Best Day Ever

If you use a wheelchair, you know that beaches are not your friend. The heat is typically too much for our bodies to handle, our wheelchairs cannot go on the sand, and if we do use a beach wheelchair, most of them are not comfortable for our unique bodies and require us to transfer. These beach wheelchairs do not float either, so getting into the water is a near impossible task. 

When I was a kid, I used to go to the beach constantly. I cannot swim so I would be held up above the waves and scream as the oncoming wave came crashing down around me. I would lay in the sand, look for shark teeth and shells, and make sand castles. I did this nearly every summer, as most families do. The beach is their happy place. The calming sound of the waves. The wind in your hair. The salty air inhaled in your lungs.

This happy place for most people became a place of envy for me. I saw girls my age without a care in the world going on vacations and posting pictures with their manicured toes in the sand. Kids splashing each other and running into the water. Family friends with condos on the beach as a destination for relaxation. A place I could no longer experience. While my body grew and changed, I could no longer transfer to the beach wheelchairs. I was uncomfortable in them and could barely stay in one for an hour. I would sit in the chair, unable to feel the sand between my toes or feel the ocean water on my skin. The beach became a miserable place, and avoided at all costs if possible. 

That was, until I got to experience the best day ever with Adaptive Surf Project. As I’ve grown in my self identity, I’ve been getting more involved in the disability community. I attended my first event for people with my disability at a Cure CMD Community Gathering at Myrtle Beach. They had an entire jam-packed weekend planned of fun and adaptive activities for us. They had reached out to Adaptive Surf Project to provide adaptive surfing and bike riding. Something I have never experienced.

Photo credit: Adaptive Surf Project

Being the adventurer that I am, I’ve looked into adaptive surfing before. All the organizations I found had a regular surfboard where volunteers would hold on with you. This would simply not work for me. Any bike riding activities I’ve tried, the bikes were not fit for my body. Pushing the hand pedals was too much for me, my feet never reached the foot pedals, and again- I was extremely uncomfortable. These were activities I’ve written off as unable to do. When Cure CMD announced their weekend itinerary, I jumped at the chance.

The only place I have been in community with others like me was at MDA Summer Camp. I haven’t been back since I was 17, so 11 years ago. There is nothing like being surrounded by your people. With people you can relate to. When I go out into the “world” there is no one that looks like me. I do not see myself represented in any media, book, show, advertisement, or even simply discussed anywhere. We pretend to fit in a box and it gets tiresome to conform to society. It is incredibly liberating to be amongst others who learned how to adapt to places not built for them, problem-solve like a champ, and celebrated for who they are. Not made to look, act, or behave a certain way. We would race around camp, joke about how none of us could participate in PE in school, and just get to be. With no walls that we built up high for the rest of the world as a shield.

By some miracle, whether it’s divine intervention or luck, there were a total of five girls (including me) on the trip. One girl was entering the third grade, the fourth grade, the other the fifth grade. Then there was me and another person around my age. Muscular Dystrophy is more common in boys, so it already felt like an exclusive club with us females. And for everyone to be close to someone at their age?! Incredible. The three younger girls all became sweet friends and I became closer to Kelly (she planned the trip and was a rockstar the entire time!). The beauty of this trip was we were also mentors to these girls. Role models to look up to that I never had. I will get more into that later.

Photo credit: Adaptive Surf Project

In the morning, we had our adaptive surfing activity. The forecast was not looking good the night before, but Mother Nature was on our side and it was a gorgeous day. The sun was out, but not too harsh as there were several clouds. It was the mid-80s and the waves were high. I bought cute surfing gear just for the occasion. 

I got to Myrtle Beach and was immediately awestruck. There were mats laid down that aren’t typically there for the beach. Tents were up for shade and every beach wheelchair I had never seen before was there. I was greeted with immense kindness and joy. Everyone was so excited. I made my way down the mats with a huge smile on my face. The volunteers asked my name and where I was from. All the volunteers treated me with such respect and normalcy. Dealing with medical personnel daily and strangers, I am constantly treated differently. With an obvious physical disability, it is rare I am treated my age. Only amongst friends am I at peace (picture how defensive this can be at times). So to be surrounded by a group of strangers who welcomed me with open arms as I was, was already amazing. The day got even better. 

Photo credit: Adaptive Surf Project

They discussed with me any concerns I had, what surfboard I wanted to use, and what would work best to be comfortable. This is another rare occurrence for me. I hardly ever have autonomy over my own body and needs. People just assume and go about things, never asking me or walking me through what they’re doing. 

All the families gathered together and the Director demonstrated each surfboard and ways we could surf. The beach wheelchairs were also for us to use during the time we were there. One girl went first because of the tide. A volunteer lifted the girl up when they were about to hit a wave with superhuman strength. Chants and cheers were heard the entire time. We whooped and hollered and saw the pure joy radiating from everyone. Most of all, the girl’s family. I learned they traveled all the way from Canada for this event. Canada!!!

Photo credit: Adaptive Surf Project

I asked why and there are simply no services for their daughter because of her disability. No camps, recreation activities, or even community. I was shocked. I could not imagine that. Being surrounded by my community as a kid has played a huge role in my development. I chatted with the families and volunteers. Some volunteers traveled all the way from Puerto Rico for us!

I learned that the surfboard I would be using took over 5 years to develop. It was almost like a mini boat that had a seat on top of it. There was a surfboard on the left and right of me. I was on top of one too. They were prepared with multiple cushions, pads, straps, and anything needed for every body type. I was astonished. It is a miracle if something is even remotely accessible, but this was universal accessibility in action. ANYONE of ANY ability, shape, size, etc. was able to participate. A lot of places or organizations claim that but in practice, it rarely happens. 

Another girl went and sat up on the surfboard with support behind her. Her service dog Tibs kept us company and was watching her faithfully. The volunteers consisted of an Occupational Therapist, EMTs, firefighters, nurses, and truly all the best people who I felt immensely safe with. As I watched the girls surf before me, I looked to my friend Monica. 

I said, “Having a disability sucks a lot of the time. But it’s moments like these that I am grateful for.” How many people can say people traveled all the way from Puerto Rico to share their love of a sport with others who are unable to experience it on their own, for free?! It was so beautiful to witness. And to be a part of something special that shows there is good in the world. There were about 20 or so volunteers! Not just any volunteers, but the most passionate and kind-hearted people.

Photo credit: Adaptive Surf Project

Soon, it was my time to brave the waves. I wasn’t nervous at all and thrilled to get in the water. I was transferred to a beach wheelchair and rolled down to the shore to transfer to the surfboard. The OT, Erin, came up to me, and knew exactly what wedges and pads I needed to be comfortable. I felt great and they put straps all over me so I would not go overboard. We even tested it ahead of time and they rocked the surfboard on the sand to ensure I was secure. 

The final touch was a GoPro that my mom had suggested. Once that was secure, I took off my ventilator and was carried like the Queen of Sheba down to the ocean. An entire team of people lifted me up in the air. They lowered me into the sea. My feet brushed the water and I smiled. The white sea foam crowded around me. A wave came splashing in and I laughed. I had forgotten what salt water tastes like. Being in the ocean felt like reuniting with a long lost friend. I was soaked very soon. The water was warm and so refreshing. It had been 14 years since I had been in the ocean. A place that most can access easily. A place for respite and fun was not accessible for me. 

I went out into the ocean with the volunteers continually checking on me. We joked and laughed and they all communicated which waves to take on. There was a team of people behind me, in front of me, and close to the shore supervising. An incoming wave came and they got ready to launch. They gave the surfboard a great big push and I went flying. I felt the wind in my face, the water washed over me, and went so fast! Everyone was cheering and screaming. I held my arms out like an airplane, catching the wind. I screamed and a laugh erupted out of me. Freedom!

Photo credit: Adaptive Surf Project

My body experiences very little movement. I go to my bed, shower chair, and power wheelchair and that’s about it. Imagine all the movements you typically do. Jump, stand, skip, run, tumble, leap. Your body is constantly in motion. Mine is still most of the time. But surfing, I was moving and grooving across the water. Each wave I did, I went further and further out. A volunteer was on the surfboard behind me, holding on to me. The team at the shore pushed me back into the ocean. The volunteers were like a well-oiled machine. They had a system down and communicated flawlessly. We left not one good wave unsurfed (yes, I am making unsurfed a word now). The cool water splashed my face and the waves rocked me up and down. The surfboard wobbled but I stayed steady. We took a photo at the end and I asked, “How does my hair look?” Everyone laughed and said, “Like you were surfing!” 

Once my incredible surfing experience was over, I was not done with the ocean. I had asked to be transferred to a beach wheelchair that could float. I put my ventilator back on and made my way to the shore in the wheelchair. I inhaled a deep, salty breath and took in my scenery. Families connecting. Volunteers in unison. The cream sand, kids collecting shells, and the sun beaming down on me. 

Photo credit: Adaptive Surf Project

One of the girls on the trip who was going into the third grade, did not want to surf at all. She was adamant about that from the get go and said she was not going to try it. The amazing thing was, you didn’t have to! They had a variety of the beach wheelchairs so we all could experience the beach in the way we wanted. The volunteers were so gentle with her and did everything in their power to encourage her. Her parents talked to her but she was not budging. She decided to try a floating beach wheelchair to feel the water on her feet. She did not want to get her hair wet or water to go near her face. 

As a kid, I was terrified any time I had to get out of my wheelchair. The first time I had to try my Hoyer lift, I cried like I was being tortured. A new device where your body is in the hands of a machine is scary. And your chances of being injured by said machine can happen. It is out of your control. I completely understood her fears and reservations.

I had talked with the volunteers and three stuck by my side the entire time, making sure I was safe and enjoying the beach. My mom never once had to push the wheelchair. She just got to sit back and witness my jubilation. Once in the beach wheelchair, I wanted to go over to the girl and reassure her. They wheeled me over and I asked her if she was going to try surfing. She was still uncertain and I told her how fun it was. I told her how safe I felt (I literally was not moving), how everyone was so kind, and they would listen and never do something out of her comfort zone. Next, Kelly went surfing on the same board. Last was the girl who did not want to surf. She would be using the same board Kelly and I used.
She decided to give it only one try and said she was not going out far in the ocean, and her face better not get wet. I loved her sass the entire trip. They carried her out to sea and were close to the shore. They all gathered, gave a huge push and the surfboard shot forward. She screamed, threw her arms up in the air, and yelled, “BEST DAY EVER!” We were all in tears, including me.

They asked her if she wanted to go again, and she enthusiastically said yes. She kept going further and further out, with bigger waves and her screams got louder and louder. It was breathtaking. To see her transformation in a few hours was incredible to witness. I saw so much of myself in her. I did not have these kinds of activities growing up. The only place I got to experience any sort of recreational activity was camp and it was limited to horseback riding or zip lining (I know I am extremely privileged in that sense that many people with disabilities don’t have access to any recreational sports. It angers me and makes me feel guilty at times.) 

She overcame her fears, grew in independence, confidence, and tried something new. I mean surfing is scary! I hope she gets to experience so many more of these beautiful moments. I hope she takes this memory with her throughout life and remembers she can do anything. The world beats down on you constantly when you have a disability, and I hope she remembers she is fearless. She is independent and full of fun and life. I hope she continues to try new adventures. And I’m so appreciative of the opportunities to be a light for kids with disabilities.

But the adventure was not over! We were going to go bike riding with Adaptive Surf Project the next morning. In my hotel bed, I was sore all over. My body hurt. It hadn’t been in that much pain in a really long time. And it hadn’t experienced that much motion in forever. Surfing was worth every ache. I could not wait to be reunited with all the amazing volunteers the next morning that I hardly slept! I was so excited I could not close my eyes. I only get this way about going to Disney World. That’s how fantastic everyone was and a testament to the Adaptive Surf Project team. 

Yawning, I got ready for the day. Once again, Adaptive Surf Project proved they are universally accessible. They had every bike imaginable for everyone. They had worked with a company that builds industrial bikes to carry cargo in a factory. They rigged a wheelchair to be on a platform and someone to bike behind it. They had all kinds of bikes where we didn’t have to pedal and our bodies could be supported. I needed foot support, so I opted for a two-person bike that had a platform. I sat in a little seat in the back and put my ventilator in the seat next to me. A fantastic volunteer, Tom, was sitting on a seat in front of me and pedaled for the both of us. This guy bikes a crazy amount and simply wanted to share his love for biking.

Each participant, family member, and volunteer got to bike. Volunteers were on scooters, hoverboards, and even ran the entire time!!! We were each assigned a riding buddy next to us. Everyone was geared up in neon vests, perfect formation, and we did a few laps around the parking lot to make sure everyone was safe and comfortable. I was ready to go with a sun hat, shades, a neck fan, and my GoPro. 

Photo credit: Adaptive Surf Project

Then, we took off! They picked a perfect four-mile path that had all kinds of terrain and overlooked a lake. The wind blew in my hair and greenery whizzed by me. Another note about adaptive activities, is typically the accessible mechanism is built entirely differently. These bikes were made to where I was at eye-level with Tom. Most adaptive bikes are extremely low to the ground or have someone behind you pushing you. It felt like I was pedaling along and taking in the scenery like anyone else. When we came to the hills, the volunteers even pushed us up! We continually stopped for water breaks and adjustments as needed. I hollered as Tom and I sped past other bikers and led the pack. Shoutout to Tom for giving in to my need for speed! 

Once again, the volunteers were so on top of it and I felt incredibly cared for. Not only that, but there were volunteer professional photographers and videographers! They made sure to capture breathtaking photos and videos of our entire experience. We made our way back to the parking lot, sweating, out of breath, and potentially sunburnt. But all with huge smiles on our faces. We were all transferred back into our wheelchairs and took sweating-after-biking-four-miles photos. We finished our whirlwind of a weekend and gave everyone hugs.

I will never forget these precious memories. It’s hard to put into words what this experience meant to me, but I hope I gave you a glimpse into it. I feel so lucky to have the chance to get to know everyone over these few days and live freely. Do everything in your power to create best days ever.

Photo credit: Adaptive Surf Project