How I Healed After the Loss of My CF Mentor

Losing my best friend and cystic fibrosis mentor was crushing. I had to learn to let myself grieve -- and do it offline -- to be able to cope with this loss.

| 5 min read
Ashley Wilson
Ashley Wilson
Ashley-Wilson-Paddles-CF-Mentor-Featured-Rectangle

Receiving the news that a friend with cystic fibrosis has passed, is one of the most painful experiences that one can go through. In December 2018, my mentor, big cyster, and my first friend with CF, passed away. As soon as I received the phone call, my world and my heart completely shattered.

Grief is hard to process and, as I look back upon that time, I now realize I didn't know how to process it.

Losing family members is one thing, but when you lose someone who shares the same disease as you, it affects a person in a completely different way.

I thought that I could rush the healing process like ripping off a Band-Aid. I did … for a short period of time, but it wasn't a process of healing. It was more of pushing through the numbness of grief to finish my classes until I could fly home to be with family.

I thought that because my mentor taught me to be tough, I had to hold it all together and continue to be positive for family, friends, and others in the CF community. However, I had forgotten important advice she once shared with me: “It is OK to feel scared and to cry. Sometimes we tell ourselves that the brave thing to do is to hold it all in, but really it takes some guts to say how you really feel.”

I felt angry, sad, and heartbroken. Everything reminded me of her -- who I was as a person, places where we had hung out, places we had surfed, and the list goes on. She wasn't a CF friend I met through social media; she only lived 20 minutes from me. See, I never would be the person I am today without my big cyster. I also wouldn't be so public in sharing my cystic fibrosis story and building a social media presence without her guidance. She is the one who inspired me to be an advocate for -- not only myself -- but for others with CF. When we met to hang out, we would follow CF protocol. We ate lunch outside and sat 6 feet apart at a large table. We would surf and stay more than 6 feet apart. We would wear masks to ensure that our health wasn't being compromised.

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In February 2019, we celebrated her life and honored her by organizing a paddle out to occur in May. A paddle out is how the surfing community honors a surfer who has passed away. Everyone paddles out on their boards with flowers and joins hands to form a floating circle. This is such a special and intimate moment to share with others. Our circle had formed into a heart, which really made it even more special.

It wasn't until June that I began to take time for myself to grieve. I let myself feel the emotions and the pain.

 My mentor was such a huge part of my life that -- when losing her -- I lost a piece of me.

During my time of healing, I had to basically strip everything away to find myself again. I took a step back from social media and only posted occasionally. I did not pressure myself into feeling that I had to post something because I had followers or to keep my social media presence.

My family and friends were very supportive of me during this time. They were there if I ever needed to talk or just cry. They also gave me the room to explore and try new things. I got a job, began surfing more, started volunteering at a place that is special to me, and experienced traveling to a different country. Everyone has their own way of grieving. For me, partaking in all these activities was healthier, instead of going on social media to share every single detail of how I was feeling. I didn't do all these things to push through my emotions; I did them to feel closer to my big cyster because I always told her that I would do these things.

It wasn't until January 2020 that I felt ready to share my CF story again and to be fully present with my social media presence. I made sure that when returning to social media, I was ready to talk about cystic fibrosis and to continue being an advocate for those with CF. By continuing to challenge myself and follow my dreams, I know I am honoring my dear friend and making her proud. I am still partaking in all the activities that I explored while healing. I truly do feel closer to my mentor when experiencing all my new hobbies.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Ashley Wilson

Ashley was diagnosed with cystic fibrosis at birth. She was later diagnosed with cystic fibrosis-related diabetes in 2011 and diagnosed with cystic fibrosis liver disease in 2015. She is currently pursuing a bachelor's degree in cinematic arts and technology and later hopes to share others' stories through documentaries. Outside of school, Ashley enjoys surfing, adventures with friends, and working as a YouTube creator.  She also is a producer and contributor to various podcasts. She has a personal channel, Ashley's Roses, and contributes to Staying Salty. Ashley is also busy taking advantage of every opportunity that is provided and living life to the fullest.

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