Learning How to Live

I have been trying to figure out how to write this blog ever since Trikafta was approved by the FDA, really ever since I started feeling better on the drug, and have admittedly struggled to do so. But when I opened up my email this morning, I saw a blog inquiry from a reader asking about this very topic… so here I am writing about it.

Now that we’ve been given our future, how are we supposed to live?

It’s a question that we’ll all have to answer on our own over the coming months. Here’s mine…

Living from day to day, or month to month, as so many of us have, takes both an emotional and physical toll on all of us – especially us adults who have had to live like that for so many years. For decades we’ve chased this goal. We’re at the point where we can modify our condition to the point where CF is largely livable at the very most, and the very least, this drug will hopefully buy us enough time until we get to the next breakthrough.

Chasing the “cure” has cost us, more than anything else, time.

We have spent thousands of hours doing treatments, volunteering at fundraisers, negotiating with insurance providers, going to clinic visits, enduring medical trauma, anticipating a medication delivery, clearing our lungs, coughing out mucus, blood and phlegm, and waiting for a miracle drug.

Some of us have sacrificed careers, others have sacrificed family building and some haven’t had the opportunity to do any of the above.

All the while our health has slowly deteriorated.

All the while the world has seemingly flown by the hospital window.

All the while we have lost friends and family members to cystic fibrosis.

Now we’re here. We have this thing that will give us some of our lives back and unlock the future for even more. What’s next?

We are faced with the challenge of learning how to live.

A few months after I started on the triple combo (yes I still prefer to call it that), I realized that I started checking off the box that said “great” when survey questions asked, “how would you rate your health today?” That’s when I realized I had achieved a new normal in my life. I was no longer living day to day constantly consumed with my CF. It was also around then that I looked forward.

I was terrified.

Looking forward was something that I had never done. How could I? I had been so consumed with my worsening CF symptoms between my trips to the local interventional radiology unit every couple of months. Yes, I was working and saving for retirement and all that fun stuff, but I never really contemplated what it would be like to dig into those retirement savings one day.

I had one goal in mind when I graduated from college…. Live on my own. Even after my health started to improve it took almost 16 months to move out. Why?

I was confronted with a future that I had no idea how to handle. It was like it suddenly appeared and now it’s here to stay. It took a long time to wrap my head around this second chance at life, and now that people with CF all over the US are getting access to Trikafta, I encourage you to think productively about your future… whatever that may look like.

We’re trained from the very beginning how to survive and how to troubleshoot some of the very worst medical problems that could be thrown at human beings, but none of us are taught how to live after critical illness. This is an amazing opportunity that we’ve all been given, but how do we do it?

At first it may seem scary, and for a lot of folks it will feel unnatural. I know for me it certainly did.

As Lea got sicker and sicker last winter, she used to talk to me more and more about the triple combo. She knew I was on the drug. She wanted reassurance that the drug continued to work and didn’t lose its efficacy as all the antibiotics had for her. Her talking about the triple combo gave her hope.

Then a few days before she passed that all changed. She told me that she couldn’t believe she had made it so close and wasn’t going to get there.

She had kept herself alive for 28 years, all with the hope that she would get her chance at a miracle drug, and she knew in her final days that it wasn’t going to happen. It crushed me.

For days and days after Lea was gone, I hated looking at the yellow pill box. The box that unlocked my future, but was created on the backs of so many people with CF who have come and gone. It made me angry.

It made me angry that Lea never got her chance.

Through the haze of it all, I looked back on our friendship together. In Lea’s final days, she taught me that it is okay to look forward. The conversations that we had together at the end of her life were some of the most powerful that I have ever been a part of, and I think that’s how I found the courage to look forward, and to learn how to live again. I don’t know how to describe it, but it felt like a voice inside me gave me that courage.

I have taken on this second chance with determination that I hope Lea would be proud of. Each time I take my two pills in the morning, I think about her, and thank her for giving me the willingness to learn how to live… and make the most of the rest of my time. Lea taught me how to live again.