Barbara Abernathy has always felt at home in the ocean, but when she undergoes a bone marrow transplant, her doctor tells her she can't go into the water for a year.

Barbara Abernathy, PhD, LMHC, is the President and CEO of the Pediatric Oncology Support Team, Inc. (POST), a nonprofit helping children and their families cope with the devastating effects of cancer. Being a cancer survivor herself, she brings a personal touch to the children and families battling childhood cancer. She has 30 years’ experience in nonprofits, 21 of those years at POST. She has a PhD in Counselor Education and Leadership from Florida Atlantic University (FAU), Master of Education in Counseling from the University of South Alabama, A Master of Science in Biology from FAU, and a Bachelor of Education in Human Development and Social Policy from Northwestern University. She is adjunct faculty at the University of Miami Miller School of Medicine and FAU. Other professional experience includes pediatric AIDS, bereavement, family counseling, parent education, and treatment of severely abused children. Barbara has presented as an invited speaker at many national and international professional conferences and numerous community and school settings. Her interview with Heal magazine was published in the Spring 2018 issue under the title: “Surviving Survivorship.” She has authored three scholarly peer-reviewed articles. She was awarded the Giraffe Award for women “who stick their neck out for others” by the Women’s Chamber of Commerce of Palm Beach County. She also won the 2017 Heroes in Medicine Award presented by the Palm Beach Medical Society and the 2018 MPN Heroes award given by the American Society of Hematology in December.

This story originally aired on June 7, 2019 in an episode titled “Underwater.”

Story Transcript

Five years ago I was standing on the jetty in Florida looking out at the Atlantic Ocean and just drinking in its beauty because that was the moment that I had to say goodbye to the ocean to go have a bone marrow transplant.  The transplant doctor had told me that, for a year, I wouldn’t be able to get into the water because of all the treatment and it makes you immune-compromised.  It would be risky to get in the water with a compromised immune system and be susceptible to bacteria and just don’t count on it. 

I’m a scuba instructor.  I love the water.  I've grown up around the water.  The water is just such an essential part of me, of who I am.  It’s my happy place.  It’s my joyful place.  We all have that safe, joyful place that we go to and it just represents who we are. 

So that day I got in the water and I just was like, “Okay, let me just hold on to every memory of how this feels, the water against my skin holding me up, just the warmth of the sun,” just that moment drinking it in. 

And as I turned to leave, I said out loud, “All right.  This is goodbye for now but I’m going to be back.  Don’t go anywhere.  Give me a year.”  And I went to start my bone marrow transplant journey. 

But my story starts back in 1996 when I was diagnosed with polycythemia vera.  Google didn’t exist.  The internet barely existed.  It was almost impossible to get information.  When I was diagnosed, the doctor said to me, “Your grandmother had leukemia when she was in her 70s and she died.  Your father was in his 50s when he had leukemia and he died.  You're in your 30s.  You do the math.”  He said, “Don’t plan to be here to celebrate Christmas.” 

So I stopped planning my life and I stopped planning for the future.  I just lived for now, which it helped me function.  There was no real MPN community.  There were not people around that I could talk to, that I could go to with questions.  So I went through years and years of different treatments and, by 2013, a doctor said to me, “Your disease has changed lanes.  You now have myelofibrosis and it’s transforming into acute leukemia and you need a transplant immediately.” 

I was lucky enough that there was a donor.  Within a month they found a match and I went into transplant within two months and away from my beloved ocean. 

In the transplant unit, it’s so easy to lose a sense of yourself and who you are.  When you go into, like they had told me that once I entered those doors I could plan on not leaving there for at least a month.  I was going to be in the unit on isolation and that all I could do was walk from one end of the unit to the other which, as I got sicker and sicker and sicker, became further and further and further because my steps everyday got smaller and smaller as I got weaker and weaker.  Eventually, I came to know that it was about 300 baby steps from one end to the other because that was all I could do. 

