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Sailing with Ali

Like many others, I was not born with epilepsy. I had my first seizure when I was 17 during my senior year of high school. My three best girlfriends and I decided to go up to the Boston Museum of Science for the day. While we were there we went to a presentation on lightning. We watched huge simulations of lightning complete with loud crashing noises and flashing lights. I remember seeing the sign “WARNING: This presentation may potentially trigger seizures for people with photosensitive epilepsy. Viewer discretion is advised”.

On the drive back to Rhode Island from Boston I had my first seizure. Luckily, I was in the back seat with my dearest friend and crew Ali, who believed the best thing to do was shove her whole hand in my mouth so I wouldn’t bite off my tongue. (Never, EVER put anything in the mouth of a person having a seizure – it is dangerous for them and for you). For that reason, among many others, she is still one of my closest friends.

I woke up in the hospital and had no clue what had happened. After a brief panic, I realized it must have been from the lightning show! As an avid concert attendee, I was broken up but knew I could survive. Then came countless MRIs, EEGs, sleep studies and doctor’s appointments and we figured out I was suffering from Juvenile Myoclonic Epilepsy (JME), which meant my theory on the lightning show had been wrong.

At that point, I felt like I didn’t have any answers. This diagnosis filled me with equal parts confusion, depression and rage.

At that point, I felt like I didn’t have any answers. This diagnosis filled me with equal parts confusion, depression and rage. With every grand-mal (tonic-clonic) seizure I had, both of my shoulders would dislocate and my entire body would feel as though I had just run a marathon in two minutes. It would take me a few days to bounce back from each seizure and move on.

I continued having seizures until my neurologist found the correct dosage of the right anti-convulsant to stop them. By the time I was headed off to college my seizures were at last under control — perfect timing. I still struggle with absence seizures and myoclonic jerks in the mornings, but other than that I have been seizure free for years.

With that said, epilepsy has posed many roadblocks in my life. At 17, my biggest issue was that I couldn’t drive anymore. I didn’t feel safe riding a bike, swimming, hiking or sailing on my own. Sometimes just walking on the sidewalk I’d fear I’d have a seizure, fall and split my head open. My friends and family were constantly worried about me which bothered me to no end. I hated asking for rides. I hated people asking me if I had taken my meds. I hated the commiseration I was receiving. I felt hopeless and entirely lost. So, naturally, I turned to the internet!

Reading other people’s stories of life with epilepsy and how they were able to navigate the same troubles I was having was integral in what I would call my ‘recovery period’. Joining this conversation gave me a wakeup call. I needed to snap out of it.

I found pages and pages of discussion on forums from other people with epilepsy. Prior to my own diagnosis, all I had known of epilepsy was what I had seen on Grey’s Anatomy. Reading other people’s stories of life with epilepsy and how they were able to navigate the same troubles I was having was integral in what I would call my ‘recovery period’. Joining this conversation gave me a wakeup call. I needed to snap out of it.

After I graduated from URI, I got my first job on a sailboat. I’ve been sailing for the majority of my life. I went to sailing camp as a kid, raced in high school, instructed during the summers, worked maintenance on boats during the school year, spent time sailing in Greece, and sailed on my uncle’s Island Packet with my family around Narragansett bay. My dad and brothers are avid sailors too.

The first sailing job I had was on a 72’ gaff-rigged schooner, Madeleine. We brought passengers out five times a day for a few hours to show off Narragansett Bay and teach visitors about sailing and the great history of the area. I truly could not have asked for a more fun job. I made so many new friends that all share the same passion for sailing that I do. I realized I was finally happy and could see sailing as my future.

Dousing the jib on Madeleine

After the season on Madeleine ended, I did a few longer sails on the east coast. Newport cleared out and everyone was headed south. Unfortunately, due to the countless shoulder dislocations I mentioned previously, I had to stop sailing to get reconstructive surgery on both of my shoulders. It was a long recovery but once I gained back my mobility I got right to work. I sailed another season on Madeleine and started planning my next adventure to New Zealand.

With the 2021 America’s Cup being held in Auckland, it was the perfect destination for a young sailor like myself. I was able to find work right away and had an amazing time sailing in one of the most beautiful places on earth. I met up with my friend from Newport who had been sailing in Australia for Christmas. We decided to meet half way in Hobart, Tasmania. The week after Christmas, sailboats started to come into port after finishing the race from Sydney to Hobart. The first boat to finish, Comanche, ended up being our ride back to Sydney. We were so lucky to sail on one of the fastest boats in the world. It was an unbelievable experience that I will never forget.

After one more delivery from Hobart to Sydney and hearing new information about the impending COVID global pandemic, it was time to head home. Today, I am taking a break from traveling and working at a marina on shore.

It’s sometimes hard to believe that I was once so afraid of doing simple things on my own. I have been able to make a beautiful life, full of adventure for myself, while taking precautions to stay safe living with epilepsy.

As they say – if there’s a will, there’s a way. I’ve found my way to feeling free and at peace. What’s yours?

It’s sometimes hard to believe that I was once so afraid of doing simple things on my own. I have been able to make a beautiful life, full of adventure for myself, while taking precautions to stay safe living with epilepsy.

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