inaccessibility of the world and people’s perceptions, and I certainly have bad days, but overall, I am quite grateful for the life I have.”
Life can be and often is still wonderful even when you have a rare neuroimmune disorder. A major part of seeing our changed lives positively is accepting one’s disability. The idea of having disability pride may seem odd at first to a newcomer, but it’s a liberating perspective to hold. As Emily Ladau, author of “Demystifying Disability”, describes, disability pride is “about holding space for both the beauty and the complexity of being disabled. Existing in a disabled body in a world that doesn’t always accept it means that it’s a radical act to honor my disability as an identity, and to celebrate the history and culture that has contributed to so much of who I am.”
GG deFiebre expands on this idea, stating “When I was first diagnosed with transverse myelitis and in the hospital, I had no desire to interact with anyone else with a disability. I had been taught by society that disability was bad, that it was undesirable. I would not have willingly identified myself as disabled in the beginning. I rejected it. I worked so hard in rehab to get back to ‘normal.’ As I began to adjust to my new life as a wheelchair user, as someone with a physical disability, I really had to fight hard against the internalized ableism I felt. I had to learn to see myself as worthy. My worth as a human being was not determined by whether I was walking or rolling, whether my hands worked or not.”
Life is still worth living, and you still have worth, with or without the cure. Accepting my life without the cure and making it my own made me feel human again, after years of biding time until something made me better. I chose instead to lead the life I want.
In a few of the articles we covered, different elements of post-diagnosis life were discussed. The following is what each article had to say about self-acceptance and embracing the life we have.
In Christopher and Dana Reeve Foundation’s Living With Paralysis: Employment for People with Disabilities guide, they explain “Disabilities do not need to limit the pursuit of fulfilling work. Whether seeking a career in an office or building one from home, there are many paths to successful and rewarding employment. Disabilities may affect the shape of a life, but they do not determine what is possible.”
In “Artist’s Choice,” an article I wrote a few years ago, I state “Although I did not choose this life or this body, this is my life. I will not wait to live until I reach a certain arbitrary point of “better.” I recognize that I’ve grown up with this “monster” hanging over me, a foreboding feeling that continually shouted inside of me that something would soon go wrong again. I felt certain that I would go blind again, become paralyzed again, and lose this life I built from less than nothing again. In seeking to fight this fear I was drawn back to art. Art can be a distraction against trauma and a weapon to combat it.”
In “The Importance of Mindfulness” by Tara Duffy, she explains how embracing mindfulness after diagnosis allowed her to cope with her new circumstances, stating that “In terms of my own recovery, cognitive restructuring and meditation changed the way I saw myself, my life, and my diagnosis. I told myself that this time, there would be no running or hiding. I began to meditate and journal, and instead of fighting my pain, I learned to sit with it. This was when I first learned about the psychotherapeutic approach of mindfulness.”
In “An Approach to Managing My Pain” by Jeffrey Berger, he states “TM and all of the neuroimmune diseases affect everyone differently. We all have our issues, some much more severe and some that look invisible. I want everyone to know that no matter your situation, you can strive to make your life as good as possible, work every day to improve your situation and fight for everything you can. I encourage you to believe in yourself and find ways to enjoy each and every day you are given.”
In “A Narrative Approach for Your Health Care Team,” Kate Nicoll tells us to “never let a healthcare professional not appreciate and honor your narrative, ask questions and make them care. This is your life, your story, and your body living with a rare disease. Make them take notice.”
Finally, in “On Loving Someone With a Rare Neuroimmune Disorder,” my partner reconciles with my life and decides to weather any storm in it beside me, saying “Another round of chemo is coming up soon—the second in a cycle that’s going to be a routine part of my life too—and I’m not as scared this time. I know I’ve made the right choice.”
In all, there are many people who have found ways to cope with their diagnosis and who are thriving despite and even because of the circumstances. This is not the end for anyone. And although the cure isn’t here yet, I trust the people who are working on it. I trust that it will happen someday, but for now, I am living. We are living.
