A Lifelong Burden and the Policy That Made It Easier to Bear

Diana, David, & Julia - 1994

Diana, David, & Julia – 1994

On an unseasonably warm day in February, 1989, my life turned upside down.

I was 11 years old. My mother was six months pregnant with twins, and for three days had been having horrible leg cramps, which her doctor had told her was from the babies’ pressing on a nerve. He said it would pass in time and cleared her for normal activity. I went outside that afternoon with my mother – newly approved for light yard work – to clear some soggy leaves from around the hedges that bordered our driveway. It was so warm we wore only light shirts and jeans and could smell the soil and wet leaves as the last spots of snow melted from around the bases of the trees. We agreed it was a great day to be alive.

After we’d been outside for an hour or so, we were surprised to see my father pull up to the house at 3:00. This almost never happened; he was in-house counsel to a software company and rarely left before nightfall. We soon learned the reason: my father had lost his job, a casualty of the sine curve of tech industry growth that shapes his professional life to this day. He had also lost his health insurance.

Three days later, my mother was rushed to the hospital in premature labor, where she clung to life (and babies) for three days until a fever of 104 and ruptured membranes forced an emergency C-section. Turns out her doctor had failed to tell her is that in twin pregnancies, leg pain is a classic sign of premature labor. I remember my father taking me to the hospital after the delivery. Though we didn’t speak about it, I knew that I was being taken to say goodbye. My mother’s whole body was swollen and unrecognizable from infection. The babies, born so early that my parents had not had time to name them, looked more like science projects than people in their heated incubators in the neonatal intensive care unit (called the NICU and pronounced “Nick you”). They could each have fit in my father’s hand, though their skin was too papery thin for such an experiment, and their eyes were sealed shut like newborn puppies’. Every time a new needle was added to the tangle of cables, wires, and tubes that kept them alive, their faces contorted in silent agony because the breathing tubes blocked the sound of their cries.

Four months after that, and against all probability, my mother, brother, and sister were still alive. The twins had names. They spat up and drooled. My brother David was the youngest male baby in a set of twins to survive without permanent and debilitating effects from his early birth (his name is still in a book of medical firsts somewhere). My sister Julia escaped with minor cerebral palsy from a brain hemorrhage, common in babies born so early, and post-traumatic stress disorder triggered by Brahams’s lullaby, because that was the song the music box in the NICU played.

The hospital bills were in the hundreds of thousands of dollars. By the age of 12, I knew how to talk down a credit card interest rate, how to squeeze an extra few days out of the account reps before the dreaded DEFAULT stamp came out.

It bears noting that the very existence of a middle-schooler who knows how to play good cop/bad cop with herself while on the phone with a debt collector is a pretty grim indicator of the way this country treats its middle-income families, but that’s a story for another day.

* * *

Two years after his birth and record-breaking survival, David’s pediatrician called in a panic. The final blood panel of his last regular premature baby checkup – the one where he was supposed to graduate from being “a very sick baby” to being just “a baby” – had revealed extremely elevated levels of the enzymes ALT and AST, released when skeletal muscles, the heart, or the liver are in distress. Because premature babies are prone to serious heart and organ issues, the pediatrician feared heart or liver failure. Instead, a few weeks later, heart and liver functioning fine, David was diagnosed with Duchenne muscular dystrophy (DMD), one of the most serious forms of muscular dystrophy that exists.

An X-linked recessive disorder, DMD affects male children, who have only one X chromosome, while women with the faulty gene, who have two X chromosomes, carry this gene and can pass it on to male children but don’t get sick themselves. I remember sitting in the hospital waiting room with my parents, holding my lucky rock and old enough to be embarrassed by the superstitious belief that maybe, if we all touched the lucky rock in the right order, the news would not be terrible. I remember my parents sobbing when the news instead confirmed everyone’s fears. The diagnosis had nothing to do with David’s prematurity. Mother didn’t even know she was a carrier. It was, the doctors explained, just a case of really bad luck.

