I wielded my small Prius into the parking lot of Old Venice Restaurant in Point Loma. The only parking space available was the disabled spot. I looked around because I didn’t want to spoil the surprise, it was my friend Martha’s 70th birthday party and she was entering on the other side of the restaurant. The next thing I knew I heard a knock on my car window, “Are you handicapped?” The squeaky voice was coming from a small woman with a large handbag, growing louder and more demanding, “Are you handicapped?” I pointed to my placard and said, “If you need the spot more than me, I can move.” She said, “That would be great.” A large sedan was hovering nearby and it pulled in as I pulled out of the parking lot. I drove around the block several times before finding a faraway spot. Something about her tone tugged in my heart. Something about the blue placard in my car made me tear up. Should I feel guilty that sometimes my foot drags and balls up with dystonia? I walk on the outside of my foot, scuffing my shoe, but at other times, I can walk nearly normally. How handicapped do you need to be to use a blue placard? How much does it have to hurt? Did the doctor sign off on my disabled placard because it’s a foregone conclusion that I will eventually be unable to walk?
On the same day, I got an email from the Louise Jane boat captain, Andy King, part of the Channel Swim Association saying “I’ve got a spot from June 26th to July 3rd 2024, do you want it?” My first instinct was, Yes! I want a spot! Yes, I want to swim the English Channel. Yes, yes! With my whole being, I want to focus on living fully and freely. I want to jump in the ocean and swim from England to France. I want to be an athlete, not a disabled person. You can have my parking spot because I’ve got a place with a boat captain! Getting a reservation with a boat captain to escort solo swimmers across the English Channel takes years and years.
Organizing my thinking is harder now, I have big feelings and thoughts that vanish and I get consumed by something in the present moment like butterflies or my dog barking. I am not sure if Parkinson’s is the reason for my diminished attention span or if it is because of digital consumption. Still, thoughts feel windy in my mind, a scattered laundry line of ideas, insights, to-do lists, and people’s names blowing around.
October 2023
I partnered with coach Sidney Russell’s Swim Open Waters to train for the English Channel. Before that, as an adult, I was swimming about eight miles a week, and I completed the Portland 12-Bridges Swim, an Alcatraz swim, and several La Jolla and Coronado rough-water swims. In 2022, I swam year-round without a wetsuit. In winter 2023, I signed up for another round of The Big Chill, the La Jolla Cove Swim Club’s friendly competition to track cold-water swimming.
My son was playing in his last season of NCAA Division 1 water polo and I traveled to Santa Clara University, Pepperdine, Colorado, and Los Angeles to see him play.
My work as a reading teacher in the court schools was increasingly busy and, in addition to teaching students how to read, it involved Microsoft Teams meetings, student Information systems, English language development collaboratives, and curriculum development. A seasoned ocean swimmer told me I didn’t have to wait to retire to attempt the channel. Looking back on that, teaching and motherhood can be all-consuming and I don’t know many teachers who are marathon swimmers because the 8 A.M. school bell rules teachers and our schedules aren’t as flexible. You can only swim so much before 8 A.M., so I needed to double up workouts to get my mileage in some days.
In October, I did my first 2-hour ocean swim. In addition, there were many pre-dawn swims and pool swims. The sky creates a unique light show every morning; sometimes it looks like swirls of cotton candy with pastel hues of baby pink and blue and other times it’s a turquoise blue. The silhouette of palm trees, cormorants, and seagulls punctuate the clouds.
October 24, 2023 Morning swim in La Jolla Cove.
In addition to doing some night swims, I started waking up at 4:45 A.M. to swim or do weights before school. I’d shuffle out the door, my right foot scuffing the sidewalk because of gait issues from Parkinson’s. The only light visible was the main lifeguard tower at La Jolla Shores. Dolphins and horn sharks scurried along the white sand underneath the waves; in the dark, each catch of my hand in the water triggered a puff of bioluminescent bubbles.
November 2023
In November, I announced that I would attempt the English Channel and started a fund-raising campaign for the Michael J Fox Foundation for Parkinson’s research. I did back-to-back 2-hour ocean swims in addition to my bulk pool training. People started to donate to Parkinson’s research on my Classy page, and they volunteered to kayak beside me while I swam. I was astounded by people’s generosity of time, money, and spirit. Again, thank everyone who donated to the Michael J Fox Foundation for Parkinson’s Research and my boat fee. My husband helped take our kayak to the water. My crew chief, Sara, and my swim pod helped me plan and strategize. The water was getting colder and my hands turned into icy claws as I completed my swims.
