No Rest From MS in a Rest Area Restroom
“So it starts on Mark’s birthday. Are you coming with me?” That was the first sentence to come out of Dan’s mouth after nearly 15 minutes of uncomfortable silence. Uncomfortable silence because it was proceeded by an angry, expletive-filled outburst from both my husband and me after an “exciting” stop at a rest area.
Until that sentence, I was staring at the west Michigan scenery as we drove along the interstate thinking to myself, “Did that really just happen? No, but seriously! Did that just happen?”
High hopes for an easy car ride
Dan and I were making a short drive to Indiana to meet up with family and celebrate his brother, Mark’s, birthday. After our nearly 10-hour each-way drive to Iowa for the recent Fourth of July holiday, we felt confident this trip would be a piece of cake.
Not even two hours into the trip to Indiana, I needed to use the restroom. It was quite hot outside, but a quick stop would probably be good for us both. Dan would stretch his legs, and my bladder and I would feel a lot more comfortable as we headed towards the Hoosier State.
Making the restroom work for us
Learning from our recent Iowa trip, we felt pretty smart and well-prepared as Dan carried my bedside commode into the private family restroom. The commode chair gives me height and raises the toilet seat about two inches, which theoretically, would make transfers easier and more stable for Dan and me.
By chance, have I ever told you that Dan also is living with multiple sclerosis? And we all know, heat and MS do not mix. Especially 80° heat in a rest area with no air conditioning and almost no air circulating. Stifling and suffocating is an understatement. But I had to go and he had to transfer me. So we used to the bedside commode, but almost instantly Dan started to sweat.
Gotta love a mad bladder
Better make it quick, I thought to myself. But my pesky neurogenic bladder reared its ugly head, and I wasn’t able to go. Not being one to give up, I waited and kept trying to persuade my bladder to relax and let it go. (Yes, intentional and ironic lyric choice from Disney's Frozen film.) And Dan patiently waited with me and continued to sweat.
After a few more minutes, Dan was red-faced and drenched, so I called it off, declaring that, “We will just have to use the next rest area.” Ooh, but only if it were that simple. Now Dan was soaked and weak. Lifting me off the commode chair was not as easy as we planned. Plus, we still had three hours of driving in front of us. What were we going to do?
Putting pride to the side
I felt so small and yet so big at the same time. Small because I cannot use the bathroom by myself, but big because, well, I am big. Physically—both weight and height. Who were we going to ask for help? I was most worried about having to call the paramedics.
I imagined his conversation being, “Um, my wife is stuck in a rest area bathroom. Can you help me?” Yes, I was panicking but trying hard to stay calm. Think, Jennifer, think. Help Dan. Put away your pride. “Well, you are just going to ask someone for help,” I said to Dan. “Just find someone.”
Hello stranger, can you help?
I was slightly irrational and unrealistic, and absolutely okay with Dan asking some complete stranger to help him pull up his wife’s pants. Yep, a person I had never met before would help get my pants up, and put my clothed behind back in my wheelchair. And that is exactly what he did.
Dan surveyed the rest area, after realizing the young male attendant working would be no help to him, he spotted a young couple. Dan was hopeful they would be willing to help. Surprisingly, they were. Actually, the husband offered to help.
Could this be our new reality?
With that willingness, Dan and this stranger came into the bathroom. This man kept trying to reassure me I had nothing to be embarrassed about. He just wanted to help. Which he did. Simply pulled up my pants and directed my butt into the chair. He wouldn’t accept any money for his help. Such kindness from a stranger.
And such an experience. Ugh. What can I say? Not only was I thinking, “Did that just happen to me? To us?” I wondered how we are going to proceed so that never happens again? And how can we ever take another road trip without worrying about history repeating itself? Not to oversimplify, but is this our life with MS? Our new reality?
Moving forward, together.
I hope not, but there is no guarantee. I suppose after living with the disease for 20+ years, we should have known that. But it is a moment like this that really made us think. Do we really have this under control? Or was this an isolated incident? How are we going to move forward?
I am not sure how, but we have to do better. The usual: better diet, more exercise, more sleep. After that exciting rest area stop, I am not positive how exactly Dan and I will do better, but I know one thing for sure. I am going there with him.
How do you feel before getting an MRI done?