‘I recorded videos to be played at my funeral. Something was waiting to latch on and rob me of my years.’: Fanconi Anemia patient puts embryo transfer on hold during Covid-19, ‘I want to be around for the rebuilding of this world’

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Life With Fanconi Anemia

“I am decidedly not done living. When I was one and a half, my older brother and I were diagnosed with a genetic disease that was considered a childhood illness because patients did not survive to adulthood. When I was four and a half, my brother died, one week after his 7th birthday. I have grown up with this disease. Every year I survived, the scientists and doctors dedicated to eradicating it would push up the age expectancy. When I was a kid, it was 7. Now that I’m 28, it’s 33. Fanconi Anemia and I have grown up together.

Courtesy of Mary-Beth Johnson
Courtesy of Mary-Beth Johnson

Fanconi Anemia (FA) is a genetic DNA repair disorder. In short, it means I have a weakened immune system and have a high probability of experiencing bone marrow failure, leukemia, and early and aggressive cancers. So when I tell you I’m not done, I’m saying from the posture of someone who closely understands death. As a college student, I used to record videos to be played at my funeral that were supposed to make my family (namely my parents) and my loved ones laugh. I kept them in an untitled folder on my computer. I didn’t plan to get married. I planned to live out a beautiful and ambitious career, but I could never think more than two or three years in advance. I understood my own mortality better than most, and so I packed a lot of life into my years.

Then, in my junior year of college, one of my good friends asked me out. I could write volumes about our love story: how he makes me feel safe, adventurous, never too much, and always enough. How I experienced pride in my womanhood in a new light because he mirrored my strength back to me. He made me feel complete all by myself so joining in togetherness felt like extra and more than I could ever have planned for.

Courtesy of Mary-Beth Johnson

Benjamin shattered my illusion I would ever be comfortable with a short life. He made me want more. He made me want to bury my parents. He made me want to envision myself as an old abuela with an apron on, giving loads of unsolicited advice — in all the glory of silvery-gray hair, sagging body parts, velcro tennis shoes, and all the wrinkles from years of laughter. Somewhere in between those dreams — it made me long for motherhood.

Courtesy of Mary-Beth Johnson

Trying For A Family

It’s been 1328 days since we first started dreaming of our kids. Because of my diagnosis with FA, our first step was to ask a panel of all my doctors and specialists for permission to attempt a pregnancy. If you’ve never sat in a room with 12 medical professionals around a conference table to ask for permission to make a baby with your husband, it’s as sterile and unromantic as it sounds. Once we got the green light, we were off to the races. 1328 days later, hundreds of pregnancy tests, enough tears to fill an Olympic-sized saltwater pool, thousands of dollars (and mercifully thousands more of insurance write-offs) worth of fertility treatment, about a hundred hormone-loaded shots, endless hot flashes, a bloated and bruised body from said shots, and two exhausted lovers later, and we’re still dreaming of being parents together.

Courtesy of Mary-Beth Johnson
Courtesy of Mary-Beth Johnson

Before you think of saying anything on this matter: it’s none of your business how we grow our family. This is the path we have chosen. We know we can do all of this and still not end up with a baby, but we wouldn’t be ourselves if we didn’t give it our best shot. Regardless of whether this works or not, I can tell you this: we will be parents. And the route we take to get there will have been entirely our own. And it will be the perfect way to arrive there. I cannot accurately explain what it is like to love someone in the dark places of infertility. But I can tell you mercifully, this has created a love for us that abounds in grit, in tolerance for cynical jokes, in middle of the night weeping sessions and a more solid foundation with an incredibly deep understanding of for better or worse. In the worse, Benjamin is still the best part of everything, and togetherness is our posture of strength.

On March 26th, we should have transferred our frozen embryo we have longed for in our waking and sleeping (or sleepless as is often the case with grief) moments, for 1328 days. It took a lot of hard work to get to this point — our embryo almost didn’t make it a few times in the development process. It was the only one out of our four that survived. I love this collection of cells with all my being. I hope and dream about who they could become. Will they have Ben’s peaceful personality or my unfiltered sass? Will they be good sleepers like their dad or finally put my insomnia to good use in the middle of the night? Truly, I don’t care which combination of the two of us happens to get us to parenthood and help develop this tiny person into someone who knows themselves well and can stand their ground in this wild world. I also know this tiny collection of cells could die in my womb and all these dreams will have been for more heartache. But I do know this: we have to give them the chance.

Courtesy of Mary-Beth Johnson

IVF And Isolation

On March 20th, we sat down to talk about what we should do about transferring our embryo. We were torn, and tired, and anxious. At this point, I had already been self-isolating for almost a month. I knew in February we as a nation were under-reacting to COVID-19 and even if the virus was able to be controlled, I knew I was in a few high-risk categories. We talked through impossible scenarios. What if I got ill while pregnant and we had to make life-saving decisions that would put our dreamed-for babe at risk? These are the kinds of conversations we’ve been having in our household since the virus started. We have to have advanced directives for my life at all times. We have to prepare for death in my 20s or 30s. Aside from the virus, I could get a cancer diagnosis at any point now. I’m living in the no-man’s land part of my disease, where the other shoe could drop at any moment. If we didn’t catch it in time, it would be too late.