December 2023
The ocean temperature was hovering around 61 degrees Fahrenheit; it was getting choppier, perfect for training. I was overwhelmed and chose to focus on my coaches’ instructions each week. Day by day. Little by little. Stroke by stroke. My swims got longer this month. One day I swam 9,200 meters at Coggan pool and the next day I swam 3 hours in the ocean with my son kayaking with me. When you are swimming, you are alone with your thoughts, some swimmers count, some sing, some meditate, some pray, and some plan; I do all of the above.
January 2024
I started the year by swimming 10,000 meters in the pool. January included my first 4-hour swim followed by a two-hour swim in the ocean. Many brave ladies including Dianna, Kimmy, Bea, Maureen, and Lailani accompanied me part of the way; we fastened our lights to our swim caps and dove into the waves. Sometimes, friends were pummeled by a set of waves as we swam to the quarter-mile buoy. Often, it felt like we were in a washing machine, but the hardest part was the after-drop. My fingers and hands turned half purple and white and I couldn’t stop shaking. My training pushed me past 20,000 yards each week, or about 11 miles.
Scott Mora and his team (thank you Andrea) at ™ 5150 created a fantastic blog for me. If I wasn’t so tired from swimming, I could have written much more.
The water temperature dropped to 59°, but it felt like 57°. On my training swims, it was hard not to stop and follow the lobsters, crabs, stingrays, dolphins, opaleye fish, bass, sea lions, and all the other creatures that surrounded me in the ocean; but I couldn’t afford to slow down because of the cold water. I needed to acclimate myself to the cold water in the English Channel. I did laps between the Main Tower and the ¼ mile buoy at La Jolla Cove.
On January 28th, something amazing happened. During our ocean swim, orcas swam into the swim lane in La Jolla. We were hovering around the ¼ mile buoy when we screamed, “Dolphins” as several fast-moving large dorsal fins popped up north of us. I looked at Dianna and said, “Orcas?” We shook it off and headed back to the shores. However, as we were getting out of the water, my phone started to blow up with images and accounts of orca sightings. I knew from the size and speed of their fins that what I saw wasn’t just regular dolphins.
January dryland training with my swim pod, Heather and Sara helped me get my skates on.
February 2024
In February, I left the comfort of San Diego and flew to San Francisco to participate in the 24-hour swim relay at South End Rowing/Dolphin Club. It rained a lot and the water was around 53 degrees. Members of team Mermaid Mayhem swam multiple laps around the aquatic park including in the middle of the night. It was, as Suzie Dodds advertised, weirdly fun. I learned how to trust strangers, not bad strangers that carjack you, but friendly strangers like Michele who have snacks and make you laugh. I learned that powerful athletes and coaches like Sidney can be shy. I learned from Louise that ice swimming is a thing and from Diana and Carol-Lynn that patches are cool on your parka. Mia, owner of HardCore Sports, designed our bad-ass bathing suits with her cat, Mayhem’s picture on the posterior. On Sunday morning, a hurricane warning caused massive delays at the airport and we communicated as each member of Mermaid Mayhem scrambled to get back to their regular lives in varying locations around the United States.
Team Mermaid Mayhem 24-Hour Relay
On February 1st, I met with my new primary doctor for the first time. I asked her to complete my Channel Swim Association medical form. It went something like this, “Hi my name’s Ellen and I have Parkinson’s disease. I would like to swim 21 miles in the English Channel this summer.” She sent me to the pulmonologist, swallow therapist, speech therapist, radiologist, and importantly, the neurologist. I started pushing my swim mileage to 14 miles per week.
March 2024
An excellent and humble ocean swimmer, Cindy Tobin Walsh, said that when you train for the channel you need to take special care of yourself. Monthly, I was treated with acupuncture by Theresa Boone in Pacific Beach. My husband, Ruben, cooked meals for me, including my staples, salmon and sweet potatoes. However, on March 11th, 2024, when I swam around Coronado Island my medicine, nutrition, and body were out of alignment. I planned to turn the swim into my 6-hour English Channel qualifying swim. However, nature had other plans because the water was too warm at around 61° in San Diego Bay. I filled up with pasta the night before, but I didn’t eat breakfast. Then, I forgot to take the Parkinson’s medications I had in my pocket. I was distracted by the interview I did with Angela Lee. She could not be more kind, but my voice felt small as she filmed a reel for my Parkinson’s research fundraiser. As I was talking, a fly flew into my mouth – perhaps sending me a bit of needed protein for the endurance swim. Unfortunately, the protein that I need is in my brain. “Parkinson’s disease is a progressive neurodegenerative disorder resulting from the death of dopamine neurons in the substantia nigra pars compacta.”