I got so sick that I began to lose that sense of who I was.  I lost my hair.  I felt just so alone and scared.  There came a time where I was so sick that I didn’t know whether to pray for the strength to keep going or the courage to let go. 

But I thought about those kids that I work with and I thought, “Okay.  This is not going to be the end of my story.  I’m going to keep fighting and I’m going to get back there.” 

So I went into the bathroom and I ran water over my hands and I thought, “Okay, I need to reconnect with this part of myself.” 

I couldn’t take the shower because of the central lines and all the things that happen in transplant.  So I was in transplant for about five-and-a-half weeks and then, when I got out, I had to be in clinic every day, it was very restrictive and my life became defined by what I couldn’t do.  I couldn’t go into a restaurant and eat things off the menu.  I couldn’t go have a salad.  I couldn’t have a sub and I couldn’t… it’s just so hard to remember all the things I couldn’t do but one of the big things was not going into the ocean. 

But the day came that the doctor said to me, “You know, you're doing pretty well.  You can go do something, go a little bit further afield.  You can get more than five miles away from the hospital.” 

So I have my friend drive me to the closest beach.  I could only be in the sun for five minutes.  I got out and, immediately, I could just smell the sea air and hear the birds and know that I was back there, that the ocean was there, it was waiting for me.  I still couldn’t get in but, for five minutes, the sun was on my face and I felt like me again. 

I get back to West Palm.  Life goes on.  You get back to work and things.  You try to find a sense of yourself again, but I still couldn’t go in the ocean.  And every time I would see my transplant doctor, I would ask him like, “Okay, is it now?  Is this it or no?” 

“No.”  He's like, “You have to wait.”  And he said, “I’m trying to save your life.” 

I said, “I’m trying to live my life.” 

Finally, on January of this year, it’s more than four years after my transplant and again I said to him, “Okay, how about scuba diving?  What do you think?” 

He said, “No.” 

I said, “Well, all right.  So no scuba diving.  What if I go swimming with manatees?” 

He got really quiet and I thought, “Wait.  Okay, what is happening?” 

And there was this really long pause and I thought, “I don't know if this is really bad or really good but I’m just going to hang in there.” 

And he goes, “Yeah.  Yeah, you can do that.” 

And I was like, “Wait, what?”  I was like, “Okay, don’t break the moment because he doesn’t know what he said, and that’s fine.  So move on, move on.  Just move on.”

And he said, “You have to know that you're going to have to wear a dry suit and you can’t have any cuts on your body and you have to rinse off with distilled water and you have…”

I was like, “Fine, fine.  Okay.  Sure, sure.  You want me to stand on my head and sing Happy New Year?  Okay.  I'll do whatever it takes.  I’m in, as long as I can get back into the water and that sense of myself.” 

So I did all of those things and got ready. 

The day finally came.  I’m on a boat and I’m still like in a surreal state thinking, “Is this really happening?” 

So the boat is going out to the spring and we get there.  I slip into the water and it was such an emotional moment for me because it was like coming home but to a home that I didn’t think I would ever get to come back to.  And I realized in that moment that there had been the part of me that had held hope that I would one day get back to the person and place that I was and that I loved.  Then there was the other part of me that thought it would never happen, that feared that it was gone forever. 

And those two parts came together in that moment and it was so magical.  I think even the manatees realized that because this baby manatee swam right up to me and put his forehead against mine and I thought, “Thank you, God.” 

I got back on the boat and that’s when I realized that it wasn’t my moment.  That it belonged to everybody who was there that day.  There was this sort of sacred silence.  There was a hush on everybody who was there.  I think they realized how momentous this moment was for me and that they felt honored to be able to bear witness to that moment.  It was a moment of shared humanity, of people just coming together to bear witness to someone who had gone through some struggles, some hard times, walked through some darkness and had gotten to find light at the end of the tunnel. 

So for me, what I learned was that even in brokenness we can find wholeness.  And that joy may look different than we think that it’s going to but that hope has to live in all of us.  And that hope may look different than we planned but that it’s always there and it’s waiting for us.  Thank you.