Life After SCI
Despite the very horrific nature of my SCI (Spinal Injury Cord) and losing not just my mobility, but the lives of my cousin and unborn child, I celebrate life every year. This year on June 22, 2016 I am celebrating ten years of what I call my, “Wheeling Birthday”.
When I laid in ICU hooked up to life support, sustained by IV’s, blood transfusions, a very heavy piece of metal bolted to my head (halo), I was told I was facing the possibility of being dependent on a breathing machine, being paralyzed from my neck line down, and never speaking again; all I could think about was, “How am I going to be a mother to my kids?” Grounded in my faith I began praying and fighting to gain back as much movement and independence as possible because I knew my children; 13, 8, and 6 years of age at the time still needed me.
Medically the focus on SCI recovery is treating:
- Onset of injury
- Inpatient rehabilitation
- Outpatient rehabilitation
During those three transitions the patient is inundated with information about SCI and how to “adjust” to a new way of living, most of which you forget. You re-learn the basics: how to eat, talk, shower, use the restroom, and brush your hair. What we are also introduced to is how to use our new legs, our wheelchair. We learn how to transfer in and out of it (if we can), how to physically use our new chair, for me it was a power chair, and how to understand the importance of paying attention to accessibility (curb cut outs, ramps, and wide doors). Once we have, “plateaued” in our rehabilitation process and therapists can no longer devise rehabilitation goals for insurance, rehabilitation stops, but our life with SCI does not nor do the many other transitions life with SCI has to offer. Some are fortunate enough to continue their rehabilitation through private paid programs, unfortunately, that was not an option for me. My focus was set on getting back to being a mom as soon as possible.
It took about two months post injury for me to regain my ability to speak again and my halo was removed after four months of inpatient rehabilitation. After being evaluated by three ears nose and throat doctors, eight long months later, I finally got my trachea removed. With family support and my mother as my caregiver, I regained full custody of my kids and got my own apartment approximately 5 months post injury. In a little less than a year it would eventually be just my kids and I, a quadriplegic mom, living independently and thriving despite all of the challenges; social and physical barriers, financial and emotional burdens, spiritual and physical brokenness, and simply trying to mourn the loss of who I use to be.
There is no real “treatment” or manual to follow post outpatient rehabilitation. I relied and continue to rely highly on peer support to get me through the many transitions of SCI. Through peer support programs I learned about adaptive living and have had the opportunity to: surf, sail, ski, hand cycle, dance, zumba, paint, and learn about ways to care for intimate needs such as: catheterizing, bowel programs relationships, and even sex. What I have not learned through peer support has been self taught, mostly trial and error just as I did as an able bodied person.
While there have been many struggles the past ten years, pain management, chronic UTI’s, PTSD, financial stress, family drama, the loss of many friends and still waking up in the middle of the night sometimes thinking that the past ten years was just a dream, I can honestly say I am a better person post injury. I have accomplished so much in the past ten years: Ms. Wheelchair California 2013, Producer/Host of Wheel Talk Wheel Issues, numerous awards and recognition for my work in Ability Awareness, lead peer support and ministry groups, and an awesome job as Director of Strategic Strategies at Axia Management.
Embrace the New You
I would not trade who I am today for who I was ten years ago for anything. Not even to walk again. I value life more now than I ever have before. On this ten year anniversary not only do I celebrate my Wheeling Birthday, I celebrate a new beginning. For the first time in twenty three years I will be living alone. My oldest daughter is now 23 years old and raising two beautiful daughters of her own, my 18 year old daughter just graduated high school and will be going off to college in August, and my 16 year old son is in boarding school called Job Corps preparing to join the Navy.
As I think about the next ten years ahead, I am a little anxious, but not afraid. I know that through God anything is possible. I look back and remember that scared 32 year old pregnant single mother of three who lost so much and was told she would never walk again. I preserved passed every adversity, fought every challenge, achieved my highest potential in every endeavor, and raised three really awesome kids despite a SCI.
I can not wait for what is next! I am working on finalizing my book, Tragedy to Thrive, expanding Wheel Talk Wheel Issues followers through a Youtube channel, and more modeling and media opportunities like the upcoming Raw Beauty Project LA taking place in September.
Life does not end after a SCI, a new very different kind of life simply begins! It is a second chance to accomplish new goals and become a part of a new diverse community. Follow me on Wheel Talk Wheel Issues to learn more about life as a wheelchair user and get the peer support you need to get through the many transitions SCI has to offer. Get inspired by guest speakers with inspirational stories just like mine showcasing their talents and success post SCI.