Swimming under the Coronado Bridge in San Diego Bay in March 2024
Sidney and Dan have circumnavigated Coronado countless times, starting in Glorietta Bay. I swam under the bridge, which is ironic because I’m afraid of driving on the bridge. Then, I continued through the boats downtown and by the aircraft carriers. When I turned the corner, I saw Fort Rosecrans National Cemetery, and I thought about my parents and other loved ones buried there. I wanted to make them proud, to write a story worth reading for my book-loving mom.
According to Coach Sidney, My starting stroke rate was faster than normal and I needed to keep an even “all-day” pace. Being okay with being slow takes humility.
I fixated on the white, mysterious mucus that floated in the bay. A boat motored past us and I ingested the oily, salt water of its wake, I could feel my throat swell up. I couldn’t drink the diluted carb mixture tossed as I trod water. When I exited the bay into the open ocean, the water became colder, and I felt like a salmon swimming upstream. I became disorientated. I just remember Sidney saying, “Follow the kayak!”
When I reached the beach by the towers I heard the familiar voices of my friends and family and I limped towards them. Open Water Swim Academy’s Summer Wesson helped me get warm in her red jeep. It was the second time that I blacked out while swimming.
Swimming for almost 12 miles is an act of surrender. My friend Mandy said that maybe I was doing penance by swimming in the cold water for so many hours. Maybe? It was Lent, the season when both Christians and Pagans await the return of the Sun/Son and when people consider all the suffering in the world. During this time, a friend’s husband was battling prostate cancer and suffering in the most excruciating ways. It is unbearable for her because, among other reasons, they are soul-mates who found one another later in life and won’t have the luxury of being together during the sunset of their lives. I dedicated many of my swims to them and his battle. Somehow, life becomes more precious when viewed from the rearview mirror.
Adjusting to the cold is something my body never got used to, sometimes it felt like my teeth were so cold they were going to fall out and my fingers turned into little wings that were webbed and couldn’t separate.
The best thing about it though was after so much exertion, burning about a thousand calories an hour, or 6,000 calories per swim, I was so exhausted afterward that I had fewer Parkinson’s symptoms. I’d feel horrible from the sore throat and chafing of my swimsuit, but it wasn’t from Parkinson’s. Can that be considered a win?
Initially, I envisioned a clear exchange of carb-loading heaven for fuel. My mantra was, “Will swim for cake!” This vision included snack bags full of donuts, cake, chocolates, jelly babies, and a Willy Wonka wonderland of delights. In reality, my stomach was a fickle beast as I plodded along in the ocean. Chocolate milk made me barf and the fragile balance of my gut and all the salt water limited my appetite and my consumption of sweet treats. Instead, I consumed squeezable baby food (primarily squash and sweet potato) and Carbo Gain. Salt is corrosive on the body, just as it is on cars; think about all the cities where they salt the roads when it snows; the vehicles have large holes and rust discoloration across their carriages.
After the Around Coronado Swim, Coach Sidney debriefed with me at Brick N Bell. She was thorough and I could see in her eyes that she was concerned. I needed to make adjustments for my required English Channel 6-hour qualifier swim.
March was full of doctor’s appointments needed before my primary doctor would sign off on my English Channel Swim Association medical forms. Also, my son brought home three friends for spring break into our teeny townhouse with my crazy dog Oliver. I learned about the NOAA buoy from my coach and started tracking it, hoping that the temperature would decrease so that I could qualify for my qualifier in San Diego. The water temperature in San Diego didn’t cooperate; it started hovering around 60 °.