Boys with DMD are generally wheelchair dependent before 10, and few live past 25. They slowly lose the strength to walk, to use their arms, to chew, and finally to breathe. The most fortunate die peacefully when their hearts are unable to function any longer; others die of blood poisoning from pressure ulcers, of pneumonia, or simply from being too weak to fill their lungs with air. When David was five, he started using a wheelchair part time. When he was seven, he needed it to go anywhere. Due to their physical issues and delayed development (most children who were severely premature catch up by around third grade, but before that they can have lots of difficulty), the twins were home schooled. Our insurance company at the time, Blue Cross Blue Shield – I am in no way exaggerating when I say that the logo still makes my heart race with anger when I see it – bullied the school nurse for the district into releasing information about David’s enrollment. They repeatedly denied coverage for his wheelchair, arguing that since he “didn’t need the wheelchair to learn” it was not a medically necessary expense. The trouble with wheelchairs is that they can cost almost as much as cars. You generally can’t just slap one on your credit card and hope the claims paperwork works out in your favor.

Blue Cross eventually relented in this matter and others, but only after a months-long negotiations during which my brother had to, among other things, be carried from place to place, an increasingly humiliating situation for him, which also led to permanent repetitive stress and nerve injuries for my mother.

Preexisting condition clauses, endless bureaucracy, coverage limits, and garden variety mean-spiritedness on the part of the insurance companies, who were allowed to do unspeakable things to sick people by the limited law of the land (and sometimes in spite of it), kept my family financially crippled for years, but because my father had degrees from Ivy League universities and was a practicing lawyer who knew the limited ways the law protected us, we were much, much luckier than most. We managed to hold onto our house and afford most, though definitely not all, of the medical care recommended for David and the rest of the family.

* * *

I had learned I was a carrier of DMD after getting genetic testing at the time of my brother’s diagnosis. Because I knew my status, genetic testing would make it possible for me not to pass the gene alone, and even the exorbitantly high cost of these tests (or skipping childbearing altogether) seemed a small price to pay for knowing the legacy would end with me. I felt fortunate simply to not be sick, to have an active and able life ahead of me.

But in 2003, when I was 25 years old, I was in the process of a protracted recovery from an injured right ankle the summer before. When the cast came off, something felt wrong. My left leg was clumsy and weak on stairs, and I needed to support my weight on the handrail, which had never been true before. For a while, I figured it must be due to the extra work the good leg had been doing as I recovered. Yet instead of getting better as my ankle healed, the good leg got worse. I went to my doctor, who was equally baffled by my symptoms and scheduled an appointment – weeks in the future, naturally – with a neurologist.

Meanwhile I did some reading. It turns out that what I had not been told at the time of my genetic testing, and what few doctors outside of high-level muscular dystrophy research know, is that a smaller portion of carrier women are known as manifesting carriers, which means that they manifest a mild form of the disease. They may have muscular weakness and be particularly prone to repetitive stress injuries. Or they may have unusually easy childbirth due to poor muscle tone. Some women have sudden, massive heart attacks, which have few warning signs without regular electrocardiograms to show early indicators that one is looming. One woman went from strong and healthy to having to crawl up stairs in a 10-year period. My symptoms were consistent with hers.  And then I remembered the blood test: the previous summer, my doctor had called me up thinking I had hepatitis or advanced liver failure. Did I have unprotected sex with multiple partners? Drink heavily? Take intravenous drugs? No, no, and no. The enzymes responsible for her alarm were ALT and AST. My liver was fine.

At my appointment I told the neurologist my family health history and showed him the research I had done. He looked at me and said, “Well then, it’s probably that.” My world imploded. And then my 15 minutes – all the time he had to spend with me due to the insurance policies that held us both captive – were up.

* * *

At the time I told only my boyfriend and two close friends. I was so crushed by the news that it would take me over a year to work up the energy and optimism to battle for coverage of more genetic testing (denied twice, then approved when I sent a handwritten note to the CEO of the company demanding to know the warped version of reality in which knowledge that could prevent my bringing a child into the world to die horribly was in any way unnecessary, medically or otherwise) and a visit to a specialist who could provide a more detailed prognosis (approved, shockingly, on the first request).