Courtesy of Mary-Beth Johnson

Our fertility doctor called in the middle of this conversation. Can I tell you I’ve never loved a man who chocks me full of hormones and takes biopsies from my uterus more? Truly, we trust this man with our future. I asked him straight up to tell us what to do. He told me to plan to come off the hormones I was taking to prepare for transfer — the risk was just too high.

And you know what? I GET IT.

I have too many people I love working in healthcare right now. I don’t want to overload an already crumbling healthcare system. I also am decidedly not done living and don’t want to put my body in another high-risk category. There is sincere heartbreak in this decision. We have watched (and are watching) everyone around us enter parenthood with apparent ease. Nothing about our story to get there is easy, but we also want to delay or altogether skip more hard at all costs.

Courtesy of Mary-Beth Johnson

Even without the Coronavirus, our life together is always at high risk. I see about 12 specialists every three months to test for cancers, as early detection is my best bet for longevity (because of a weakened immune system traditional treatment methods like chemo and radiation are not an option for me). We are used to sitting in the anxiety of knowing there is something out there waiting to latch onto my body and rob me of years. We know what it’s like for the world to feel like lava. We know what it’s like to self-isolate during flu season because the common cold takes me 6 to 8 months to fully recover from. We know what it’s like for the world to feel like it’s paused — we just happen to have millions of others joining us now. Even among the familiarity of this season for us, there are still a few things that feel scary and new. Namely, the experience of having to convince others my life is worth saving.

Admittedly, the way this virus was communicated to the masses is only a few were susceptible. Can I tell you how much I hate the word ‘only?’ The word denotes the ‘only’ are not a big loss. That we’re dispensable. That the normal flu would probably kill us anyway, so the world isn’t any different with this new virus. That somehow the brokenness in our bodies makes us an okay collateral damage in order to resume normal life.

Dealing With Covid

But what if I told you high-risk categories (people with preexisting conditions and those 65+) make up about 59.2 million people just in the United States? What if I told you people with preexisting conditions can look just like me: young and seemingly healthy? Does it make it easier for you to realize the problem with our okay-ness with sacrificing those most susceptible to Coronavirus? Chances are, there are several ‘onlys’ in your life who are part of the 59.2 million who are decidedly not done living and whom you are decidedly not ready to live without.

Courtesy of Mary-Beth Johnson

Add to that  as we watch this virus mutate, we’re watching it develop just as violently for perfectly healthy individuals. That means you. Are you decidedly done? I hope not. One of the things FA has taught me is above all things we are human beings. That means our worth — what we bring to this world — is intrinsic just in our existence. This is good news because it means we don’t have to do ourselves into worthiness. We don’t have to be our most productive selves in a worldwide pandemic. We don’t have to be okay every day. But our lives, our being, is worthy of existing, and more importantly right now: protecting.

This means staying home. This means boldly declaring people are more important than money. This means stepping into the gaps we see in our communities and providing relief where we can. This means togetherness from isolation. This means listening to stories of people like me, part of the ‘only,’ who desperately and decidedly, are not done living. I have not fought the brokenness in my body for 28 years to succumb to a virus because someone wants a haircut. I will not forfeit my almost-four-year-old dream of motherhood because of boredom. And it doesn’t mean I’m invalidating the long-term implications of financial hardship. It does mean, however, I want to be around for the rebuilding of this world. I want to be here to step into the gaps. I want to be here to make sure we rebuild a more just world.

Courtesy of Mary-Beth Johnson

I want, desperately, to hold my children. To watch them grow up and become themselves. To live out many more beautiful and hard days with the love of my life. To learn what it is to love better in even harder and grittier places than we’ve been and hopefully, to taste the relief and joy of our dream fulfilled. I want to be part of the first geriatric community with Fanconi Anemia so younger patients don’t grow up recording videos to play at their funerals for their parents. I want to live and I want to watch you live. I want to not bury any more of my countless friends battling chronic illness and I want our family’s elders to be around to hold our babies. I am decidedly not done living, but I need your help — your continued isolation literally saves my life. Will you help me, decidedly and desperately?”

Courtesy of Mary-Beth Johnson

This story was submitted to Love What Matters by Mary-Beth Johnson from Chicago. You can follow her journey on Instagram and her website. Click here to learn more about Falconi Anemia. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more Covid_19 stories from those with chronic illnesses here:

‘I see you refusing to give up your nights out with friends, your weekend bar visits. I see you, and quite frankly, I’m fed up. My life is on hold.’: Woman with chronic illness says ‘we are vulnerable and we matter’

‘Did you think we were ‘lucky’ to stay in bed while you go to work? Reach out to us.’: Fibrodysplasia Ossificans Progressiva warrior says, ‘Check on the people you know who have to stay home for disabilities’

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