Is it hard? Yup, you betcha! Do I pray I will wake up from this nightmare tomorrow? Yup! Do I cry sometimes? Yup! Do I feel sorry for myself? Sometimes, yup! Sometimes my day’s mantra is “fake it till you make it.”
One joy is that in 2012 my children, Amanda and Rob, decided to honor me by having a Walk in my name, bringing attention and awareness to this disorder called Transverse Myelitis, and raising funds for The Siegel Rare Neuroimmune Association. From that endeavor, I have met others like me, who walk this road with me, and my life has taken on a meaning and purpose I never envisioned. The love and support from my family and friends sustains me beyond words. And nine years later, I am so very grateful!
So, I now write as a Hope Ambassador for The Siegel Rare Neuroimmune Association, filled with gratitude for their work over the years to bring attention to this horrible condition, as well as other neuroimmunological disorders. It is an incredible organization, begun in the kitchen of their founder, Sandy Siegel, inspired by the love for his wife, Pauline.
Video from the 5th annual walk to raise awareness: