happy birthday to me. now, let's talk about dying.
Since being diagnosed with a lung disease that carries an average life expectancy of 50, birthdays have started to feel less like milestones and more like countdowns.
WOW, I'M NOT DEAD.
My birthday was yesterday, and like the past several birthdays, I found myself somewhat surprised to still be alive. Many friends and strangers also congratulated me for this feat. It was very nice. I felt extraordinarily fortunate and loved. But, while everyone was busy toasting to the miracle of my life, I couldn't help but fixate on its inevitable conclusion.
I've been through a lot. I'm like a cat with nine lives. Go ahead, pat me on the back—good on you, ol' chap. But how many lives do I have left after all these close calls? What if it's just one?
side note: highly recommend listening to this while reading this post, as it’s my favorite birthday song.
Growing up, I was a frail, sickly kid, constantly in and out of hospitals with mysterious illnesses and ailments like pancreatitis at eight years old, chronic bronchitis, asthma, tonsillitis, et al. Yet, I still took life for granted, spending the first half of it taunting death as a suicidal teen and reckless thrill-seeker. I was indifferent to death.
Until one February night, I woke up with the taste оf pennies оn my tongue. I remember coughing and feeling liquid fill my mouth —blood. At first, I thought іt was just a nosebleed, the dry winter air wreaking havoc оn my sinuses. But then the blood started spewing out with every cough, filling the porcelain sink with bright red splatters like a scene from a slasher flick. In that moment, death wasn't some abstract concept; іt was right there, waterboarding me from the inside.
After extensive genetic testing, endoscopes, sweat tests, and CT scans, I was diagnosed with Cystic Fibrosis, a genetic disorder you're born with that affects the lungs, pancreas, liver, kidneys, and intestine. The disease has no cure, and it carries an average lifespan of 40 -50 years. My lungs were scarred and infected, causing surrounding blood capillaries to burst. My initial prognosis was uncertain, as the disease manifested in strange, atypical ways. Most CF patients require daily therapies, and many need feeding tubes to get proper nutrition and maintain a healthy weight. Meanwhile, I'd been touring the world, playing rock shows, singing and hollering, crowd surfing, and throwing myself across stages... None of it made sense.
While I remained in denial, my husband took the news harder than I did. He was terrified, convinced he couldn't survive without me. In a very public display of support, he posted about our hospital visits, vowing to forever stay by my side. Spoiler alert: Two months later, he had an affair with a groupie in Amsterdam, and that was the end of my life as I knew it. But that's a story for another time.
The end of my marriage coinciding with my diagnosis allowed me to shove the latter aside. Divorce became a full-time distraction from the reality of chronic illness. I put all my energy into surviving each day and slowly rebuilding my life from the ground up. I moved back to LA, where age-defying tonics and procedures are shoved down everyone's throats and my friends swore by “manifesting” illness away.
Then, the COVID pandemic hit. A week later, my divorce was finalized, and within the year, two of my lifelong best friends died. So, I made a record about all of it. I had no time or energy (or health insurance) to be sick.
Until pneumonia came knocking. Blood started crawling up my throat again, and my lungs betrayed me. Doctors were at a loss, throwing around suggestions like spinal taps, ongoing intravenous antibiotics, and lobectomies. From there, death anxiety took hold. I became terrified of dying. So terrified that I even tried to believe in God, a concept I've always lumped in with the Tooth Fairy and Santa Claus. No surprise, I couldn't muster a prayer or a shred of faith, but for the first time, I envied those who could. I wanted so badly to find comfort and reassurance. It's easy to say life isn't fair, but accepting life's unfairness becomes a Herculean task when you're the one left holding the short straw. I couldn’t stop thinking about how my mother would outlive me, chain smoking her menthol cigarettes while my lungs eroded away. How's that for irony? The Stunt Cunt always wins!
