Open Letter to Senator John McCrae 7 20 17
I found myself crying this morning over breakfast when I was thinking about your diagnosis and the battle that you are about to face. At a very early age, I watched my Mom fight to survive her colon cancer. I can never forget the day she was rushed to the hospital and had to have over 12 blood transfusions. I was 7. I was confused most of the time she was sick and wished, for that Mother’s Day, that I could just give her more blood. I did not understand.
I heard words like “chemo”, “radiation,” “final plans,” “funeral home,” and “fly my body back home to Tennessee.” Everything was a whirlwind and as an adult, I’m still trying to put it all together in my mind. My Mom spent time away the next few years in and out of the hospital at Johns Hopkins and other Maryland hospitals. Like yourself, we were lucky to have health insurance, though my parents had to take on some of the debt.
My Dad had a tumor in his neck when I was in middle school. Again, I was scared and did not quite understand. I remember when his surgery was over and he had to be taken to the car in a wheelchair. I didn’t understand why he was in a wheelchair if the tumor was in his neck. Gratefully, we had health insurance.
A few years later, my Uncle Bubby became sick. Only by the grace of the Most High Doctor, I was able to donate my kidney to him. We went to Vanderbilt in September 2005 and had a transplant. My Uncle and I are both doing relatively well and grateful we’ve had these last 12 years together. He, like yourself, fought in wars across the seas. He had health insurance and because of the transplant, he has been able to be in the lives of grandchildren and great grandchildren that were born post 2005.
Last year, my endometriosis was eating me up inside. I was sick. Because of the insurance offered to me by the Affordable Care Act, I had full coverage. I was able to get a much needed hysterectomy. I could see my therapist. I had access to my medications. Thank you.
My cousin Leslie died of an aggressive form of breast cancer. Again, as a young child, I did not really understand. I knew that Leslie always treated me special, like her Momma, my Aunt Frances. One of my favorite memories of Leslie was when she came to pick me up and take me to the fair. She took me to TCBY Yogurt! We laughed, sang music, and rode in the country for what seemed like hours. She was so full of life. She would come visit my Mom and family and Maryland and arched my eye brows for the first time! Over the course of just a few years, the life and brightness in Leslie’s eyes and body began to dimmer as the cancer ate her up from the inside. I was so young. I remember saving the tops of cans because they were donating these to cancer research. I thought if I saved enough of these, my cousin would not die. Leslie had insurance, I think. I think perhaps there was a cap on her insurance. I am not sure exactly why Leslie died, I was too young to understand, but she is gone.
Senator McCain, before the ACA, I had medical complications and was diagnosed with Inter Cranial Hyptertension/Pseudo tumor cerebri. I did not have medical insurance and could not get insurance because of the “pre-existing” medical due to the kidney transplant, even though I was a donor. A few years later, I was able to get back on my parents’ insurance because I was under 26. After 26, the jobs I had did not feel like health insurance was a right and that I could afford it on my own. At the time, in 2012, the coverage I needed would have cost me ¼ of my income. It was unaffordable and I was getting sicker, needed medications, and was not well. I went through a period of having employment and insurance, being underemployed and no insurance, being unemployed and no insurance; it was a mess. I was not well. My physical body was not well. My emotional body was not well. My spiritual body was not well. I was out of balance. My insides were eating away my life. I was afraid. I was afraid I was going to be like my Mom, Dad, Uncle, or cousin.
What would happen to me if I didn’t have the coverage I needed? I would die. Not, this is not fatalistic. It is truth. My life did not matter to the folks on Capitol Hill. I was “irresponsible” and looking for “entitlements.” No, I was looking for my basic humanity to be affirmed. Not to get political but entitlements are stealing land from people and creating a system to indefinitely create a broken people who will be forever internally displaced to benefit from their labor and make a small ruling class richer. Our water is poisoned, we’re gathered in large zoos without access to fresh food (food deserts in these urban cities), and now our access to basic health coverage is limited, at best.
Senator McCain, when I was a seminary student at Wesley Theological Seminary, I worked at the General Board of Church and Society at 100 Maryland Avenue on Capitol Hill. I saw you on innumerable occasions. I recall a day that you were standing by yourself, outside my building. Other Congress folks walked past you and did not acknowledge your presence. You tried to catch a car but couldn’t quite raise your arms all the way. I remember the hot sun beating down on you in your dark blue suit. I wasn’t sure why you were alone but I felt the weight of your soul and your loneliness connect with mine. In that moment, I could feel your spirit. Over the next few months, we shared space, but I was just in the backdrop. I sat across from you several times in the Congressional dining hall. Every time, you were by yourself. I was always with a group of people, all of us on our Blackberries, thinking we were important. But that’s what The Hill does to you. As I watched you sit by yourself, I wanted to say something. I recall the teachers who isolated me for years in grade school. Now, as an adult, I have deep and profound social anxiety. From K-8th grade, I was physically separated from folks my age. No one had the courage to tell the teachers this was cruel and damaging to my soul and spirit. I’m sorry I did not say anything to you then, not that it would have necessarily mattered. Your life matters and I see you.
