I’m not the only one with a story like this but it’s not my place to share their stories. This story is mine. In the beginning it wasn’t just ‘Five Feet Apart’, but Five Hundred Miles Apart, which eventually turned into Zero Feet Apart, hands interlocked and loving each other to the end.

My name is Kelsey Smith, and I am 35 years old. I have a passion for photography. The automotive industry has always been a fascination of mine. I am a gamer. I also enjoy streaming on Twitch.TV promoting Cystic Fibrosis. This is because I myself have Cystic Fibrosis, and it has been a battle all my life.

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Heather’s Xanga profile picture

Fourteen years ago this March, I was admitted to the hospital in Columbia, MO for an exacerbation for my Cystic Fibrosis. I spent a lot of time blogging my struggles on Xanga.com. One day, I was exploring a cystic fibrosis group on the site, and she caught my eye. Her name was Heather and she was 500 miles away in Indiana. She openly shared her struggles with CF, which was obviously relatable. She had the sweetest smile but with eyes so fierce and yet filled with hope as the sunlight lit her face in her profile picture.

I reached out just to say hi, and surprisingly she responded. Before long, a few days of AOL instant messaging here and there became hours of conversation. Then that became phone calls, often lasting until 4 am, all while I was still in the hospital.

Obviously I wanted to see her, to meet her in person. At first Heather was hesitant, as she had MRSA (Methicillin-resistant Staphylococcus aureus) and didn’t want to put me at risk. Clearly my heart didn’t care about that though, so I continued to try to charm her into a visit. Near the end of March, we made a deal: as soon as I was discharged I would make the trip to see Heather. The day of my discharge arrived, but unfortunately Heather was now the one admitted to the hospital. That didn’t discourage us, so I waited until she made it home two weeks later. I took a few days off from my part time job at a local dry cleaner, and headed to Indiana in the middle of April, exactly one month after first talking to her.

The first visit April 2005

Later that month, Heather felt it was her turn to visit me. Before she could make the trip, her port-a-cath ruptured while at home. Despite her family being within an hour away, they refused to be there for her. I was heartbroken at being so far away and unable to help.

Luckily I had family who understood what Heather meant to me. I was lying on my bed crying, when my dad came in and tossed down enough cash for me to afford the trip. He said simply, “Go get her.” I left at 9 pm and made it to Heather around 4:30 am. I took her to the hospital the next day, and then stayed with her while she healed, so I could take care of her. I lost my job because of that trip, but it was well worth it.

In the middle of May 2005, Heather finally made it to Missouri to see me. I showed her around town for a day, cherishing every moment with her. When it came time for her to pack up and leave, it hit me. I couldn’t let her go again. I quickly ran to tell my dad, who didn’t hesitate at the thought and gave me full approval. I packed what I needed and left with her. From that moment we were together. In two short months, I had taken a break from school, risked my health, and moved 500 miles for this girl.

It wasn’t even two weeks after that, as we were lying in bed together talking about our health and the future, when she looked at me seriously and told me, “These lungs have probably 3 years left.” I wasn’t sure how to take this. At some point I had all but forgotten about it. She initially didn’t want a transplant, which would likely mean trading one illness for another, requiring additional medications, and carrying the risk of infection and/or rejection. It could mean a lot of suffering, just to hopefully buy a few more years. It didn’t seem worth it to her.

I was the rebel initially, in terms of my health. I never did my breathing treatments, rarely took my meds, and for the most part skipped doctor appointments. Heather, on the other hand, was strict as could be. She introduced me to the Hillrom Vest for breathing treatments and taught me how to be much more compliant than I ever thought possible. I owe her a lot in that sense because it kept me healthier for longer.

Heather, our Akita Nina, and myself

These stories of love between two sharing a disease never come without struggle, pain, and heartache. We weathered through the dark times, when only we could understand what each of us was going through. That is a large part of what made it all worth it: the connection, understanding, and love.

Heather and I both finished school and earned our degrees: Heather in Early Childhood Education, and myself in Automotive Management. In 2007, we met a woman named Emily, who had just given birth to her daughter Lily and was getting ready to go back to work. At just 6 weeks old Lily was already an adorable ray of sunshine. We became friends, spending time with Lily and Emily for 5 months until they moved away.

Baby Lily

Sometime in 2008, Heather had a change of heart regarding a lung transplant. By that point she was on oxygen 24/7 and IV’s almost constantly, and she felt that it was time as I was close to finishing my degree. After my graduation in May 2008, we started the transplant process for her. We moved closer to Indianapolis to be closer to the hospital, where I also planned to further pursue an automotive specialty.

One of Heathers hospital stays

However, the move itself completely wore out Heather’s body. Three days later she ended up in the hospital, struggling to breathe even with oxygen. The doctors felt it best to put her on a ventilator in a medically induced coma. I was still at the apartment when this choice was made by her and her mother, with only a phone call from her mother to inform me. I was never given the opportunity to tell her I loved her, or comfort her, or say goodbye.

My mind rejected the reality at first, hoping and — despite my beliefs — praying she would be ok, sitting by her side every day until I was mentally and physically exhausted. But after two weeks, the doctors confirmed the worst: her lungs would not be able to handle coming back off the ventilator. 
On June 5th, 2008, just a month shy of her 23rd birthday, I held her hand as they pulled the ventilator tube, as she stopped breathing, and as they pronounced her dead. Watching someone you love so deeply pass away destroys more than you realize you have. To have that connection and understanding, the bond of cystic fibrosis, destroys yourself as a whole as well. The precursor to your own fate amplifies that terror. It took several months for me to begin to even feel human again, let alone function.

***

It’s crazy how life works though. Remember baby Lily? Emily and I stayed in touch. She supported me after Heather passed away, and through life’s many other hurdles. She became my best friend. She understood me just as well as Heather did, and through thick and thin, we ended up together.

Vacation 2016

It’s wonderful feeling another connection grow equally strong, although in different ways. It’s bittersweet being able to watch Lily continue to grow 12 years later, and to continue my “early childhood education” parenting Lily (Oboe) and Corbin (Cello). To have created a life and a family through the love initially shared with all of us by Heather.

Oboe, myself, and Cello

Recently my health has started to have its bumps and bruises. Emily has been there by my side and stays equally strong. I know this ahead of time though: I will seek transplant. We are prepared to fight.

I love you Heather Nicole. I love you Emily.