I got out my mind's violin and started playing a death march, moping and spiraling into fear. I wanted to talk about this death anxiety and death itself, but most loved one’s urged me to not be morbid and warned that dwelling on the "negative" could manifest deadly results. And that made me spiral even more. If people could supposedly think their way to health, could I be thinking myself to death? Usually, I wouldn't entertain such notions, but in the face of death, I found myself clutching crystals and begging the universe for one more chance. Imagine that—holding a piece of quartz and hoping it'll magically cure an incurable disease. But desperate times call for desperate measures, so I tried it. I sat there, rubbing rocks, trying to envision a long, healthy life, but all I could think about was the baby squirrel that died trapped under my house one winter. We found its half-petrified body curled up in its tail, and it broke my heart.
Sometimes I find myself still wanting to feel how I felt
When you held me close after we found the dead animal under the house
I would spend nights hoping for earthquakes to shake you awake just so you would tell me that I was safe
Funny when they said I was dying I had suspicions you were crying only for yourself
Funny how I pretended for so long that you were somebody else
Little squirrel
Sometimes I find myself still wanting to feel how I felt
When I pretended to believe your lies
Little squirrel
Little squirrel
Sickness brings out the very young, insecure part of myself. It feels like another defect that makes me imperfect and not good enough. Cystic Fibrosis is a genetic disease, yet nobody in my family has it. I'm alone with it. Both parents must be carriers to inherit CF, and it's just luck of the draw that both of my parents gifted this to me without being cursed with it themselves. At times, I feel more embarrassed than unlucky. To be honest, I don't like to draw attention to the sickness because it makes me feel genetically insufficient.
It's pretty simple to onlookers and clinicians alike: Confronting mortality is hard. And for a control freak like me, it's even harder. We all know we're going to die. All of us are dying all the time, a little more with every passing day. But when you get sick, it becomes more real, too real. It feels close. With a diagnosis comes an ever-present foreboding that can't be shaken off. It's there, inching closer. It's a constant exercise to overcome my fear of losing control. I seek to do this by reminding myself that there is that which we can control and that which we can't. Figuring out the difference is the hard part because we all know we're dying. Some of us just know it more.
Western culture has an almost pathological fear of death. We sanitize it, hide it away in hospitals and nursing homes, and then act shocked when it comes knocking. We treat it as a taboo subject. It's impolite to bring it up because it's morbid and anxiety-inducing. The United States, and probably most Western societies, are death-denying/defying cultures. Living in Hollywood for two decades has only strengthened my fear of death; if aging is spurned, death is the ultimate defeat.
In contrast, other cultures embrace death. There's Mexico's Día de los Muertos, where death is not just acknowledged but celebrated. Eastern cultures see death as a mere transition. Rather than trying to outsmart death, they accept it as a fundamental part of life. Hindus view death as just another stop on the endless carousel of reincarnation.
For me, a good first step to accepting death is to normalize it. I'm trying to find peace with the idea of death while also trying to find peace in living. Even though I suspect the anger, cynicism, and dark humor have helped keep me alive —my way of refusing to go quietly into that good night, I don't want to die an angry asshole.
And on that note, I'll take a deep breath (while my lungs still can) and blow out the candles on my birthday cake. Here's to another year closer to the grave—let's make the most of it.
c u next tuesday.
XX CARRÉ
PS: pictures taken by Darian Zahedi
PPS: The chat I started in place of a post last week blew the fuck up with 200 replies! Thanks to everyone who engaged.
PPS: Please help spread historical hysteria by liking, commenting, sharing, and subscribing.
While I’m completely ignorant to what you’ve gone through with/since your diagnosis, I offer a well-intended, possibly naive but urgent suggestion: Please research and/or reach out to the Cleveland Clinic in Cleveland, Ohio. From my understanding, they are leading in innovative research and treatment. Much love. Stay rad… and healthy!
https://my.clevelandclinic.org/departments/respiratory/depts/adult-cystic-fibrosis
Happy Birthday Carré I am glad you survived all of that and we are so lucky that you are still here. 🎈❤️🎈
Some people said to me that the controlfreak in me (I even gave him a name many years ago some old friends of mine still use) is because of being a virgo. I realise you are also a virgo but until now I don't know much about astrology I have to admit and never really believed in it but I know quite some people who do. I often answered that it's nice to know that being born during a certain time of the year makes me a controlfreak but that does not cure the problems that come with it haha.
That was once again an extremely interesting and moving piece of writing. Thank you for sharing that with us!
