What is “life-changing?”

Last year, after Allt för Sverige, hands-down the most popular question I got was whether the experience was life-changing. I didn’t know how to answer.

It was life-enriching, certainly. And life-affirming in a truly great way. But without being able to see the future and the greater “story arc” of my life, I just felt like it was too soon to make a proclamation that it had truly changed my life. When the casting director Sofia Eng told me that they chose me for the show and that it would “change my life,” I was skeptical.  And even a little bit hesitant… because I was already content with my life and who I am.

Growing up with the visceral knowledge that your days on this earth may be more numbered than those around you makes you live very intentionally.  I already knew that I was living life to the fullest doing things I love, growing relationships with people I care for, learning and exploring every day that I’m able.

Don’t get me wrong, I believe that Allt för Sverige can be a life-changing experience for those who need it to be. And granted, I wouldn’t have returned to Sweden this summer, met my family, and had my first experience living overseas for any length of time. I wouldn’t have sung in some of Sweden’s beautiful cathedrals. And I certainly wouldn’t have summited Mt. Kebnekaise.  But even considering all of the experiences I’ve had in the last year, I don’t feel like a different person, or like it was a pivotal moment that was going to spin my life in a different direction.

I can finally say why I was so hesitant to definitively say, “Yes, this was life-changing…”

…Because I was holding on to hope for something even bigger.

Let’s go back to the original question… “What is life changing?”

For me, it would be something substantive and concrete that would change the in-and-out of everyday life.  On a very tangible level, it would mean living life free of the myriad treatments and commitments I have to make everyday just to keep my lungs healthy. Something that would enable me to do the things I want to do without having to worry about rushing home in time for a treatment. Something that could target the actual root cause of my chronic disease and open up a whole new world of opportunities.

To spend the time I want to spend with other people and laugh as hard as I want without falling into a coughing fit.

Having the time and energy to devote toward a career I can engross myself in.

Being able to someday use the retirement account I started at age 23 for… retirement.

Knowing I could devote a month or two of my life to performing in an opera without the inevitable related decline in my lung function. (Singing itself improves my lung function but the energy involved in rehearsing and performing drags it back down again.)

All these things are what give life its richness… and yet in order to keep living that life I have to devote hours of every day to staying compliant with my meds, diet, and lung physiotherapy.

I was in Stockholm the day after we finished filming of Allt för Sverige when I read breaking news about something that could potentially be that life-changing thing.  For the first time, there had been a successful trial of a drug that targets the root cause of my CF. Something that didn’t just treat the symptoms or fight off infection, but that actually could give us a long-term weapon in combating the cause of my CF on a cellular level.  And it was going to be reviewed by the FDA for approval in the US.

Truth be told – I wasn’t healthy by the end of Allt för Sverige.  I had pushed myself too hard for too long, and my lungs were struggling to keep up.  But I ran down the hotel hallway and knocked on John’s door in happy tears, so excited to share the news. We toasted to my “consolation prize” together that night before I flew home.  John had his family reunion while I was starting IV antibiotics to fight back my chronic lung infection.

And that’s exactly why I couldn’t say Allt för Sverige was life-changing… because the show and everything that went with it were living in the shadow of the hope and expectation that a medical breakthrough could be coming just around the corner. I’ve walked this Earth for 35 years – against all odds – and seen many friends die along the way because they couldn’t get the lung transplants they needed, or the life-saving lungs they received ultimately were rejected and destroyed them. And my biggest goal in life has been to keep my own lungs healthy enough so that transplantation would never be necessary…holding on until the day when science caught up with us and could give us a real weapon against the cause of our disease.

One year later, on July 2, 2015, I was once again in Stockholm when I read the news that the FDA approved this drug and it was coming to market. Time will tell how well it really works, and initial reports are that this won’t be a big difference-maker in how I feel everyday.  But this is the first drug of it’s kind and there are more in the works that are supposed to work even better.  It’s still a long road, but it’s a start.  And I have faced bigger obstacles than this.

Today… It’s here. It’s real. I have it in my hands for the first time, and I’m holding my thumbs that this is something I can truly call “life-changing” without reservation.

Orkambi Day

Skål… to 100 years.

 

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