April 2024
On April 2nd, Sara drove me north to Marina del Rey and met Angela and Sidney. I did my stretching, said my prayers, and dove in. I put my head down, only lifting it to the left side to breathe so I could see either Angela or Sidney as they kayaked next to me. We moved like ducks in a row from pier to pier. I repeated the same prayers over and over in my mind. My pit stops were to drink my carb drink and report to the coach if I went pee or not. For me the only way to overcome hypothermia was to make sure I was hydrated and consume enough carb drink or baby food nutrition; any variation in my hydration level could result in me becoming hypothermic like I was in the Around Coronado Swim. When I became hypothermic I had diminished cognitive ability and my communication issues were even more significant. I could only respond with an index finger to signal to my coach when I went to the bathroom and that I was okay. Also, I discovered that earplugs helped me keep heat in while swimming, so I started wearing them.
I swam at a constant pace. Angela arranged for some friends to meet us along the way. In addition to my earplugs, I was wearing the required regular swimcap and bathing suit. I couldn’t hear her friends. I just remember trying to stay at the same pace as them. I was heading towards Malibu, just past the Santa Monica Pier. At one point Angela and Sidney told me that they saw Mola Molas and it reminded me of my favorite book, Greyson by Lynne Cox.
For my qualifier swim, I swam about 9 miles in 59-degree water for 6 hours. Each month I was adding an hour at a time and pushing through the “bulk” weeks when my training was 30,000 + yards per week was all-consuming. I showed up to work with wet hair and sand on my shoes. But I had all my paperwork turned in to the Channel Swim Association secretary, paid for the Air BnB, and completed the qualifying swim.
May 2024
To say, it was a busy month is an understatement. The first week of May, I swam 34,000 yards, including a 4-hour swim in the ocean and 10,000 yards in the pool. May 12th was Mother’s Day and I was fortunate enough to get support from my friend Dianna and her husband, Cam. They kayaked for me for a seven-hour swim; handing me my baby food and carb drinks. I found that after two hours of swimming, I became a popsicle. I can’t feel my limbs and I can’t speak. I learned to motion that I was okay, even though I didn’t feel okay. I repeated the same prayers over and over again as I swam from the main tower at Shores to the ¼ mile buoy at La Jolla Cove.
At the end of the month, we flew to Colorado Springs, Colorado to attend my son’s graduation From the US Air Force Academy and witness his commissioning ceremony at the historic Carlton House. For 21 years, my son has felt like an extension of my heart. I know it’s dramatic, but that’s how it feels with Parkinson’s. I have anxiety that manifests itself by worrying about my son to the point of excess. It’s a small miracle that he survived my crazy mothering. Not only did he survive, but he also thrived. He graduated from the United States Air Force Academy and became a Second Lieutenant.
The Air Force Water Polo families and my son’s friends’ families will hold a special place in my heart. The other moms lifted me, and I am grateful to them. The families are also part of the team, and what you go through watching your child manage sports, military duties, and athletic training is unique. That chapter closed, and as a parent, I learned that sports are about pushing yourself, learning, and the relationships you make and foster. Everyone wants their child to shine, which means contributing to the team, the community, and, ultimately, the world.
Ellen, Sam, and Ruben at Eagle 8’s Commissioning Ceremony.
June 2024
On June 4th, my friends and I met with Jeff Zevely of Channel 8’s Zevely Zone at La Jolla Shores. My friends were incredibly kind, said nice things about me, and even tried to create a human shield because I didn’t want to be in my bathing suit on the news. People donated to my classy page for the Michael J. Fox Foundation and a GoFundMe that Zevely Zone producers and my friend and administrator, Dr. Leilah, encouraged me to create. The GoFundMe helped pay the boat fees, Louise Jane Charters, for the English Channel attempt, which amounted to around $3,500.
On June 8th, I swam from the Bahia Hotel in Mission Bay to La Jolla Shores. It was eventful because of the flood tide exiting Mission Bay. I remember looking at the same fishermen on the rocks for at least an hour as I swam in place. Then, Sam got kelp stuck in his kayak rudder and I had to go back and pull it off before fighting the flood tide for a second time. Once I pushed out into the open ocean, it was a different world. I’ve always been hesitant to swim around Point La Jolla, but it was so clear and the eelgrass is a vivid chartreuse that contrasts with the orange and blue fishies. It was glorious, and the kelp forest is in better shape there. The lifeguards pulled over a speeding boat that raced past me towards the cove. My son kayaked for me, for almost 9 hours. I thought I was crushing it before I realized that my Strava was tracking kilometers instead of miles. I will never forget that day as one of my favorite training swims because I lost track of time in a good way. I was a slight drop in a different underwater world. The stretch from Mission Beach to Wind N Sea was relatively warm at 62 degrees and, although I had to thrust my hands forward because they were so cold, I was not shaking uncontrollably.
Time sifted through a sieve-like water through a funnel, and on June 22nd, my cousin Craig drove us to the airport, and we embarked on our journey to England. Two days after the summer solstice, I hoped for warm weather. On British Airways, they served curry, which was a delight because I love Indian food. My Parkinson’s symptoms were not too bad because I was taking my carbo-levodopa every 3 hours. When the plane took off, Ruben handed me a book Dianna and my swim friends made for me with letters of encouragement, and tears watered my face. After our 10-hour flight and hour-and-a-half Uber ride, we reached our nondescript hotel in the Chelsea area of London. We took the train from Victoria Station to Dover Priory station the next day. Then we took a cab to the car rental. I started to feel anxious because the car rental was right by the exit for the Chunnel, and massive German trucks were speeding past what felt like a busy freeway. I had envisioned Dover as a small farm town; instead, it’s a bustling port city. The horror started to flash over me as I realized I was going to drive a car on the opposite side of the road in a roundabout with massive German trucks coming towards me. I drove the rental car about 3 feet before I decided to park there and take an Uber to our hotel. On the first night, we stayed in the old Victorian Hotel (now a Best Western) by the marina. It was clear and warm, and you could see France from the bathroom window. If only it had stayed lovely; we joked with the Uber driver that we brought the weather from California.
View of Dover Beach from the Best Western Window.
It was sunny on our arrival day, and you could see France in the distance.
The next day, we returned to pick up the car with Maureen, who traveled to England from Japan and was an expert wrong-side driver.
At the grocery store, Sara, my crew chief, used her power of persuasion to get a shopping cart; they required a pound coin, which we didn’t have, to unlock, and she coerced the security guard into giving us one by telling him that I was swimming the English Channel and that I had Parkinson’s. He was so impressed that he decided to take a selfie with me and gave me a huge kiss and a free shopping cart. People’s level of esteem was conversely equivalent to their knowledge of marathon swimming; that being said, I don’t think the security guard at the grocery store in Dover knew much about Marathon swimming; most certainly, the Uber driver that we hired in London (who thought I should be on the BBC that night) also knew very little about the sport.
I met a friend for dinner in Dover; we’d only talked on the phone once. She lives in London and took the train down because I was too jetlagged and didn’t have enough time to swim with her during my ½ day in London. She also has early on-set Parkinson’s and swam twice in an English Channel relay. We had a lot of shared life experiences and symptoms: bilateral floppy foot and decreased functioning with our right hand, non-motor symptoms, and the need to exercise, in our case, the need to swim just to be alive. She wished to keep her diagnosis anonymous at the time, and she was participating in a research study and couldn’t swim. She was struggling when she first messaged me on Instagram. I told a stranger: SWIM! Find a pool, a lake, a river, or the sea. She gave me a copy of the book The Salt Path, which is the true story of a couple that endures the elements and high doses of exercise; extreme exercise helps the husband with his neurodegenerative disease.
She invited Dover resident Sarah Philpot, the first British woman to solo swim across the most dangerous channels, to dinner, and I learned her “Ten Commandments” of open water swimming; she needs to write a book about it and share her wisdom. The two commandments that stood out the most were: “1. Respect: respect the challenge ahead of you, the unpredictable tides, the wind, the rain, and the sun. You’re at the mercy of Mother Nature and her unexpected twists and turns as she mimics life’s journey.” Also, “8. Suffer: when you feel pain, think of others who have suffered more than you.”
The Air BNB where we stayed was a centuries-old farm with beautiful gardens and sheep.
When you swim the English Channel, you have to book at least a week’s window of time to swim in the best weather; then, you sit on the “Dover Coaster” and wait your turn or slot. Friends and family arrived at the Air BnB. My friends and family spoiled me; they labored over dinner every night, and we enjoyed charcuterie platters.
We swam at Sunny Sands Beach and Dover Harbor. The sun was out, and it was a short swim. I was drinking lots and lots of water and using the foam roller to stretch my chronically rigid muscles.