All your posts are just really speaking to my heart. Not because I have lived the exact same life but because you can write about really hard topics so well and it's never preachy or something like that. It is such a great mix of emotion and rationality, facts and feelings, humor and darkness. It's so well written, you are so very talented and at the same time you are such an inspiring personality.
I really hope you can have time, of course many of us hope that since we all never know when we have to die, but knowing there is a disease like CF in your body is a different story. The son of an old friend of mine was born with CF. I remember some details about it because it was understandably dominating everything in her life at the time. Like you, he also had an atypical version of it and when he was around 10 years old they told her if he takes his medication and always uses his inhalers he might make it to 70 because they were very optimistic. Also optimistic because they seemed to do a lot of research on the topic and were thinking that the treatment would be better throughout his lifetime (He was born 2009). Nevertheless I realised how hard it must be to not know if you can at least HOPE for the lifespan of 70-80 that is "normal" in western countries. He grows up with that knowledge but being hit by it suddenly like it happened to you does not give you the opportunity to slowly process that. I have such massive respect for how you pulled yourself up again after all of that.
I agree on everything you said about death. I feel the same about how it's treated in our culture. I recently talked with a friend about it when I realised that most people my age I know have never seen a dead body. I saw the first dead body when I was 12 when my grandpa suddenly died and I watched my grandma dying at home when I was 15 so for me it came quite early that I had to think about it but I imagine that in other cultures or some 100 years into the past it was just normal that kids saw people die and it was just happening a lot more at home.
They both lived with us and helped raising us. It changed me forever and that is not even meant to be a dramatic expression it is the simple truth in that case. I was not the same anymore afterwards. When my grandpa died it was all very sudden, he had a happy death, whenever I saw how they celebrate death in Mexico I had to think about him. He would have loved that and it would have fitted for his goodbye so well. But my grandmother had a long, slow and painful death. She wanted it that way for reasons only she knows and since she was blessed (or cursed?) with a clear mind till her last days she decided what she wanted. I am german so when it comes to that generation it is maybe not an exaggeration to say many of them wrestled a lot of demons.
But what I learned at that time was that life ends. That you go, everything you were, everything you owned nobody can use, goes with you. I was absolutely mindblown and shocked and sad in a way I had never been sad before. I felt all of it aged me a lot. If I ever was careless, that was over. Death is massive. I wonder how we as a society are even able to put something so extreme and elemental into a corner. It's mad. No wonder we cannot handle it anymore. I remember the doctor of my grandma, he said "How many days do you want to keep her?" And my mother quickly decided we will all say goodbye to her and send prayers and stay in the room for a while but that we do not keep her for more days. Simply because she had small children (I am the oldest) and she had no idea what would happen. Since her father and my great grandpa died suddenly they were taken immediately because of autopsy. But for my grandma if was 100% sure it was a natural death. So we could keep her and her doctor who was an older guy just assumed it was normal, but it is far from normal in our generation and culture these days. People think it's creepy.
It did not feel creepy to me by the way. Just absolutely shocking that they were gone and would not come back and I could not see them ever again. It just hit me seeing her dead body lying there. And nobody wanted to talk about it. My mum probably would have, but she lost everyone that was close to her within only a few years so she had no capacity I think, she was just so sad and felt very alone since she had no elders anymore and was only 40. But that for me was one of the hardest parts, what you said in your text too, that it is perceived as impolite to talk about death and I was desperate to talk about everything that was in my head. Since that did not happen I think I developed a massive fear of loss. Because at the time I was never really able to find a good way to handle what happend so my teenage mind was scared that everyone can die anytime and it did not really get better with more people dying around me, younger people, suicide...all of that. It made me feel that nothing is in control (which is mostly true) and the worst can happen anytime (also mostly true I guess). It was hard to accept that without losing my mind and push back into my mind that on the other hand the best can happen too anytime and that things can be in control sometimes.
Also while I write this I wonder if I should delete it again because I already feel it maybe is too much "death talk" and I do not want to make people feel uncomfortable. Fits with the topic.
Aaaanyway...
Cheers to surviving and to many more years to come hopefully and it's wonderful that you had a lovely day and your loved ones showed you the love you deserve 😻