Why I Swim

On Saturday, I will wake up at the crack of dawn and participate in Women Swimmin, a 1.2 mile swim in Cayuga Lake raising money for Hospicare and Palliative Care Services.  This will be my third swim and I’m no less excited than I was the first time. I’m always bowled over by the people at Hospicare thanking us for swimming- it really should be the other way around. I’m so proud to get to be a part of this event. Beyond feeling like I’m doing my own small part to make the world a teensiest bit of a better place, it gave me back swimming. I’ve wanted for years to get back in the pool and swim regularly again. Training for this event motivated me to start a regular swim practice and I’m very grateful.

Three years ago, the day I signed up for my first swim, I posted about why I was swimming. As I get closer to the event, I’ve been thinking of my uncle and I thought I’d re-post his story here. I swim in honor of my Uncle Fred Barnes and my sister-in-law, Cathy Bossard. They both benefited so much from hospice care; they were individuals with a very strong connection to their homes and hospice allowed them to spend their final days in the places they loved most. I swim for them, and for everyone who benefits from the amazing work Hospice does.

To everyone who has donated in support of my swim, thank you, thank you, thank you. It has meant so much during those early cold mornings to know you were out there cheering me on. As I plunge into that chilly lake water Saturday morning, I’ll be thinking of you. And my Uncle Fred.

My uncle Fred & me

Three years ago, my brother was in town for his birthday and we decided to drive to Montour Falls and go to breakfast at one of my uncle’s favorite places, Chef’s. And then while we were in the area, we decided to set out on an adventure and find my uncle’s old camp, a place that played a huge part in our childhoods but we hadn’t visited since Fred passed away.

We did find it, through some half-assed directions (Dad- you need to know that a ‘great big hill’ means something entirely different to Ithaca people) and the miracle of Google maps on an iPhone.

It was so weird to be standing in a place you knew so well from childhood and that you hadn’t visited in seventeen years.

My brother Kevin & sister Katie in front of
what used to be Fred’s camp

My uncle Fred was my dad’s oldest brother. He was a confirmed bachelor, and oftentimes something of a crank. He wasn’t that crazy about small children, especially their germs, and would often decline hugs for that reason. As a painfully shy child, I was always relieved by this. Being made to hug people, even family, can be kind of unnerving if you’re shy and I was always grateful to uncle Fred for letting me off

my dad, Uncle Fred, Uncle Bob

the hook, whether he knew it or not.

Once you got older, and could help out on the boat or ride snowmobiles or had learned not to mess with his stuff and not to slam the screen door, you were okay by him. He loved his boat and waterskiing, and he loved few things more than being able to brag that he had taught his nieces and nephews to ski, rarely needing more than two or three tries to get right up.

He also taught my dad how to waterski. This may not sound like such a big deal, but my dad lost his left leg above the knee in Vietnam serving with SEAL Team One. My dad learned how to waterski on one leg, years after he’d returned home and learned how to walk with a prosthesis. I remember being on the raft out on the lake watching as Fred called out instructions to my dad in the water, looking all roly-poly in his life vest, the tip of his one ski sticking out above the water like a little shark fin. I watched as Fred gunned the boat and raised my dad out of the water only to have him wobble and fall back in with a huge splash. I watched him do it over and over again. And over again. I heard my mom talking to my aunts about how she was worried Dad was getting tired or might get hurt.

me & my dad at the lake

I watched him try again and again. My dad wouldn’t give up and Fred wouldn’t give up on him. And then finally, he was up. And stayed up. And there he was, flying by us, on one leg, one ski cutting crisply through the water. I don’t remember how old I was when this happened, but I remember being so proud of my dad that my eyes filled with tears and the tears spilled out on my cheeks as the boat’s wake rocked the raft.