By about the beginning of 2005, I knew I needed to start talking about it. Terrified that every new appointment made me even less insurable than I already was and unable to advance professionally because my need for insurance tied me to jobs I had long since outgrown, I was falling apart emotionally. I cautiously started telling more of my friends and loved ones: Yes, I had a genetic disorder.  No, I didn’t know what was going to happen. Yes, platitudes about how “I’m going to beat this thing” aside, it was truly, profoundly awful. The reactions were mixed. One boyfriend in the years between my diagnosis and my “coming out” more publicly said he loved me but that the possibility of me getting sick made the issue of long-term commitment “complicated and stressful” for him. He outlined the ways in which he felt I was likely to be a bad investment, asked me to be supportive of the pain this caused him. Used to being bullied and devalued by insurance companies for years, who badgered and criticized and withheld until they had me and my family thinking our imperfect health was a thing to apologize for, I half agreed with him. I’m ashamed of how long I stayed.

(One of the most crushing things about the health care debate is that it forces you realize how deeply the idea of a sick person in need as the perpetrator of some act of greed, irresponsibility, or both is ingrained in the psyche of even people who may have become very close to you.)

* * *

In 2009, at age 19, David died after a heroic struggle with his disease, and an equally heroic struggle with the insurance carriers that were supposed to be prolonging his life, but instead never ran out of ways to deny, renege, and sidestep their responsibility to actually provide health care in exchange for the exorbitantly high premiums my family paid. He was among the lucky ones: after a day spent feeling unusually fatigued and sleepy, he went to bed early, and never woke again. Every day I feel wronged on his behalf, and think of the time the insurance companies robbed from us, the hours and hours we could have spent celebrating his life and having fun, instead of fighting insurance companies’ sociopathic (but at that time mostly legal) fixation on their profit margins.

I’m 34 years old, still walking, and planning to keep it that way. I can’t run, jump, or climb, and sometimes when I’m tired my leg collapses without warning, so I tend to have a lot of scraped knees (I’m often mistaken for a skateboarder, which is hilarious to me). I am also at increased risk of sudden cardiac death due to the heart risks associated with the carrier syndrome. But with regular cardiac checkups, my doctors expect me to remain healthy and mobile until the end of my life, which is unlikely to be hastened by my condition, and with genetic testing in early pregnancy, I will be able to make responsible decisions about becoming a parent.

I am also insanely fortunate to have a partner who loves me more than I ever believed was possible and is willing to stick by me for all of it – whatever “it” turns out to be. But it’s an awful feeling to know that only a slight bout of misfortune – a lost job, an error on a health insurance application form ferreted out by an insurance employee who would like nothing better than to cut me loose, a change in policy, one of the multiple knee surgeries I will likely need in my lifetime – could turn my life, and the lives of those who care about me, upside down. As terrified as I am about a potential worst-case scenario’s impact on my immediate physical wellbeing, it’s the effect such an event would have on the people who love and need me that makes me feel truly awful.

The other thing that makes me feel awful is when people say things like “My tax dollars aren’t going to pay for your health care!” or “Pay for your own pills!” When they say things like this, I know what they are really saying is, “I think it’s fine that all these things happened to you and the people you love, and faced with the option of letting a few of my tax dollars change things profoundly for the better, I wouldn’t, because I’m not sick and it’s not my problem.” This strikes me as odd, since my tax dollars pay for their roads, their police forces, and their schools. I have never once asked for my money back, because I believe all people (even ones who aren’t me) need and deserve vital infrastructural things like these, and I can see that even when I’m not sick, I benefit when my fellow citizens are happy, healthy, and whole.

* * *

I will always remember the day the Affordable Care Act was passed. I was working at a health nonprofit, surrounded by researchers and practitioners who knew what a huge burden the ACA had lifted for the sickest and most marginalized Americans. Cheers and laughter erupted from all over the office – not the cheers and laughter of partisans who’d won an important political victory, but of people who knew the data, knew the lives that would be saved.

