This election is personal — HERstory
Yesterday, I attended an organizing meeting for the local Democrats and the NH Together campaign. I’ll admit that I was flattered when I saw my name suggested as the Engagement Lead; nevertheless I had a moment when I thought “What does it involve, can I do it and do I want to?”. As the meeting came to a conclusion, our area organizer, a brilliant young woman with such passion and a keen understanding of how to make things happen, asked for just a moment more of our time. She praised us on our forward movement and enthusiasm and encouraged us to continue the momentum. But her most important message was a gentle reminder — she asked each of us to always keep in the front of our minds the reasons why we were involved. She spoke of the policies that will be affected by this election. From healthcare to civil rights to equality, she appealed to each of us to not only remember what issues motivated us but to make an effort to tell our stories to the folks we are talking to everyday. Her words reminded us all that we have a duty to connect with our fellow human beings and to illustrate how important each of the issues are, through our personal stories.
Late last night, as I turned over in my head all the information and logistics of my volunteer position, Amy’s speech came back to me. I realized that it was time for me to openly speak about one of the most important issues for me and my family — healthcare. Our family, friends and many of our acquaintances are familiar with our story. Our experiences are a perfect illustration of why affordable healthcare is so critical to middle class families and our journey is the biggest reason I am so committed to this campaign and to Hillary Clinton’s candidacy for President.
17 years ago, I was pregnant with our second child. From the beginning, I had troubles; bleeding at 12 weeks, crippling morning sickness and a general sense of unease. It took us 7 years to get pregnant after our first child so obviously, this was worrying. Unfortunately, at 21 weeks pregnant, my water broke. The conversation at the hospital went something like this: “We are going to do all we can to keep you pregnant however, if your baby is born within the next 3 weeks, we will not do anything to save him/her. We are going to need to discuss funeral arrangements.”
I delivered our daughter Isobel at 25 weeks, 2 days gestation. She weighed 1 pound 8 ounces and was 12 1/4 inches long. There are no words to describe this experience. Other preemie parents have compared it to a train wreck or a roller coaster that never ends. Having a sick baby is surely one of the worst things one can experience. Micro preemies, babies born weighing less than 1 pound, 12 ounces (800 grams) or before 26 weeks gestation, are complicated and fragile beings that can crash at any moment. As a parent, you are living minute by minute, trying to hold it together. It is the most helpless I have ever felt in my life and my husband would likely agree. You aren’t existing in the normal world at all but rather an alien planet populated with beeping monitors and babies trapped in bubbles with machines breathing for them. The preemie birth experience doesn’t follow the typical order of these things. You aren’t ensconced in love and well wishes in your balloon and flower-filled hospital room. Often, there aren’t even congratulations from the people in your life — most don’t know what to say, so they simply don’t acknowledge that you have had a baby.
Once home from the hospital without our baby, I went through the motions of being a mother and wife, but what I was actually doing was counting the seconds until they allowed me back in the NICU to “visit” my child. I have zero recollection of activities of daily life; any memories of cooking dinner or picking my older daughter up from school are lost but I can tell you, in grams, Isobel’s weight on any given day. My heart and my empty arms ached constantly and I felt utterly consumed with worry about Isobel’s every moment.
On the day Isobel was born, my husband Robin was let go from his job. In an instant, we lost our health insurance and any hope of financial security. Isobel’s journey in the NICU was only just beginning and we couldn’t pay for it. A month or so into Isobel’s hospital stay, Robin found another job with a terrific company. They used their considerable leverage with their insurance company to cover Isobel as soon as Robin was hired. Sadly, by that time, we were hundreds of thousands of dollars in debt.
We knew early on that we were only at the beginning of more medical bills — it wasn’t going to be smooth sailing for any baby born so early. We knew that Isobel would need extensive medical care and therapy after leaving the hospital and insurance most likely wouldn’t cover a great deal of it. She had had an intraventricular hemorrhage, defined as bleeding into the white space of her brain, at day 8 of life. She had necrotizing enterocolitis, apnea and bradycardia, a hole in her heart, retinopathy of prematurity, a clubfoot, a submucosal cleft palate, — the diagnoses went on and on. We were just at the beginning of our journey and it had already financially crippled us. We were being swallowed by a medical catastrophe.
Today, our baby girl is a senior in high school. Lovely, poised, funny, bright and creative, Isobel is a testament to the power of hard work; her own and that of all those that have been a part of her life. So many wonderful teachers and therapists, physicians, nurses and paraprofessionals have helped Isobel achieve her promise. We have been so incredibly fortunate to have the team of people that we have. Isobel has taught us so much about the indomitable human spirit.
While we can say that we have come out the other side of our experience there have been long term consequences. You don’t get off the preemie coaster for free. The price has been very heavy for our family at times but here and now, we are intact, happy and thriving, thanks to an incredible support system and a determination to overcome. Not everyone is so lucky or has the same helpful circumstances. America is the only industrialized democracy where medical bankruptcy can happen and so many of our citizens die each year of diseases that could be treated, simply because they could not afford to go to the doctor.
Americans spend twice as much on healthcare per capita than any other country in the world but despite that, we are dead last in the quality of our healthcare. I read a quote that sums it up so beautifully; “Medicine is not a commodity to be sold to the highest bidder, but a right that must be distributed equitably to one and all.”
Hillary Clinton has promised to defend and expand the Affordable Care Act. Currently, that ground-breaking law covers 20 million people and while it is, in my opinion, inadequate in many ways, it is the basis for our healthcare future. Americans now have the benefit of rights and protections such as the elimination of gender discrimination and guaranteed coverage of pre-existing conditions. I truly believe that Hillary will stand up for this law and build on it. I also have great hopes that she will ensure that Americans have a public option. We need Hillary Clinton because she is the most qualified person to move this issue, and so many others, forward.
The key to preventing similar medical disasters like ours from happening to others is electing people that are committed to implementing a just and egalitarian system. I consider myself to be a progressive Democrat on nearly all social issues but I also believe that we achieve things in this country through a measured and pragmatic approach. Those of us that identify as Democrats, whether moderate or progressive, are not enemies and we have a civic duty to fight for what is right, from within and without the system. This is my call to action to those of you that share my ideals. I need your help. I need you to volunteer in your local campaigns. I need you to help ensure that the kinds of struggles that we endured — the endless phone calls from debt collectors as our baby lay in a isolette, struggling to breathe, the worry about if we could afford the brace she needed to help her walk or the therapist that was helping her to learn to eat — doesn’t happen to another family. We needed to be able to concentrate our efforts on her — not the stacks of bills. Please consider electing someone that has a proven record of championing family issues and was talking about healthcare before it was hip to do so. Elect someone capable of improving what we have and laying the groundwork for universal healthcare in the future. Elect someone that knows how to bring people to the table and search out solutions that work for all. And even more importantly, elect people that will support those ideas, up and down the ballot. If you support the idea of universal healthcare, you must vote for the Democratic ticket. The other side isn’t invested in the middle class or its concerns and endorses and promotes a candidate that cut off the health insurance for a member of his family, when they had the gall to challenge his father’s will. In regards to voting for a third party, this is not the time for such things — use your vote down ballot to make sure progressives are in office to support Hillary Clinton and to hold her to the promises of her liberal platform.
America is a great country. It’s a country of tremendous freedoms and opportunities. When it works well, it is a beacon to others and when it fails, it is a sharp warning. Our family’s financial future was permanently damaged by a medical catastrophe. This shouldn’t happen in our beautiful, wealthy, intelligent country. The idea of healthcare for all is so much more than a political issue — it’s a moral imperative. I’m with Her and I hope you are too.