Fred lost an eye to cancer when he was a young man. They found a tumor on his optical nerve. If it had happened a few decades later, they most likely would’ve been able to remove the tumor and save the eye. (The neurologist and author Oliver Sacks was diagnosed with ocular melanoma nine years ago- although he lost sight in the eye, it was treated with radiation and lasers and left intact. Unfortunately, he learned earlier this year that his melanoma had metastasized to his liver, as happens in about 50% of ocular melanoma cases.) It wasn’t a big deal to us. In a family where my dad had an artificial leg and my grandmother had full dentures, a glass eye was no big whoop. We used to joke that before long, we’d be able to make a whole new person just out of everyone’s extra body parts.

my dad, Fred, my grandpa George,
Aunt MaryAnne (picking her nose) and Uncle Bob

Just before I graduated from high school, a checkup discovered a mass in uncle Fred’s liver. He went for treatment and learned it was cancer. He had what they called recurring ocular melanoma, meaning it was a melanoma type of cancer that had originated in his eye,  and it would keep returning. Melanoma is a particularly deadly type of cancer- it’s why skin cancers are so dangerous. (Melanoma is cancer of the melanocytes. Melanocytes are found in two places in your body: in your skin and in the colored parts of your eyes. Ocular melanoma is much rarer than melanomas that occur in your skin.) Melanomas don’t respond well to traditional cancer treatments like chemo or radiation. The most successful way to treat melanoma is to remove as much of it as possible. And do so each time it comes back, and in each new location.

They removed nearly three-quarters of my uncle Fred’s liver. (The liver is pretty cool, by the way. It regenerates!) It came back, took over his stomach and then it was just unstoppable. Fred’s doctors were at the University of Pittsburgh. In addition to his treatments, surgeries and check-in visits, he also participated in some trials for immunotherapy, which seemed to have a great deal of promise in treating melanomas. My dad drove him to his appointments and then brought him back to our house to recuperate until he felt strong enough to go back to the home he shared with his mother. He always needed to just be left alone after those doctors’ visits. I’m learning that I’m a lot like him; we’re people who need alone time to regenerate and recharge ourselves. Being surrounded by people- even those caring for us- is exhausting.

When he was at our house, we didn’t fuss over him. He got Kevin’s room when he stayed with us and he could come and go as he pleased. My mom would make sure we had his favorite foods (and snacks, most importantly) and if he needed anything, he just had to ask.

Bob, Fred, my dad & Grandpa George

Fred struggled to deal with the hand he had been dealt. Especially when they had to remove part of his stomach and he had to change his diet significantly. It frustrated him to no end that as a person who had always been so active, he was now tired and frail. Hospice was an enormous help when we finally called for their services. In addition to the things hospice is known for, like getting him set up with the necessary equipment so he could be at home and not have to deal with any more hospital stays, they provided support to his family members and counseled him, helping him work through his emotions.

I had just moved to Rochester to my first real grown-up apartment and grown-up job. I was lonely and didn’t really like the city so I came home often. I observed the changes in Fred first-hand. Hospice helped him find peace. It was extraordinary to experience.

All the Barneses got together for Easter that year. Uncle Fred wanted to be a part of everything. He recorded everything on video. Even though he really couldn’t eat, he sat at the table with us at each meal. He laughed at the cousins trying to balance spoons on our noses at the table. And when a bunch of us went out to the bar that night, he insisted on hugging each of us goodbye as we left. I’ll always remember how fragile he felt, how it seemed like I could feel every bone in his body when he hugged me, and how tightly he held all of us, as if he was worried maybe it might be the last time.

Thanks to hospice, Fred was able to die in the place he loved best, his camp at Cayuta Lake.

Earlier in the day, before we set out to find Fred’s “lost lake camp” and before we had breakfast at Chef’s, I signed up for my first Women Swimmin’. I wonder now about that timing, if Fred somehow led us to his camp as a reminder of why this swim is important. I felt Fred with me that first year I swam. I thought about what a kick he would’ve gotten from me doing this event. So I did it again the next year. And I’m doing it this year as well.

You can support my swim and help others experience the services Fred did by clicking this link.