The Unseen Depths: My Real Cruise Experience with MS 

When my supervisor asked me how I felt about my upcoming vacation time, I’m sure she was expecting big smiles and an enthusiastic response. Instead, tears welled up in my eyes, and I found myself speechless. The mental checklist in my head immediately popped up, and all the unknowns suddenly caused more stress than I’d anticipated. 

Lots of opinions were shared when I discussed my plans for a family cruise. ‘Oh! That will be perfect!’ or ‘Cruises are used to wheelchairs, that shouldn’t be a problem.’ For some reason, these assurances did little to ease my worry about navigating travel with the children. 

My husband, the ultimate fixer in my life, kept saying, “don’t worry! We will figure it out,” for any concern I shared. I was still unsure how. One thing that we had in our favor, that I am forever grateful for, was that my mother-in-law had arranged and paid for the whole trip. A lot of the time when we went places, I felt a lot of pressure to plan and create a good time for the girls.  

For this trip, before we left, I was worried that my limitations would affect the girls, and what they were able or not able to do.  

Even before MS, I was not a light packer. I was the person that seemed to have all of the things others forgot or needed to borrow. It was kind of nice to be that, but for this trip, I had no idea what to remember to bring! We had my medications, which was a lot… but not even the most of our family. All of us had a lot to bring and organize.  

I was reminded of the “TSA white powder incident” of 2023. Our last family flight my husband brought sodium citrate in a mason jar labeled with a sharpie and masking tape so we could make the best mac and cheese. It is very good, and if you haven’t tried it, sodium citrate (also found in American cheese) does keep the mac and cheese from clumping…  

Anyway, unsurprisingly, TSA did not like that he had a mysterious white substance in a glass jar and took him into what we call now “security jail.” Both girls were confused and upset that he was pulled away, which also makes sense. Maddy, about 7 at the time, was crying and saying she did not want Daddy to go to jail.  

I had no idea at the time what he could’ve done that would land him there, but I tried to reassure her that he would be fine. It’s funny now, and we joked about it when we were packing things for this trip. I decided it might be best to bring all medications in their original containers and organize them when we got to our destination to avoid the potential jail stay. 

Turned out, my husband scheduled our security time, and because I had a wheelchair, security was quick, easy, and mostly painless. Lauryn’s weighted stuffed animal was the only thing that was flagged and needed to be looked at.  I’m a little bummed I didn’t get to see it in the machine, because I bet it looked cool! 

As we went, I learned, or I was reminded, that everything we did felt so much harder than I was expecting. Luckily, the girls were older now, and more able to handle things for themselves… for the most part. Maddy lost her water bottle and strawberry carrying case in the process, because she forgot to dump it out.  

I still count it as a win. ultimately, we all stayed out of jail.  

During the whole trip, I noticed my usual checking to see everyone, and everything, was prepared and handled was much harder from a wheelchair. I noticed feeling both proud of my family that they were able to manage to take care of their own things, and also a little guilty that I couldn’t provide my role as a parent. Truthfully, both parents were busy this trip. Jared was taking care of me and pushing my wheelchair like I was an Indy car, so their girls were on their own for the most part.  

On the first day, when we woke up in Miami, I was so tired I didn’t feel like I could go swimming with them. In fact, I didn’t even feel like I could hold my head up, so I stayed in the room and slept while they went to the pool with Nana and Jared. My fear of the family not being able to have fun because of me was almost instantly challenged.  

What I found was, they didn’t need me there to have fun. It was okay that I was sleeping, and it was more FOMO than anything else. Before I left, when I talked about worrying that I would be limiting others’ fun by needing to rest, my therapist asked me, “what’s the goal of this trip?” At the time, I was a little confused.  

Now, I think I understand what he was getting at. I needed a break from the craziness that life has been for the last year. Being able to rest, take a nap, and not being expected to fix things for anyone else was exactly what I needed. 

I am glad that I had that extra relaxation time, because I did not anticipate some of the challenges the cruise would bring.  

