Rebecca Wood – Virginia
I started fighting for health care during January of 2017. Prior to that I had never been to Capitol Hill or had an interest in politics. My daughter Charlie was born ten hours into her 26 week of gestation she weighed one pound 12 ounces and was the size of my hand. I joined the healthcare fight because her birth is a pre-existing condition and even with private insurance she relies on a Medicaid waiver for much of her care.
Charlie celebrated her sixth birthday last month. When the big day arrived I thought about that tiny one-pound baby in the NICU (neo-natal intensive care unit), her underdeveloped lungs fought for each breath. She winced and recoiled every time her thin skin was touched. I feared we were asking too much of her.
Yet Charlie fought to survive. Mostly I remember the shock of how my seemingly normal pregnancy turned our lives upside down within a matter of days. Unbeknownst to me this is when my fight for healthcare actually began.
Her birth taught me that there is no such thing as good insurance. In my scramble to fulfill her healthcare needs I disputed automatic denials, sought out affordable services, and fought to receive the benefits included in our insurance coverage. Despite the obstacles we were lucky I was able to find services for her: OT (occupational therapy) gave her the use of her hands, she wants to be a doctor and a drummer. PT (physical therapy) made it possible for her to run and jump. Speech therapy is why she can talk and say “mommy I love you,” the sweetest words to my ears. Her developmental progress far exceeded her doctor’s initial expectations. However, all of it came at a cost.
I had to make impossible choices: should I pay for her therapy or my overpriced asthma medication? Choices like these really aren’t impossible – I choose to pay for hers and go without mine.
One day I needed an expensive dental procedure. Unfortunately it was at the same time a therapy payment was due. Charlie’s speech was emerging. I was afraid we would miss a window of opportunity in her development if we cut therapy. I chose to pay her therapy payment and put off my dental procedure. The decision cost me dearly.
Due to the delay an infection spread throughout my mouth and jaw. I went to the emergency department because the swelling in my mouth obstructed my airway. After a course of IV antibiotics I was discharged. The next day I had all of my teeth pulled, the infection drained, and parts of my jaw scraped away in a six-hour procedure under local anesthesia… I could not afford to have it done under general anesthesia. I cried the entire ride home afterwards.
I don’t know what the worst part is – the excruciating pain, how I worry whether I’m drooling when I smile, how eating is awkward and challenging, or how I love jazz and I’ll never play the trumpet again?
In addition to the things that we can’t get back – like time, opportunity, and quality of life – my family was financially devastated by the health care system. These losses are why I started to work towards Medicare for all.
I’m lucky she survived. I’m fortunate she thrived. However, it shouldn’t have cost me nearly everything.
Her name is Charlie – she is why I decided to fight. But my battle for Medicare for All is for me. I have to believe all of this happen for a reason.
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