Everything you have ever wanted.

A lifesaving drug is approved for us, but it is complicated.

We have been waiting for three and a half years for a literally life-saving drug to be approved for our daughter. Two weeks ago, it was approved. Everyone called me to congratulate me, asking, “Why aren’t you excited?”

Cystic fibrosis is a genetic disease that damages the lungs and digestive system. Patients often die in early adulthood, but Trikafta is dramatically extending life expectancy.

“I have some really exciting news, but before I tell you, I have to tell you that I have really mixed feelings about this, but when I tell you this, could you not expect me to be only happy?” I begged my family members.

The term I keep coming back to over the past few weeks has been Ambivalent. Do you know what it means? Josh and I disagreed on what it meant. Over coffee one morning last week, I confessed I was feeling ambivalent about something that everyone else said I should be feeling that sort of excitement/relief/hope about. Josh thought the term meant something like you were feeling undecided about something. Akin to the sort of feeling described by the term, “meh.”

Ambivalence describes the feeling of having mixed emotions regarding a subject or someone. I am not sure about you, but I feel mixed about everything. There are so very few times in my life, if any, that I have felt generally one way about something, good or bad. Maybe it happens and it is just not interesting for my mind to linger on. I tell myself that one of the few things I didn’t feel ambivalent about was getting married to Josh.

I definitely felt mixed about having a kid. Towards buying a house. To starting a business. Towards growing old. And now about starting a drug that could save our daughter’s life.

Recently I googled #medicalmoms on a whim. I didn’t know it was a thing until I read an NY Times article that questioned the ethics of sharing your child’s information on the internet. The article stated that it was both creating awareness about rare conditions and presenting your child as a kind of freak sideshow. I was feeling alone and I imagined that knowing there were other people out there taking care of people with complex never-ending medical issues would be comforting. It sounds heartless, to want to bear witness to other people experiencing the pain that you have, but again, ambivalence. I am also curious about where the ethical lines of sharing someone else’s story lay. Will M hate me for telling her story for her? Will she, like me, rely on the dopamine hits that social media has taught me that I need to get through the day? Will we all exist in the next 20 years? Who knows?

I don’t know if what I am doing is 100% right or 100% wrong. I can tell you that my intentions with writing this are a few things:

1. Honestly, to process this event. To learn how to feel, wait, and redefine how to feel in a reality of ambivalence. That no event brings with it the promised feeling that you expected. That often times, joyous events bring sadness.

2. The idea is that one can feel things that are outside of what they are told they should feel. I should be happy about this, however, that’s now how I am feeling. I want you to feel free to feel what comes up and not what you think you should be feeling - from years of conditioning from a society that just wants you to be happy so that they in turn can feel happy. Or they don’t have to feel bad.

3. I do want to share about CF and tell you how painful it has been. I have to talk about hard things to move through them.

4. Do I want to draw attention to my struggle? Maybe. Is there something deep within me that wants to be seen and validated? Most surely. I think this is in everyone. I could be wrong.

When Margaret was 3 weeks old, we were told that her birth screening had shown that she had Cystic Fibrosis. We were doing daily feeding therapies with her at her then-pediatrician because since birth she had only been losing weight. We were also in and out of the hospital with high fevers. They thought she had meningitis. Every night I prayed to a god I promised to believe in him if he made M healthy.

We met with our CF care team the next day, my sister drove up from LA to hold my hand. My husband was giving a lecture on the east coast. My mother-in-law held the house together. I am still amazed to this day by how steadfast she is in her belief in a god that delivers pain. She says he is kind. And only gives her what she can handle. I deeply respect her, for I am angry at her god on her behalf.

When told not to do something, naturally, humans (being curious) want to do the thing. We were told not to google CF. Whatever we did, just ask them. During the visit, we were told in these words, “CF will not kill Margaret.” The internet would say otherwise. The week after her diagnosis, a breakthrough drug was approved for people with CF over the age of 18. This drug, called Trikafta promised to be the next best thing to a cure for CF. The lifespans of people with CF would double. Maybe.

In the same meeting, I also remember being told that it would probably be approved for M’s age group when she was around 2 years old. The pandemic changed this. I am not complaining, we were, after all very lucky that for the most part, we have not had to spend weeks in the hospital after M turned 1.

We tell ourselves that happiness is just one step away. That being in love cures us of the loneliness of the human condition. That losing a little bit of weight will make us feel like the beautiful we are. That making a little more money to save will bring safety. Living with uncertainty is a reality, but I delude myself with daily benchmarks just to get by.

Every day since then, I visited the CFF website, waiting for the news that M’s age group had been approved. And then one day, Missy, my mom’s next-door neighbor forwarded me a reel of someone telling me that Trikafta was approved for people 2 and up. M could try it. M could be saved.

I vomited. Walking around in a daze, I kept my hope in check. Trikafta could work for her. And then again, it might not. Because we just don’t know enough about it. How M’s body will take it? If insurance will cover it. If the side effects outweigh the benefits. The list goes on. It is not a cure.

I cried for myself. For M who would have to endure more medical tests, I called my doctor to see if there was a way that we could drug her while we went through testing. There is not. I cried with guilt that I was lucky enough to have access to this medication when so many globally would die before the age of 10 this year from a lack of access to medical interventions. I cried knowing that if this didn’t work for me, there was currently nothing else we could try.

Honestly, I want this story to keep going. I want desperately for M to live a long life. I think it is a fairly common coping skill to mentally prepare for the worst. It is part of humanity's brilliance to be able to forecast different possible outcomes that time could deliver. With that, there is no way to curate the possibilities to be within the gamut of joy. What is a good ending these days? Is it akin to a solution being found? An end to pain? A reflection of what life felt like to be lived? There are no beginnings and ends for me these days. But I want to keep going. Not for logical reasons, but programmed somewhere inside my being there is a source that feels like this life is worth it.

Thanks for letting me process this with you. We have not started the testing to see if M can take Trikafta yet. But soon. I upped my Zoloft to get through it.

Sending acceptance and love for whatever life is, Carissa

Also, May is CF awareness month. We have a fundraiser here. All funds go directly to The Cystic Fibrosis Foundation. No pressure. Times are tight right now. And so many people are in need.

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This week, I am talking to Zach Zimmerman on his essay collection titled, Is It Hot in Here (Or Am I Suffering for All Eternity for the Sins I Committed on Earth)?

Zach is a New York-based queer comic who is one of TimeOut New York Comics to watch, Vultures Comic to Follow, and who has a substack here:

We have three copies to giveaway! Comment here with a sin that you want to get off of your chest: