Humiliation and Revelation

Although the most predominating thought that goes through my head these days is a variation of the phrase “I hate MS” (with use of rotating expletives to connote emphasis and avoid repetition), every once in a while my internal monologue is interrupted by a less angry thought: I have amazing friends. To suggest that my appreciation for the people in my life is equal to my hatred for this disease might be an overstatement, but I am certain that without the latter, I would never realize the importance of the former.

I was scheduled to fly to Seattle this past March for my friend Claire’s wedding. Her wedding was in the San Juan Islands, a few hours north of Seattle, so I knew the trip would involve a rental car, navigation between Seattle and the ferry, and negotiation of a hotel that may or may not be accessible. There were a few other obstacles: I had used all of my sick days during January’s stint in the hospital, and would have to take leave without pay for the wedding; I had just received a second treatment of an experimental MS treatment that essentially annihilated my immune system, thus rendering air travel slightly risky; I had zero confidence in my ability to either drive a car without hand controls OR to get successfully from Seattle to the ferry terminal without ending up in Canada; I had a fear of unfamiliar hotels ever since spraining my knee in an accessible hotel bathroom years ago. All told, I really didn’t want to go. Plus my dress didn’t fit anymore, so I would have to trek to the mall prior to the wedding (almost as daunting as the trip itself).

I expressed these fears to several people and the majority – bride included – advised that I cancel my flight. Taylor, however, was in the minority. Even after explaining all of the potential for disaster, he still agreed to be my platonic date/chauffeur, and ultimately convinced me that a trip to Orcas Islands in mid-March was well within the realm of possibility.

I have an astoundingly small number of friends who I feel comfortable asking for help. Taylor was not, at this point, one of them. Friends that I knew pre-MS are fair game; they grew to know and love me before I inherited my burdensome body. Taylor, however, is someone I met several years post-MS through an ex-boyfriend; two details which made him a less-than-ideal person to rely on for a weekend. I started concocting worst case scenarios in my head, all of which led up to a nightmarishly imagined phone call between Taylor and the ex where Taylor would utter the words, “You totally dodged a bullet – she’s a mess.”

Given the circumstances (real and imagined), Taylor must have offered one hell of a convincing argument because two weeks later, with a new dress neatly folded in my suitcase, I flew to Seattle. Less than twelve hours later, Taylor and I were en route to the San Juan Islands in a rented Toyota Camry.

The weekend – by all standards – was an immense success, but until this disease is fully cured, I should never breathe a sigh of relief and claim victory. There remained one last ferry ride between me and a truly drama-free weekend, but given my successful use of an unaccessible bathroom at the reception (where I was drinking), and my ability to get in and out of a tub shower in the dark (the island lost power), a ferry ride seemed like cake. We arrived at the ferry station and Taylor explained my situation to the ticket collector: our car needed to end up near the elevator so that I could access the upper deck of the boat. The ticket collector alerted the deckhands, and Taylor was given explicit instructions to wait for the deckhand’s signal before entering the ferry. Once on the ferry, cars lined up bumper to bumper, side by side and there was hardly room for a normal-sized person to squeeze in between the cars, much less a wheelchair. Naturally, there was a miscommunication between the two deckhands, and when Taylor followed the urgent hand motions of one deckhand, our car ended up at the front of the boat nowhere near the elevator. As soon as we parked, Taylor jumped out to see what – if anything – we could do to remedy the situation. Realizing the improbability of backing the twenty cars behind us off the boat, I immediately capped my water bottle and began to mull over an entirely new and altogether worse worst-case scenario: peeing my pants in front of Taylor.

I forced the thought from my mind. It was only an hour ferry ride back to the mainland, and – as a result of two days of excessive wedding festivities – I was severely dehydrated anyway. While Taylor and I chattered inanely about everything and nothing, I painted a desert landscape into the backdrop of my mind and willed myself not to have to pee. This worked fantastically until forty-five minutes elapsed, and somehow the four sips of water I’d consumed over the past 48 hours managed to fill my entire thimble-sized bladder. At this point I dropped out of conversation entirely, and focused instead on holding it until we arrived in Anacortes. One of the approximately 9.3 million problems with MS though, is that holding it really isn’t an option. I finally forfeited my pride and told Taylor I had to pee.

Taylor, unlike the majority of guys I’ve met in life, was at least slightly forward-thinking, and had anticipated this dilemma and knew that we were close enough to the front of the boat to access the deck hand's bathroom on the lower level. Immediately after my "I have to pee" admission, Taylor walked in to scope it out. He came back to the car and said it was disgusting but doable, so I relaxed a little. He got my chair for me and while I was transferring from the Camry to the chair, said he'd be right back and once again disappeared into the bathroom. Assuming - as most would - that he was using the bathroom, I started to wonder why he (someone who can hold it) would choose this time to go. By the time he emerged, my need to pee immediately usurped my curiosity and the two of us headed into the concrete-floored bathroom cell together. I rolled up to the toilet, preemptively wincing at what was sure to be a urine-stained disaster and was pleasantly surprised that it wasn't as bad as I feared. I unbuttoned my jeans, let Taylor help me stand and pull them off and flopped onto the seat for instant relief. Moments later, hands-washed and back in the car, I remarked that the bathroom was nowhere near as disgusting as I'd feared. Taylor responded nonchalantly:

"Yeah, I cleaned the toilet with paper towels and soap before you used it, but I didn't do the greatest job."


This disease is humiliating, humbling and demoralizing; I have lost even the smallest bit of control over things that I used to take so easily for granted. Without this loss, though, would I ever know that a friendship's true value could be revealed in a filthy, ferry bathroom?