Finding Awe and Inspiration from HAL’s Cruise and Travel Director Clare Adams

One of my favorite things about traveling is the ability to connect and learn about people/things that you would never have had the opportunity to if you hadn’t ventured out. So many people have such fascinating life stories and histories. And then there are those people who are so extraordinary that they serve as reminders on how life should be more than surviving. I don’t want to ignore or shy away from acknowledging that there are times, and for far too many, that they can only concentrate on surviving but for those of us that have the choice or chance, we should take make the most out of our opportunity to do so.

I have just written about how much I was pleasantly surprised by Holland America and all of the ways that they are different that the other mainstream cruise lines (find the full read here) and I am wondering how much it was due to Clare as she was the Cruise and Travel Director aboard the Nieuw Statendam for my Nordics cruise. I was already so impressed by her professionally but then became blown away by her personally.

I hope that you not only find her story not only as moving as I did but also inspiring – and use it as motivation to find ways to thrive in your own life – sometimes in spite of our circumstances.

She was so prepared and well-informed for the port overviews and Q&As that she hosted. They were so well done as she gave such great and useful information but there were a lot of little things she did like nailing difficult to pronounce names of the ports to highlighting many different activities/things to do to appeal to a large range of people. There’s so much thought and work that goes into crafting well built presentations (and itineraries) and making things look easy when they’re in fact difficult to do.

Plus she was warm and engaging as I saw her around the ship and greeting people as we went ashore to explore on port days.

There was a morning series that she hosted titled: Coffee with Clare in which she would have the captain or executive chef with her and they would talk about their position and also their journey to getting to the job.

I had only been able to catch little bits of the other coffee chats but I am really happy that I had been able to attend this particular coffee chat as she delved into her personal story and what a remarkable one it is…

To say that people were surprised or shocked even would be an understatement as many in the audience audibly gasped or made comments as she disclosed that she (and her nieces pictured here) were born with this condition: EB.

Epidermolysis Bullosa—commonly referred to as EB—is a rare, genetic skin disorder that causes the skin to be extremely fragile. In fact, even light friction or a gentle touch can cause painful blisters, open wounds, or skin tearing. This condition has earned the nickname “butterfly skin” because of the skin’s delicate nature—comparable to the fragile wings of a butterfly.

She talked about what EB looks like for them – from having fragile skin that blisters easily (especially on hands, feet) with sensitivity to friction, even from clothing or minor movement. How walking was difficult due to her skin tearing but how her mom instilled in her an attitude of figuring out how to do things in spite of EB rather than why she couldn’t do things because of EB.

Clare talked about when she was a child and her mom took her to an Irish dancing class. How the friction with her shoes caused her feet and legs to bleed which other parents had noticed and commented on. But how even having to peel off those bloody stockings didn’t deter her from wanting to come back again to class the next week. Because she was able to feel and be normal during that time – people weren’t looking at the sores on her face or her body, they were watching her dance.

And from there, she ended up doing shows in London’s West End while she was still in secondary school. She would attend practices and perform after finishing up the school day and take the train back and forth from London. And I should mention now that there is no cure for EB, she talked about how there were times that she would need to phone her mom and have her help walk her home from the train station as her feet and legs were so raw from performing that walking home unassisted was impossible.

But she preserved and continued on with performing as evidenced by the shows she was in as shown on this screen in the above photo.

And this also led to being a performer in shows aboard Holland America ships and eventually to her position now. And continues to be affected by EB – some days more than others. And like all others on the ship, she works 7 days a week – EVERY.SINGLE.DAY of her contract whilst dealing with itinerary changes and other issues on a professional level (and the angry, angry passengers aboard) and this on a personal level.

In some ways, it is unfathomable to me how she is able to carry on at all. Pain can be a b* as many of us know. But chronic pain is an entirely different beast and the physical as well as emotional/mental/psychological aspects can often feel overwhelming. And yet not only does she carry on but she does so with grace and compassion and passion. It is a marvel and a privilege to behold.

Life is not a matter of what happens to you but how you respond – sometimes or many times that is the only choice we have in the matter.

And I want to end on this note: she shared her story to help spread awareness about EB. Though EB is rare (affecting roughly 1 in 20,000 births worldwide), its impact is profound. The disorder can affect every part of a person’s life—from basic movement to nutrition to emotional well-being. And that’s the other reason why I share her story – the more that people can hear about this and the more that we can draw attention to EB comes with the hope that advances in treatments and knowledge can help all those with EB thrive.