Here is what happened to me: I thought about how soon, no insurance company would be able to force me out or deny me coverage for being sick, withhold for months the preventative care that could save my mobility or my life, or cause me to become financially destitute through predatory self-interest. I thought about how for the first time I felt like the idea of becoming a parent might be a responsible decision, and I could count on being a healthy and strong mother to my kids – who would also be healthy and strong thanks to genetic testing. I thought about how for years, none of these things had been imaginable for me. I thought about how if David were still alive he would be so happy and relieved to know that his needs had become a responsibility for insurance companies to fulfill, not a loophole for them to squirm through with impunity.

And then I burst into tears.

On June 28, 2012, the ACA, together with all the protections it ensures, was upheld. On that day, Chief Justice Roberts did something that will save the lives and livelihoods of countless Americans and their loved ones, whose only crime was the misfortune of being sick. I’m one of them. Please believe me when I tell you that there are many more.

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24 thoughts on “A Lifelong Burden and the Policy That Made It Easier to Bear

  1. Reblogged this on Another Boomer Blog and commented:
    She says it all.

  2. Thank you for expressing with great eloquence what happens with so many.

    • beedashbee says:

      Thank you! I believe if the cold hard data isn’t moving people that sometimes human narratives can. Hope it works…

      • My daughter has Roussy-Levy Syndrome (CMT1 on steroids). Unlike your brother she will live a normal life span but with debilitation. She has same age friend with DMD who is in his 30’s because he needed steroids as a child for asthma. Kids who got steroids lived longer and they’re typical now. She was involved with MDA and most of her friends died long ago. There are three of them left, including her.

        In addition to Roussy-Levy she has three heart problems (unrelated) and various other problems. Despite her debilitation she graduated with highest honors at her university and was inducted into a national society for the best individuals in her career path. I kept her on my insurance as long as I was allowed to do so.

        Two years ago she became unable to work. Her husband is divorcing her and attempting to deprive her of his medical coverage. She is presently hospitalized. When people talk about denying others health care they may be talking about someone like my kid, someone like a friend of mine who is terribly disabled (in a wheelchair, needs a ventilator, functionally blind and deaf because of a strange virus she contracted as a missionary) and yet she graduated law school and adopts children no one else will take because of their severe disabilities. My works at foundations that pay almost nothing and depends upon Medicare for herself and Medicaid for the kids, but they are growing up into functional adults who can contribute to society instead of languishing in institutions.

        Keep fighting for understanding. So will I. I reflagged your post.

  3. Carolle says:

    All I can say is: It’s about darned time that we ALL have a chance at decent health care. Thank you for sharing your story. I can’t say it was “uplifting”, but your willingness to share the ugliness of health insurance helps me a lot…I’m not a lone ranger over here!

  4. Not reflagged, sorry, reblogged. Dratted autocorrect.

  5. [...] thing that was particularly difficult about my July 1 posting on the Affordable Care Act is that I generally am incredibly wary of/loathe first-person “Here is [...]

  6. coryellen says:

    Diana, you made me cry and cry. Thank you for writing so eloquently about everything you’ve been through and continue to go through. My own twins were born at 36 weeks, and had only two weeks of NICU time, and our medical bills were still over $250,000. Arguing with the insurance company was my full time job during my maternity leave – at one point they actually declared oxygen medically unnecessary. Thank god for the ACA.

  7. Kevin says:

    Thanks for writing this. It’s equally eloquent and emotional. I’m grateful the Affordable Care Act was passed because there are so many stories like yours and so many people who will no longer be persecuted for being ill.

  8. beedashbee says:

    Thank you everyone for sharing your comments and stories. Really amazed by the overwhelming response to this so far. Really hoping the 2,300 views (and counting!) I received in two days help to raise awareness and reverse some of the wrongheaded thinking about health care in the United States.

