Silver
Several years ago while advocating for disability rights. I wrote this letter and sent it to Sen. John Boozman, Sen. Tom Cotton, and Rep. Steve Womack:
My name is Lori Adams and I'm a 28 year old disabled woman on SSI. Because of recent pushes to reform SSI and similar programs, I feel it is important for me to share my story with you.
I had mysterious illnesses and chronic health issues for as long as I can remember; I don't know if I have ever experienced a full - or even half - day without pain and suffering. For years, I prayed for answers and signs from God to guide me to health. I did everything I was supposed to do - I asked for help and support from others and they failed me. They didn't see me as a person (a child at this point), and I continued to suffer due to their lack of empathy.
Despite this, I continued to fight. I lost so many years and experiences to illnesses. God does not promise there won't be storms, but He promises to walk with us. My storm was a catastrophic hurricane, but I still fought through it. I graduated high school with high honors and earned academic scholarships to the University of Arkansas that covered my full tuition. I wanted to become a research microbiologist and study the gut microbiome.
In 2013, I began studying biology at the University of Arkansas in the Honors College. My health waxed and waned, but I continued to fight against the storm. I missed out on more, but I kept my head above water.
In my junior year, I started to rapidly decline. I couldn't fight it anymore. In December of 2015, I received a call that a lesion was found in my brain; then I cried silently through my final exams.
When I finished my exams, I went back to Van Buren to stay with my parents. I was weak, unable to stay awake for more than four hours a day, my vision would come and go, and I'd often wake up on the floor after I fainted. My only options were to have a risky skull base surgery, or wait for my death and try to extend my time as much as possible. I knew I had to try and I didn't feel that God was ready for me to leave and would do more through me.
“He will sit as a refiner and purifier of silver, and he will purify the sons of Levi and refine them like gold and silver, and they will bring offerings in righteousness to the LORD.” - Malachi 3:3
In Biblical times, silver was refined by holding it in a flame until the refiner was able to see their reflection in the metal.
During my surgery, the neurosurgeon found abnormalities that weren't visible through imaging (MRI, CT, etc). The tumor was partially cystic (fluid filled sac), partially calcified, and partially solid tissue. The pressure in my skull was extremely high, and it appeared that the cystic portion was ready to rupture. When this happens, nothing can be done but wait for death.
I had a massive hemorrhage from a vein that was under pressure. It was as if it was a garden hose with a thumb partially covering it in order to make the stream more intense. I rained blood onto my neurosurgeon, who was working quickly upside down to repair my vein. An adult woman my size typically has approximately 5L of blood and my neurosurgeon estimated that I lost 4L - twice the minimum amount of a level 4 hemorrhage, the most severe type.
Yet, I survived. I had a massive blood transfusion, but unfortunately ran into more trouble as my brain began to herniate. I lost the bottom part of my cerebellum and my brain had to be physically moved back into place. My spinal cord has 2 small “dents” in my neck. To prevent further damage, I was put into a medically induced coma for 17 days. My family was warned that I probably wouldn't wake up and if I did, I probably wouldn't be “Lori” again.
I woke up February 17, 2016. I wasn't able to talk or make significant movements and was locked in. But I remembered everything, felt everything, and it was the same in my mind as before. I mouthed questions to my family and medical team and developed a system of communicating with blinks.
I went through various rehabs and facilities, but my voice and ability to move slowly returned. Hospital staff would visit me just to see the woman who was still there, and still herself. There are numerous people who didn't believe in miracles before that do after meeting me.
It's been years now, and I'm still improving. I've used my knowledge and experience to advocate for other disabled people and to educate others on public health and disability. I've done things that I thought I'd never be able to do and learned more than I thought existed. I've built a website, written a book, taught myself graphic design, educated people on public health and disabilities, and so much more without an end in sight.
I rely on programs like SSI and medicaid to survive. There are so many others like me that do as well. In a labor shortage, there are thousands of us that are an untapped and endless well of skill and grit that want to contribute. However, due to the outdated parameters, contributing means the end of our necessary health insurance and ability to live. So the well that collected the waters of all those hurricanes remains sealed.
I have fought hard to survive. Please advocate for people like me and reforms that allow me and my community to live. I have been refined in the fires, help me shine. Help me show that reflection.
Sincerely,
Lori Adams
