Over the past few days of sadness and loss I have stopped and started this post several times. There have been a bunch of different ways I have tried to describe why this particular loss has really thrown us – the CF community, but also our home. It is my sincerest belief that every single life on this planet is powerful. Whether a person lives their whole life ill and in a hospital bed (maybe even for just a few short days) or a person finds a way to save the world through service and hard work – I truly in my heart believe the planet needs both and both of these lives have the power to change everything. Thus any loss of life is jarring, sad, and makes us all pause. That is just life… but there are just some losses that feel impossible to accept.
This last year Lea has come into our world at a variety of different times. We both first heard her story when she shared it at MiniCon Transplant this August and then we proceeded to follow her journey a little more closely as someone who has elected to make CF not just part of who she is – but part of what she does. On social media she has become a big voice for CFers, in terms of CF management she is an advocate, and in support of the CF Foundation she is one of the ambassadors. Lea has taken this “curse” and forced it into an opportunity to live well, love hard and make a difference. Her story of lung bleeds and the significant weight it put on her life was scary and sad – but it was never told without the reminder that she had pushed through and became a nurse, undergone complicated surgery electively and come out stronger. Like so many CFers, the tough and the ugly was never shared without the triumph and the beauty. And to then choose to relive the story over and over again in hopes of helping others was the definition of a hero. Cause here is the God’s honest truth: no one ever begrudges a CFer for wanting to leave the past in the past. 1: its hard to process and it can make staying positive for your current health hard and 2: no one wants to continue to dwell on the fact that the battle is likely not over. But Lea really wore it all as a badge of courage and created a space for others to do the same. Lea manufactured hope and gave it out for free.
Fast foreword to the week of Thanksgiving. Its the Wednesday we went to Hopkins and as we made the familiar trudged down the sky walk Danny and I reminisced about the holiday season we lived in this place when he got new lungs. The part of the story in the hospital walls specifically stretched from Thanksgiving until New Years, so this time of year always has us reliving it somewhere in the back of our minds. So how strange to be doing so in the actual place. If you follow us here or on social media then you may be confused by this… we go to Hopkins all the time?? All I can tell you is this visit in the here and now felt different. As we turned the corner I saw Lea with a physical therapist who has also worked with Danny. This moment struck me with a variety of very poignant thoughts. Funny how we in CF have our own little community: you all may have the same mailman, well in Hopkins CF world we have the same physical therapist. Next I noticed that the therapists main job was to pull the oxygen tank, as Lea did her power walking and simultaneously was chatting a mile a minute on the phone. I laughed – for some people PT might be a time to really focus or take the therapists guidance – but not CFers…. this is old hat to them and they don’t need any guidance…. they are all same: this is regular life so get out the way and let them live it. Then there were things that made me smile about how Lea looked. She wore her Salty Cyster bright pink shirt and I love how she owned everything about her life in the hospital and literally called it out on her shirt. She was laughing and and smiling – just like any 20-something you would see gabbing on a phone – I thought how she clearly didn’t shut down participating in her life while in these walls. That is another thing no one would blame her for doing, but she just choose to connect into her life in a different way. Finally she was so vibrant – despite the oxygen I remember thinking so clearly, she is so strong, so healthy – whatever CF has for her she is lucky cause she will fight through. Will she even need a transplant ever? How far we have come that she may never get there….. but even if she does face the demons of this disease, she is way too much of a positive fighter, I bet she will excel. And I laughed at how Danny’s life may be that of an “old CFer” and the frustrations he knows may never come to be for them…. as much as I envied it, I was also happy for her. Plus – look how far we have come with Dan! How sad can we be that he had a longer road when it has turned out so well?
Those final thoughts and words have echoed in my brain over and over again since we heard from our doctor later that day “I would not be doing my professional duty if I let you walk out those doors Danny, you are changing too quickly, we have to admit you.” How stupid…. how cocky… how dumb can I be? Danny and I laughed – this isn’t our first rodeo and how naive to think it would all be ok. How STUPID we were to not even bring an overnight bag “just in case.” This is what CF has for us…. this is what it does… plans for a hockey tournament? Holiday fun? A new career starting for Danny January 8….. oh you simple human creatures – that isn’t how this works. CF makes sure to do its best to ruin it all.
Danny was strong and said OK to his doc. And when I asked how he felt as we started to fall down the rabbit hole of this is our life and he said “I don’t want to think about it” . I shut my mouth….. but my brain would have these thoughts swimming around for days. A few strange occurrences happened that helped me to mute these darn voices for a good part of this hospitalization – but as Danny remains sicker (bed last night at 11 and it is almost noon and still I have not see him up) it has been hard to keep them away. That Sunday night I saw on Lea’s IG account that she had been in “hotel Hopkins” (as she called it) for awhile, but was now allowed to go home – even if she wasn’t necessarily better. She went on to share openly how this was one of the first times she has really struggled to stay positive and as I read I felt comforted…. we weren’t the only ones struggling. On that hallway in fact- and it had been a messy mindset for a lot of us CFers and families. And then I thought how may be I was wrong….maybe she would start to face the longer road Danny had, even being younger – and instead of hope, my heart hurt a bit…. CF attacks them all, even the really strong ones.