  9. Claudia says:

    I have posted this on my FB wall, and urged my “friends” to read it because it is so well written and even more, so thought provoking. I want your story to make people think… I don’t see how it cannot. Thank you for allowing me to read it.

  10. So moving. Thank you for writing this, and especially for the observation:

    “One of the most crushing things about the health care debate is that it forces you realize how deeply the idea of a sick person in need as the perpetrator of some act of greed, irresponsibility, or both is ingrained in the psyche of even people who may have become very close to you.”

    I can’t tell you how often my daughter’s disability is seen as some sort of scam so we can get her a smaller class size, or necessary public school transportation, or speech language therapy. Or how people work hard to make her disability my fault: ate this or that during pregnancy, bad genes, too much TV, you name it, we brought it on ourselves. Probably so we could get that school transportation for her. Not.

  11. [...] Affordable Care Act: and Act of Mercy 4 07 2012 I’m reblogging “A Livelong Burden and the Policy that Made It Easier To Bear”, written by Diana at beedashbee.wordpress.com. It’s her story of [...]

  12. Julia Indigo says:

    Thank you for writing this. I’ve FBed and tweeted it. Your story is remarkable, and you’ve told it so well! I think you’ll blow through 2300 views. It could easily go viral.

  13. [...] Support health care for someone who’s sick, or may get sick and be unable to afford the cost of their care (so, for everyone). [...]

  14. Essie Bruell says:

    I have lupus and care for a family member with a chronic disease. Until the ACA, I worried daily that we could lose coverage and take that rapid descent into lack of necessary treatment and poverty. I am appalled at the greed and self-interest that runs rampant in our country. In the very least it is counter to the effective running of the country; at worst, it is unAmerican. I will post your narrative in every way that I can. The hard facts and widely available data don’t seem to sway people. Hopefully, all of our personal stories will.

  15. beedashbee says:

    Essie, Claudia, Corryellen, Carolle, and others: thank you all so much for sharing your own stories and for your words of encouragement. These sorts of interactions are so incredibly important to raising awareness and holding corporate insurance providers and the politicians that defend them responsible for their actions and ending the atmosphere of impunity surrounding the abuse and exploitation of the sick or at-risk. Sorry also for my slow reply – have been traveling and right now am posting from my crackberry on a Megabus, a situation whose potential for both motion sickness and typos makes it non-ideal. But many many thanks for sharing your stories and mine, and wishes of health and wholeness for all.

  16. [...] readA Lifelong Burden and the Policy That Made It Easier to Bear, and shared it on my Writer [...]

  17. Thanks for sharing that story. Wow. These are issues we don’t have in New Zealand – luckily – where there has been universal state-funded health care for all, more or less, since 1938. It didn’t happen easily – there was opposition from the UK where loans had to be raised to help fund it, but the Prime Minister who brought it and a lot of other welfare systems in, that year, made clear that as far as his government was concerned, no New Zealander should suffer as the previous generation had suffered. None should be left ill and unable to care for themselves, or destitute and homeless, as had happened before. He summed up their policy in two words. ‘Applied Christianity’. Kind of sums it up, really.

    Thanks again.

    • beedashbee says:

      Matthew, I love the phrase “applied christianity” — my own secular leanings aside, I find it funny and sad how many professed “Christians” in this country show by their views and actions that they are opposed to applying their values when it counts.

  18. Christine says:

    You just described my life. Different condition, but that doesn’t matter, does it?

    • beedashbee says:

      Christine, no, it surely doesn’t matter – particularly not to corporations that view us as merely sources of profit or a liability. Glad to know the ACA is helping you too.

  19. Amie Cousins says:

    I found this via a friend’s FB wall and read it on my phone, then emailed it to myself because I wanted to make sure I could leave a comment and thank you for telling your story. It knocked the breath out of me. Stories like this do make a difference, and I hope yours travels far. Living in Australia, I know our system has its issues, but it’s hard to imagine this situation — and so incredibly wrong that you’ve lived it. I’m so glad what lies ahead will help.

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