After a walk-through on the Louise Jane, Sara gave Captain Andy King a Padres’ baseball cap. He said, “You Americans do like your baseball, don’t you?” The next day or so, I received a phone call from Captain King confirming that I would attempt my crossing early on the morning of June 29th.
Friends and family, on the night before my swim, we’re wearing the fancy shirts LynnMaria made.
We left the Airbnb around 2:45 in the morning, and we arrived in Dover half an hour later. Sara and I prayed at the harbor, and Scotty, Jenn, Ruben, Sam, Dawn, Murray, LynnMaria, my niece Erin, Kari, and her daughter Maren sent us off. The boat would hold only the pilot, his two sons, my brother and support swimmer Jefferson, my crew chief and accomplished Ironman athlete Sara, my same-pace support swimmer Lailani, and Ironman and veterinarian Maureen. Sarah Philpott had said to show no emotion, neither fear nor happiness. I was gathering all my strength and all my courage. I’d done everything I could to prepare, and this was the moment I had been waiting for for more than a year. This was my fight, my chance in the ring, my day to swim the English Channel. What would Mother Nature have in store for us?
Sara is writing in the swim log.
Thanks to Sara, I had my Parkinson’s meds, and my nutrition was prepared and labeled. We had glow sticks, whistles, warming pads, a thermal blanket, and scissors to cut my suit off when I got out of the water. It was challenging to understand the captain’s and crew’s accents. They said that we were headed to Sapphire Cove to start. I said the name was so fitting because the water looked like a sapphire color. He looked at me askance. I realized it was not Sapphire Cove but Samphire Hoe, where I would jump out of the small motorized boat, swim to the beach, stand up, raise my arms, and wait for the boat horn.
The horn sounded At 4:04 in the morning, and I dove in, put my head down, and swam towards Louise Jane. The sun was already rising, and the sky was pink and beautiful. The water was about 57°, but it was clear, not too cloudy. There were a few other boats that started at the same time. My costume included a layer of diaper cream, Vaseline, and a little flickering green light on my cap. You can only wear a bathing suit, a regular swim cap, and goggles. I began reciting my familiar prayer in my head. I had an intention list and planned to change my prayers each half hour. My friends held up the whiteboard with messages and reminders. They tracked everything on a paper titled “How to get Ellen Across the Channel.” Sara kept track of my stroke rate, my feeds, and my meds.
The water felt choppy, like a high tide; waves were coming at me from all different directions; white caps were on the left and right. Accidentally, I took several gulps of seawater. My stomach was not feeling well; I needed to go to the bathroom. I was doing my “power pee,” which meant I was peeing while I was swimming, an essential skill for marathon swimmers, but it felt like rocks were accumulating in my abdomen. I had to keep moving so I wouldn’t get hypothermia.
We had all intentions of making it To France. I’d followed the training plan. Earlier in the month, I swam for 10 hours one day and 4 hours the next, a broken “channel” swim. I had swum almost twelve miles around Coronado. I wanted to incite hope in people who were feeling less than hopeful, like my friend’s husband, who was fighting cancer, and everyone who was struggling with Parkinson’s symptoms like me.
Every time I put my head down and tried to swim, I’d get pulled off course, the tide moved me away from the boat, and I’d hear a loud “honk.” I listened to the whistle and stopped to drink my carb drink. I heard the whistle and stopped for my brother and the crew to scream, you’ve got to push to make it to the shipping channel by 4 hours. I heard a loud cheer; I was swimming beside colossal cargo ships in the channel. I’d made it.
However, a short while later, Captain Andy told Sara, “Your girl’s getting cold.” The Captain needed me to stay by the boat between the two lights, and I kept veering away. My stroke rate dropped. I’d swum 7 miles, a third of the way, far less than I completed during my training. Sara tried to intervene, but after too many danger signs, the Captain pulled me.
I was shaking. But most distressing, after cutting off the swimsuit, I couldn’t control my insides, and a dark, grainy liquid filled my suit and the tiny boat toilet. I was sick everywhere. If you didn’t know before, people with Parkinson’s can’t smell. So, I have no idea how horrible I smelled; that made it worse. I’m assuming it was pretty significant and overpowering. It was one of the most humiliating moments of my life. I was inside the bathroom with Maureen, horrified. Then, I was bundled on the deck of the Louise Jane as it motored back to Dover. My brother said, “I know how we can see if she’s okay. Ellen, who do you like better, The Dodgers or The Padres?” I opened my mouth for the first time to say, “I hate the Dodgers.”