There’s a lot of people on a cruise ship, like, A LOT of people. Usually, that is not something that phases me, or a concern at all. The one place that it seemed to be the biggest challenge was the elevators. They were different than elevators I had seen in the past. There were not numbers on the inside… instead, they would just tell you which elevator would take you to your destination. The only problem was that we had 6 people in our party, plus with the chair I took up like 3 spots.  

Since last July, I had been getting accustomed to things taking a lot longer than expected, so that wasn’t a problem. Although, I wasn’t sure others around me felt as comfortable with this. I’m lucky, and they never had a bad word to say to me about it, but I noticed myself feeling guilty about the delay to the fun.  

This really came into play when we literally missed the excursion that Mama K had already paid for. Turns out, there is a specific way that you must leave the boat with a wheelchair. I even told them I could walk, and asked to be let in the “normal way.” That was a big no go. We had to go from one side of the boat to another, and by that time, we missed our check in to the tour of the island.  

Yet again, here I was, feeling terrible about everyone missing out because of me. Mama K was upset. I could feel it. She wasn’t upset with me, though. She kept telling me it wasn’t my fault. She was upset with everyone but the family she was there with.  The cruise ship staff for not being more direct about where we should go to exit with a wheelchair, the tour people for not having another time for us to go, and all of the people she talked to in an effort to correct our experience that seemed to have no compassion for us.  

One of the things she was upset about, which I was trying desperately not to let show how much it was affecting me, was the heat. I have been told that heat can exacerbate my MS symptoms, and even experienced it, but not like this. Tropical island heat, direct sun, and someone I love being upset about the current circumstances… it all added up pretty quickly.  

Eventually, we just went back to the boat. There was enough to do there, and everyone could have what they needed. The pool we went to ended up being one of the best things we could have done. It rains a lot in the Bahamas… I know… surprise, and when the rain came, the pool had an ability to cover the top. 

 The next day, when we had already planned excursions on the island, again, we chose to stay in. It was nice to feel that it wasn’t just my fault. Everyone had said how hot it was, and how they wanted to stay on the boat. I’m not sure if that was genuinely how they felt, or if they just wanted to make me feel better, but it did the trick.  

The pool was so salty. Maddy said she tasted it, and can confirm that it was extremely salty. This was great news for me. Extra buoyancy. It was maybe the first time on this vacation that I felt “normal.” My body floats even in not salted water, so this was like a dream. Getting in an out and having to walk to the pool was not ideal, but once I was in, things were great! 

On our way home, navigating in the Miami airport, I was thankful that we had DIA first. When we landed in Miami, we told the girls to wait for their shopping until we had seen Miami and assured them, we could get it on the way home.  

Well… the concourse we were on for our departure was not nearly as nice. There was one restaurant, if you can call it that. The waitress was not kind to others around her, and very not interested in accommodating anyone’s needs. The food they served were from the other spots next door, and did not include sides.  

I learned why “those that need extra time,” get to board the plane first. On the way home, we were not allowed this privilege. The irony was that we were about 3 hours early to our flight, and still did not get time to get on the flight early.  

By the time we were allowed to get on, it was like a mad dash to the doors. I was in everyone’s way… just very slowly. All of the flight attendants and my husband reminded me to take my time. I was so tired, I’m not sure I could do anything else.  

This entire cruise became a living illustration of Jewel and Ash. The ‘ash’ was in the relentless fatigue, the frustrating accessibility barriers, the guilt of missed excursions, and the constant effort to simply move. But the ‘jewels’ shone brightly: the unexpected freedom in that salty pool, the fierce advocacy of Mama K, the patient strength of my husband pushing my chair, and my daughters who embraced their independence.  

This wasn’t the vacation the brochures promised; it was something far more meaningful. It was a journey of embracing every shade of my reality, of dancing through the fire of physical limitations, and finding immense gratitude for the light that comes from true connection. As a family we experienced the underbelly of the ship – a sight not as glorious as what’s advertised to the rest of the passengers.  

As a family, we got to experience the path beyond the brochure’s perfection – seeing even the underbelly of the ship, a sight not as glorious as what’s advertised, yet part of our unique journey. I feel deeply privileged to have experienced a multitude of jewels, along with overcoming the moments of ash, and I wouldn’t change a thing.