In 2008, I voted for you in the primary because of the moments I felt connected to you. I’ll admit this now publicly. However, during the General Election, I voted with the Green Party. I voted for you in the primary because of your dogged strength, resilience, and ability to get the job done. I thought you would see me and know, inherently, that my life matters, at least as much as yours.
Right now, Senator McCain, the world is praying for your health and recovery. I am sure you and your family are taking it easy and focused solely on your care and plan of treatment. You have access to the best doctors in the world and not to mention, the research of our armed forces. You are wrapped in love and light and I too, am holding you in the light. A candle is lit for you on my makeshift altar here in Charlotte.
However, Senator McCain, I have Medicaid right now. I was diagnosed at birth with being born Black in a racist, supremacist system. Unfortunately, there’s no cure. It’s terminal. My body is sick and I am afraid. Afraid of dying by having a heart attack or stroke at home, alone and afraid of being killed by the state, directly or indirectly. My life is at risk, everyday. I have been to the Emergency Room twice in the last month. The first time I went, they had to put me on oxygen and my BP was critically high. The second time, I had to determine whether or not I wanted to go because I knew, with my Medicaid, I was not going to get the treatment I needed. I was in so much pain, I could not see well, I passed out twice, and I could not stop vomiting. I went to the ER and they called me a “transient drug seeker,” a “low income case,” and never even asked me to change in to hospital scrubs. I overheard the doctor telling the nurses that we had scripted this well and I had convinced my friend on what to say so I could get drugs. Because of my Medicaid, I did not have the medical access I need. They did not refill my prescription, perform an EKG, or address my high BP at all.
Yesterday, I went to my PCP for the first time. I was relieved, finally, we were going to get to the bottom of this and I could get the much needed referral to the cardiologist. It should also be noted that I was almost three weeks without the appropriate medications I needed for my Complex PTSD (you know about PTSD from your own experiences) and my blood pressure. I was taking deep breaths and texting my Uncle to let him know I was getting things checked out. To my Uncle and my family, my life matters. Well, the nurse called my name and as I was walking back, the front desk let me know that my Medicaid does not cover doctors’ visits. WHAT? I was embarrassed, humiliated, and unsure what to do. Yesterday, my BP was 168/118. It was imperative that I saw the doctor. What should I do? They looked at me as my skin was literally turning red and my eyes began to narrow and I swayed with pain. I became light headed and they told me to take deep breaths. I made the decision to see the doctor and deal with the financial consequences latter.
Senator McCain, this is what has happened to me consistently since I have been an adult in this country. Due to having to make this choice to value my own life, time and time again, without the appropriate health insurance; I like many others have fallen into medical debt that resides on my credit report. I would need to make hundreds of thousands of dollars per year to pay this back and my student loans. Because of this, I cannot get the much needed financing to launch my business. I’m trapped in this world of interlocking supremacy systems that is designed to keep me from affirming that my life matters and I deserve to live. It’s easier on the system if I die or become complicit.
Unlike yourself, I do not have family living with me. Each time I go home, my anxiety is raised. I live 35 country minutes from the nearest hospital. The closest friend I know is 50 minutes away. My house phone no longer works and my cell phone gets spotty reception at best. I am having anxiety because there is no one there to know if I have a heart attack or stroke. There’s no one else there to recognize the signs if I can’t recognize them myself. But more importantly, I do not even have the health insurance that I need because this system says that not only does my life not matter, Leslie’s life didn’t matter, but our lives don’t matter as much as yours.
Senator, each day, when I wake up I give thanks. Throughout the day, I have become hypervigilant of letting people know about my medical conditions because I do not have access to life affirming healthcare, I often feel trapped in this poverty cycle (the more I try to climb out and start businesses, the further repressed I feel - all of this is connected... these banks and CDFIs say and affirm that my life does not matter as much as yours…), and I wonder what will happen if I die. I was supposed to have seen the cardiologist weeks ago but my health insurance won’t cover it and I can’t afford it out of pocket. I am supposed to be on different medications but they are expensive without the appropriate coverage. A 30 day prescription would cost me over $400, out of pocket. Each day I wake up I have to reconcile the fact that this country’s leaders think that ripping away my health care is what’s best for the country. In layman’s terms, we call this genocide.
I want to live and have life abundantly. The healthcare system and my Medicaid has diagnosed me “high risk,” and is sending me to death row. My life, as is debated on Capitol Hill, does not matter.
Senator McCain, I will continue to pray for you and hold you in the light. Just like your life, our lives matter too and yes, we are “entitled” to have health insurance that affirms our dignity and worth. When we’re sick and get diagnoses, it doesn’t trend. The nation doesn’t stop to discuss. We die, silently.
I hope you can see that my Mom, Darlynn, her life matters. Larry’s life matters. Dale’s life matters. Starla’s life matters. Robert’s life matters. Frances’ life mattered. Leslie’s life mattered. Laura Amber Arnetta McCrae’s life matters.
Thank you for allowing your soul to share vulnerability with mine in those moments. I’ll continue to hold you in the light.
I will say: John, your life matters. Cheers to you, John.