I want to preface this blog post by saying that I do not have a long-term disability. However, for 16 years of my life, I suffered a life-threatening illness –an illness that I was told that I would either a) die from or b) never fully recover from. Time and time again during those 16 years, I was told to give up hope for any semblance of a normal life, or just resign to dying prematurely. For 16 years, I believed that I should not have hope and there came a point in my journey when I finally gave up all hope and I resigned myself to dying. As fate would have it, on the very same day that I had resigned myself to dying, I ended up having life-changing encounters with human beings who inspired me to fight back and begin the journey to reclaim my hope. Reclaiming my hope was not easy, to say the least. It took me two long and arduous years to reclaim my health and to restore hope, overcoming the odds that were stacked against me. One of those odds was my insurance company –it had told me time and again that I was not sick enough to have my medically necessary treatment covered by insurance. Those two years of fighting for myself, fighting back against the mental defeat I felt because of insurance telling me that I didn’t deserve benefits, during those two years, there were times when it was incredibly hard to hang on to any semblance of hope. I had to remind myself that, “Hope exists. If for no other reason than the Dictionary says it’s a word.”
After I fully healed from the illness, I took my newfound hope and went on to serve as Policy Director on Capitol Hill for a small non-profit dedicated the illness that I had once suffered. In that role, I advocated to raise awareness of that disease, and to get a Federal Bill passed on behalf of people suffering that disease. Once again, the odds were not stacked in my favor. I ended up spending over 10 years advocating with that tiny non-profit on Capitol Hill. During that time, I lost more people to the disease than I can count (meaning, they died), and I heard from people all across the country who had lost loved ones to that disease. Trust me when I say, despite my faith in God, it was not always easy to remain hopeful –I admit that, at times, my hopeful spirit dimmed. But finally, in December 2016, provisions from the bill passed. That day in December was one of jubilation…and yet of humble quiet. The passage of the bill was subdued because it was long-overdue and long-awaited for 16 years, especially by the family after whose daughter the bill was named. The bill was named after Anna Westin who died in 2000 after insurance denied benefits for her treatment.
On ‘the Hill,’ I learned many things. One of the most eye-opening things I learned was: No matter how worthy the cause, the odds are stacked against you if you want to get a bill passed. In fact, in 2016, out of the 12,000+ pieces of legislation that were introduced, only 3% (three percent) passed/were enacted into law.