My baby is about to turn 7. This time of year sparks a charge for me, because as I hold him and look into those gigantic brown eyes, I remember how terrified I was three years ago at this time.
As much as I wanted to crumble and hide from the world, I found myself planning Julian’s 4th birthday. We were keeping it small and low key because I didn’t have the bandwidth to plan a big party and was not feeling very festive. Just a few grandparents, some paper plates, a small cake. Nothing fancy. One week following this birthday, I was scheduled to undergo a double mastectomy. Then as soon as I could be up and walking I had fertility preserving IVF treatments to begin. As soon as those precious eggs were harvested, I would move on to begin 5 months of chemotherapy. I had my marching orders. I numbly moved forward one inch at a time, so afraid, and so blind to any possibilities that might exist in the future. I dared not dream or hope for too much.
Nothing was guaranteed to me then, and I still think that had it not been for Julian and my husband Joey, I might not have found the inner strength to go through with any of it. For a moment I imagine not having had these three years and I remember that every minute of this has been a gift. I look into Julian’s handsome face, those baby dimples still tucked away at the corners of his smile, that broad forehead and eyebrows like his dad’s, his mouth and chin just like mine, and I’m near losing it -in the middle of a Sponge Bob episode.
I swallow back my tears because emotions are confusing for Julian to grasp. He studies my face when I wince from a backache and asks me if I’m sick. If I languish in bed too long he will ask if I am dying. Still. While autism has impaired his ability to read emotions, it has also given him an iron trap memory, and a keen intuitive sense. I reassure him as much as I can, but I can’t undo that hellish year.
I think of how hard or perhaps impossible it would have been –to have arrived in this same place without adequate health insurance. I lost my employer based coverage just 2 months before that breast cancer diagnosis, and if there was any good fortune, it was to have been diagnosed during the Obama era and the age of the Affordable Care Act (AKA Obamacare). As I write this, secret plans are being hatched behind closed Senate doors. I wonder what kind of protections will be afforded to people like me –people with hereditary or congenital conditions, as well as people with chronic conditions that require lifelong support.
I didn’t have to fight for every single immune boosting shot that enabled my chemotherapy to continue. I didn’t have to beg for anti-nausea medication. I didn’t have to squabble with the insurance company to cover my anesthesia during any one of those 4 surgeries.
I want to hope that we can reach across our differences and create a cohesive safety net for the most vulnerable among us. It is truly heart breaking to hear about real human suffering, and consider the cold calloused manor that health care is viewed when looking through a political and financial lens. We are treading in dangerous territory when we cut the heart feelings from this conversation, when we look at human life solely through the filter of a budget and start to assess which lives are worth saving.
I’d like to invite any Congressman or Senator who has voted (or who will vote next week) to do away with the ACA in favor of the American Health Care Act to come to my home. Come meet my little boy. Tell me that my life wasn’t worth saving. Tell me that I will still receive adequate follow up care and that I will still be able to afford treatment if cancer ever returns.
My understanding of the impacts that the American Health Care Act will have include: (the following synopsis quoted from https://www.thebalance.com/how-could-trump-change-health-care-in-america-4111422)
States will be allowed to waive several rules of the Affordable Care Act.
- First, the rule that insurance firms must charge the same price to every person of the same age, regardless of health. That rule protected people with pre-existing conditions. The ACA made insurance companies charge the same rate for those with pre-existing conditions as they did for healthy people. In states that waive the rule, chronic disease sufferers would pay much higher rates.
- States could also waive the requirement that companies offer 10 essential health benefits. Each state would define its own list of essential benefits. Once an illness is removed from the list, insurance companies can reinstate annual and lifetime limits.
Melissa Eppard lives in the beautiful Hudson Valley, NY area with her young son and talented musician husband. She loves gardening, hiking, poetry, art, music and spending time with her family. As a Life Coach she knows that life is more than a sum of our losses and seeks to ignite the spark of purposeful living and creative fire in everyone she meets. www.MelissaEppardCoaching.com