1 posts tagged “Oceans of Hope”

Oceans of Hope: An interview with PatientsLikeMe member Beth

Posted March 1st, 2016 by

Beth (sailebeb) has been living with MS since 2010, but it hasn’t stopped her from leading an active lifestyle. In the spring of 2015, she joined a crew of MS patients on a sailing trip from Tahiti to American Samoa. The journey was organized by the Sailing Sclerosis project, Oceans of Hope, to change perceptions that people with chronic diseases like MS are “trapped by their condition.”

Here, Beth describes her experience onboard and what she learned about herself along the way: “Oceans of Hope is showing me I can still take chances.”

Tell us a little about yourself. What are some of your hobbies and passions?

I like to garden, both flowers and vegetables. Started glass fusing after I got MS. Love to travel. We have had many different types of campers and are also trying to figure out what will be the next best one (for the least money of course). Always have four or five projects, and most of them are 90% done. I also have a 14-year-old son, and that is a hobby and a passion all by itself.

What went through your mind when you were diagnosed with MS in 2010?

Denial. I think that is common. I thought I’d take some medicine for the rest of my life but other than that things would go on just like normal.

Actually I was lucky for a couple of reasons. I have a very large number of lesions on my brain and spine but for the most part they had lousy aim and I didn’t know I had MS until late in life (late 40s).

How did you find out about Sailing Sclerosis: Oceans for Hope?

I was reading the multiple sclerosis forum on PatientsLikeMe and a poster mentioned the Sailing Sclerosis project, the boat Oceans of Hope and the route it was currently taking. That route almost exactly matched the one I had taken in my 20s with my brother on a 38’ sailboat, Sirena, so that piqued my interest.

What was your experience like with Oceans for Hope? Where did you go, and what was it like to sail with other people with MS? 

I roomed with another MS crew for a few nights in Papeete, Tahiti before boarding the boat. We had all made contact via the Internet well before the trip, and had arranged to meet, rent a car and tour the island together. It was a good way for the six of us (three Americans; three Danes) to make first contact.

We were also able to met two people from the MS4 crew (people leaving the boat), and have dinner with them. They had done a longer Pacific crossing so it was very interesting! Gave us some good pointers and told us what berths to avoid. Unfortunately, I got one of those berths!

After a few days of provisioning and safety lectures, we took an overnight sail to the island of Moorea and anchored out for a few days. The professional crew introduced the MS crew to the finer points of “jumping off a moving boom.” I didn’t partake! (I’d have jumped off the boom…it was getting UP ON the boom that was the problem!)

Then a multi-day sail to Bora Bora which is as beautiful as everyone says. The locals were even more lovely and the folks at The Black Pearl Farm, where we were anchored, took amazing care of us. We even dove for pearls! The last leg was an 11-day leg to Pago Pago in American Samoa.

The great thing of traveling with other folk that have MS and with people that are now so used to being with people with MS was that the MS wasn’t hidden, wasn’t shameful…it really didn’t matter. People talked about it at times, comparing experiences, drugs, etc. but not dwelling on it to an unhealthy extent.

The best thing about this trip was easily the people I met and the camaraderie.

What’s one thing you learned about yourself on your journey from Tahiti to Samoa has spread?

The second thought that went through my mind after I got done denying my MS was, “Boy, I sure am glad I traveled and took those chances when I was younger, because I’m not going to be able to do anything else, now am I?”

Well I am still glad I took those chances back then, but Oceans of Hope is showing me I can still can take chances like that now.

What has your experience been with PatientsLikeMe? What keeps you coming back to the site?

I found out about sailing sclerosis on the site, for that I will always be grateful. I come back when I need to research a topic, ask a question or just find out what some fellow MSers are thinking.

 

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