We waited for our car at the dock; we were back long before we had anticipated. I was ill in a public bathroom. It was humbling.
When we got back to the Air BnB, I continued vomiting. I locked myself in the bathroom and lie down on the tile. My sister-in-law, Dawn, brought me the anti-nausea meds I should have taken before the swim. The skylight opened to a view of the English countryside. I couldn’t think; I watched the trees sway in the wind. I’d come a very long way to fail, to fail miserably. I remembered what Heather (aka Tall Heather) said about her experience coaching a swimmer across the channel. Her swimmer got SIPE and was in the hospital for 2 weeks in England. I couldn’t afford that. I was going to get home. I had six more days in England before my flight.
I took a hot bath. Then, I remember Dawn towering over me. “Don’t fall asleep in the tub! You can’t sleep in the tub!” Sara and Dawn broke the bathroom door lock and woke me up.
July 2024
We flew home on the 5th, and I went to urgent care on the 6th. I had water in my lungs a week after the swim, or pneumonia, or both. They brought in a mobile Echocardiogram to see if the swim damaged my heart. The cardiologist was not pleased. I said, “I think I’m good to go.” He said, “YOU are not good to go.”
July was all about physical recovery. But some mental recovery, too. I remember feeling like I couldn’t go on. I’d publicly humiliated myself. Most of all, I let down the people who found hope in my event. But, for all of my feelings, not one person was mean to me, and together, we raised $17,430 for the Michael J. Fox Foundation for Parkinson’s Research.
People made generous offers to help me find an English Channel spot in the best month to swim, August, or a Catalina Channel spot in the fall. They offered to crew for me. This meant a lot to me. They believed I could still do it, but my body told me something different. My body said that the salt, sun, stress, and carb-loading made me feel less healthy.
August 2024
I started swimming again. And what did I see? A turtle! I returned to a murky San Diego ocean, but on August 1st, it was clear, and the turtle emerged like a beacon swimming north in La Jolla Cove, a symbol of tranquility and steadfastness. Turtles and warmth bring me joy. Rather than swimming competitively, I found my focus, swimming for health and joy.
September 2024
On September 8th, although San Diego experienced an intense heat wave, summer was over for me because today was the La Jolla Cove Swim (formerly called the La Jolla Rough Water). I swam in this event 46 years ago!
My goals were reasonable: no lifeguard rescue and finish before the cut-off time. I did “the whole enchilada,” a 3-mile swim followed by a 1-mile race. Parkinson’s requires that I leave my ego at home because, as much as I swim, I am getting slower and slower. I have to be okay with giving my best without doing my best times. Sprinting (or the inability to sprint) means something different for me. But I dove in, swam in the incredibly warm ocean, and spent time with friends and family, so that’s a win for me.
October 2024
In October, the lifeguard towers moved to their off-season huddle. The fog made the world’s surface disappear, but fish and leopard sharks swirled beneath the clear salt water. If I had a mansion, I would give Parkinson’s one room, maybe a porch or a closet, and all the other rooms would be for the rest of me. None of us is just one thing: our worst mistake, the disease we’re fighting, the job we do, or our zip code. When Parkinson’s starts moving into my kitchen, the office, and other rooms, I will send it away like a pesky fly. Shoo!
What rooms do you reserve in the house of your soul? Who lives there? Where do you spend your time?
November 2024
At Thanksgiving, a relative said, “Better luck on your next swim.” Do I need more luck? The most amazing people supported me financially, creatively, and practically. Who meets people in the YMCA locker room and then travels to England with them five years later? I was lucky enough to share my story on the news with my church community, work, and family. As Clarence says in It’s A Wonderful Life, “No man is a failure who has friends.”
December 2024
Advent is a dark and difficult time. There is so much grief, pain, and sadness, especially for the caregivers, mixed in with the joy and love of the holidays. This year, I miss the friendship of planning a big swim, and I am keenly aware that right now, people are losing “their person,” the one who will be a voice in their minds for the rest of their lives.
But, most of all, I feel grateful to be alive each day. I am a sojourner here, like all of you. My plan now is to help others who have helped me, and someday, we will be able to swim for joy and health, preferably in a warm ocean somewhere on this big blue marble.
Happy Holidays! Merry Christmas!
With love,
Ellen