I remember the time my physiatrist, Dr. Kirshblum, asked my parents and I to have a proper sit down: it was exactly three months into my seven-month long rehabilitation. I felt extremely unnerved as I sensed some bad news was coming my way. My face was on fire, my eyes started burning, and tears started welling up in my eyes. He explained to me that sometimes, a syrinx or cyst could develop in the spinal cord after an injury. And that a recent MRI had detected quite a large one in my cervical spine. He then went on to add that this happens to only about 30% of SCI cases. Due to this syrinx, or post-traumatic syringomyelia, a fluid-filled cavity had formed, and now stretched above and below the two vertebrae in my neck that I had broken, and could possibly deteriorate the strength and sensation that was slowly returning.
I was completely gutted. I really didn’t want to know anything more beyond the information that was disclosed in that single conversation. I felt defeated and overwhelmed with the exorbitant amount of information being thrown my way, every single day. Moreover, I could not believe that after all that had happened – after all that I had survived! - this was my predicament.
My newfound reality would include, and still does, a yearly MRI, that is subsequently sent to a neurologist for evaluation. For if this growth were to expand, it could take away any and all motor development and sensory function that I have gained over the past 14 years. My understanding is that a surgical procedure could be dangerous, and like with most things in life, there would be no guarantee that it would be successful. Thus it does not seem like a viable option, for me. So far, I have been lucky; I have not had this secondary issue further impair me. (Although I do still wonder if it is a contributing factor to the chronic pain and chills I experience nearly every single day of my life. I still have those days when my pain level is “beyond a 10 out of 10” and simply characterized best by feeling like someone has hit me on the back of my neck with a metal baseball bat.)
Over the past decade, two concepts have really become the center of my focus: quality-of-life and self-care. The first was explained to me by Janette, a woman who quickly became one of my mentors and best friends. The experiences that led to our spinal cord injuries are somewhat similar and given that she has a few more years on me both in age and experience with the injury, her sage advice became truly indispensable. She cautioned me against the totality of my focus being dead set on my physical health with an insatiable need to walk again. Janette suggested I find a way to build a well-rounded life for myself that included activities and people and stimulation that would not only make me happy but also keep me in a state of Gratitude: for that was what would give me the ultimate strength to rebuild my life.
The second concept of self-care was eventually revealed to me through a Buddhist meditation practice I adopted (although I do not identify as a Buddhist). On one of the most soul-crushing and uncomfortable days of my life, I somehow mustered up the courage to push past the feelings and find a meditation meeting I could go to that evening. Had I not done that, I would not have discovered a group of wonderful people with whom I have meditated with as well as shared deeply intimate thoughts, feelings and experiences with. I learnt that self-care was so much more than any surface level definition I could come up with in the beginning. This particular meditation experience completely changed me, and ultimately, IT SAVED MY LIFE.
I spent a great many years feeling the gamut of emotions between that of a victim and that of a survivor. It took some time, but I finally did enough of the self-analysis and work to recognize that the former does not serve me positively in any way. A few months ago I surprised myself whilst publicly speaking as I blurted out to my audience: if I had to choose between my old life which meant I would walk again, and the way I live my life now – I would not change a thing. That is correct, I would not trade who I have become and who I am becoming closer to being every day that I’m lucky enough to be alive, just to be walking around on my own two legs.
So, I have learnt to be my own advocate. To be mindful, aware. To be the change I want to see in the world. To be the light! The alternative, the antithesis, only furthers the darkness and despair you feel at the low points in your life. Believe me, I know. For I was stuck there for many years…by sharing this - and my life - I hope to at least touch one other person. I hope to save them from the unnecessary suffering we, as humans, attach to the inevitable pain we experience. Furthermore, by choosing to remain open about how I got through what I went through, it reiterates to me, once again, that I CAN do this, no matter what.
Photo: Margaret Malandruccolo
Hair, Makeup & Styling: Melanie Manson