It’s strange how parts of this life stay with you. On that Wednesday Danny had said to his Doc – “I will go in but on a holiday, am I just going to sit and things are not going to get done?” And so very quickly the Doc said “oh no, I will definitely be in.” As I was leaving the hospital I ran into a family we know through CF and COTA and heard of the horrendous time they are going through…. I thought of Lea…. I thought of Danny…. and whoever else was lurking in those halls under CF that I am sure needed our team. Our medical family were in struggling and stuck in the hospital on this holiday too.
When I learned of Lea’s passing Thursday shock was the biggest emotion. Both Danny and I were in shock. The CF community has had tough losses this year but a few of them had been transplant complications or not getting lungs. Those are heartbreaking and play on our guilt and emotions in ways that I don’t even really like to delve into…. but there was explanation, even if that doesn’t mend the heart. Lea’s no one saw coming from the outside world. Of course, we aren’t on her medical team or her close family – but someone who was just traveling to Europe in September shouldn’t be dead – that is how we all felt. Then I wondered if it was that we had just had so much interaction with her… I had found comfort in her messages “I am home but its a long road” or “its hard to stay positive” – those made me feel better. Or was it simply her videos from the hospital, her doctors, her positive moments like the Hopkins Christmas tree are all of ours. Those pieces are right out of Danny’s story…… is that what is making this time hard to sleep or be happy or walk forward (even if we aren’t ready to move forward) seem impossible?
This morning it became crystal clear as I looked through the new Lea tributes that had just gone live in the last 24 hours. Lea’s passing is the exact definition of the evils of Cystic Fibrosis. Lea looked vibrant and live, she had been working on her health, she had been living life: nursing career, just falling in love, enjoying recent travel – she had put the brakes on a FULL LIFE for a medical bump. But it was just a BUMP. It wasn’t supposed to end this way. All CFers have the bumps…. but they also have choices for when the bumps don’t go well: more hospital time, consider transplant. It doesn’t just end. That isn’t how this works anymore. It is ALWAYS the hardest part of CF life when yesterday they were up and walking around and living life and the next day they are in the ER or have to be a admitted. We all know that life – but it never gets easier. But the worst is supposed to be hospitalization or maybe at absolute worst a medical induced coma when we need to borrow time….. but death. It isn’t supposed to be the end. It is just the bump. To get through the bumps that is what we all – the patients, their loved ones – tell each other….. its just a bump. Sweet Lea experienced our worst nightmare….. and to the vibrant, positive, sassy one? No – no it isn’t supposed to be like that for her. That is what the post this morning said – this is CF…. fine one day and not the next. And to the person who made it fine for so many of us…. Lea, we are so, so sorry.
Last week on Friday night Danny helped lace up my skates – as I whined and said how I didn’t think I should skate. I was going to “fall and break my a** in front of all these kids and embarrass us both” I keep pleading over and over. He gave me those hazel eyes and dimples and I swear in that second it was the summer of 2005 and this boy was stealing my heart all over again. “FINE…. lace up the dumb skates, ugggg I will go out there.” Ya’ll it was a blast. I did fine…. but best of all, there was an excuse for him to hold my hand the whole time and then he bragged about how well I did. We laughed and enjoyed and it was the brightest moment we have had in so long between him feeling rotten and all our plans going up in smoke because of health. The night only got better from there as we went for drinks and then to a whole other restaurant for dinner…. it was like we were 21 again! Fast forward a few days later….. Danny’s numbers are getting worse, he goes to work and hockey but that is it. Our life has gotten very quiet and the questions of “do we push for him to live or save his energy?” “Do we call Hopkins and risk being admitted?” “Is our year and half of normal life over?” We are like deers in the headlights – frozen with what to do. Danny often sleeps on our couch in the basement and every night at some point in the middle of it, I go down to watch for him breathing. So often I tell myself this is stupid – I go to work and sleep and live my life away from him for hours…. and I can’t watch him breath – and he lives. But recently I have to go down multiple times… and then you go through the emotion of being mad it has gotten complicated with our plans, yet shouldn’t I just be happy that every time I watch him breath…. he does?
Lea, it’s truly what I said – you manufactured hope for the CF community. And I know, as many have posted, you would not want us to be sad, you would not want us to worry – you would want us to live and enjoy …. but the fact that so many of us can’t accept this answer is a tribute. Your light touched on so many lives. Also, so much of my sadness has also been for our medical team. I can’t imagine their hurt…. because you pressed them and drove them crazy …. and I am guessing reminded them why they love those with CF: they are the most spirited and spunky patients there are. And Lea, they loved you – so being sad for them is ok – its further proof you were loved. Thank you for sharing your life with so many of us….. thank you giving so many of us a part of your heart. We all are taking you with us forward and we will do our best to love each other and life the way you chose to – thank you.
Rest in peace, Lea.