What we Brought Home From Mayo
Too Long; Didn’t Read: The trip to Mayo Clinic was well worth it, even just for the second opinion confirming that I do, in fact, have MS. The doctors and facilities were wonderful. It wasn’t life-changing for me in the way Mayo clearly is for so many people, but I’m very glad we went.
I mentioned wanting to write about this trip in The Backlog Is Dead, Long Live the Backlog. Apparently, declaring the backlog dead did not relieve me of responsibility for anything in it. An unfortunate technicality.
The difficulty has been figuring out what kind of story this is. We traveled to a place known for finding answers, and we came home with a more confident version of an answer I already had. That mattered. It also left much of the daily reality exactly where it had been.
Meanwhile, everything around the appointment kept asking for its own paragraphs: Christa, our family, the speed with which people made the trip possible, the people we met there, and the strange experience of watching so much effort gather around my life while I had very little effort left to contribute.
So, first, the medical part. Briefly. Nobody needs this essay to become a textbook with occasional complaints about my legs.
Part One: the Medical Version
Multiple sclerosis is a disease in which the immune system attacks myelin, the protective covering around nerve fibers in the central nervous system. The damage interferes with signals and can damage the underlying nerve fibers too. Where that happens helps determine what goes wrong: vision, movement, sensation, and a considerable assortment of other things I would have preferred to learn about abstractly.
The central nervous system is the brain and spinal cord. The peripheral nervous system is the network of nerves connecting that central system with the rest of the body. MS affects the central system. A separate problem with peripheral nerves would raise different questions and potentially call for different treatment.
That distinction matters because the question leading up to Mayo was whether MS explained everything happening to me, whether something else was happening alongside it, or whether the diagnosis itself needed another look.
My presentation has been somewhat atypical.
My vision was probably affected first. I wrote about those early problems in Understanding Pain, Part 1: Before It Had a Name, including the experience of trying to read my own writing aloud in graduate school and finding that I couldn’t reliably see the words. Looking back, there were signs long before we understood what they were signs of.
Vision problems are common in MS. What puzzled my doctors was the particular way mine progressed, including how aggressive the deterioration became.
There is nystagmus, the involuntary movement of my eyes, and the associated oscillopsia, which makes a stationary world appear ewto move. There are visual field defects: areas where information is missing. I sometimes compare those gaps to the missing areas people associate with macular degeneration, though thankfully less severe in my case. That is a comparison of the experience, not the diagnosis. My nearsightedness has also worsened severely. Taken together, these changes have left me legally blind.
When I ask my neuro-ophthalmologist to put a number on what I can see, he more or less shrugs. The figure on the paperwork is 20/600, but at this point even that feels like an approximation trying to look official.
His shrug isn’t coy or dismissive. He isn’t withholding some beautifully precise answer. It is an acknowledgment that a single number can only do so much with what my vision has become.
I can still see. It is just very different now.
When people ask what that means, I usually say some version of, “I can see you there, but I can’t make out your face.” I also mention the ordinary blind-spot demonstration, where you cover one eye and move a page until a mark disappears. If you haven’t tried it, look it up. It won’t reproduce my vision, but it offers a small point of reference for how something can be in front of you without being available to you.
Because of the unusual progression, I had already undergone genetic testing for Leber’s hereditary optic neuropathy. That was negative. I had also had whole exome sequencing, which examines the protein-coding portions of our DNA. That didn’t produce an explanation either.
Disappointing, yes. Still, I got to have my exome sequenced. I can be frustrated with the results and impressed that I live in a time when that sentence describes something doctors can actually do.
Then there was the spasticity: the stiffness and involuntary tightening that make movement so difficult. Spasticity can certainly come from MS. In my case, though, it was part of a broader picture that made my neurologists wonder whether an additional problem, possibly involving my peripheral nerves, might be contributing.
Those questions were already in motion when we went to Mayo.
They did more MRIs. I liked their machine, which was snugger than others I’ve been in. Apparently, I have reached the stage of life where I have preferences about MRI accommodations. Somewhere along the way, this became a category of personal experience.
I have already documented some of my considerable expertise in The MRI Is Wherever You Aren’t, although the expertise in that case mostly concerned being confidently wrong about where to go.
At Mayo, I saw a neurologist who specializes in atypical cases of MS. My fourth or fifth neurologist, I think, depending on how we are counting. He was fabulous, and he was quite confident that I did, in fact, have MS.
That was worth the trip by itself. Having someone whose work includes the unusual cases look at mine and recognize it helped settle a question that had become exhausting to keep open.
He also thought there might be something additional going on, so he sent me to another doctor for an EMG study. The needle portion records electrical activity inside muscles; the nerve-conduction portion uses small electrical pulses to check how signals travel. Between them, they can help identify certain problems with nerves and muscles.
From the patient’s side, there are needles and electricity. I understand why that description might suggest a horror movie.
It didn’t bother me in the least. Doctors and nurses have been taking blood from me or fluid from around my spine for about a decade. I take a weird amount of pride in how ordinary this has become. Another interesting test. Another thing my body has participated in without consulting the rest of my plans.
They didn’t find an additional problem.
Good news, in the obvious sense. Also disappointing, because finding something else might have given them something else to treat. That is an awkward place to occupy: relieved that a test hasn’t uncovered another condition, while wishing it had uncovered another possibility.
I didn’t want more illness. I wanted more options.
Part Two: Before any of That Could Happen
I should back up, because the medical account leaves out most of what made the trip possible.
First, my doctors at home are at WashU. I was already receiving care at a world-class medical institution. This was a true second opinion, sought because there were reasonable questions to ask. I wasn’t expecting a miracle waiting just beyond the Minnesota state line.
Second, and far more important to this story, I had been getting extremely depressed before the trip.
The physical problems were already difficult enough. The uncertainty added another demand: after years of living with a diagnosis, I was being asked to consider whether it was the whole explanation, or even the right one. There can be hope in that question. There can also be a profound weariness in having to begin explaining yourself again.
Christa and my family jumped into action.
My sister-in-law somehow found exactly where to call. Christa, whose work was already exceptionally busy, seemed to drop everything to get on the phone and speak for me. I have written about that trust in She Can Speak for Me. Here it became part of getting me to another doctor: she could explain what was happening and help move the conversation toward something we could actually do.
Together, they formed a plan. Somehow, I had an appointment two weeks away.
Then everyone started making that appointment possible.
Some provided financial help. Others booked flights. People figured out who would watch Charlotte and Rowan while we were gone. There was a hotel to find, a rental car to arrange, and all the other small decisions that disappear into the phrase “we went to Mayo,” as though going were one action.
I could mostly watch it happen.
That is still difficult to write without feeling the size of it. I was the reason for this enormous rearrangement, and I was doing so little of the rearranging. People had their own work, their own children, their own obligations. They made room anyway.
All of it for me. All of it because they love me.
I have written about the difficulty of answering that kind of care in The Thank You That Keeps Moving. I even added a note there about the help gathering around the Mayo trip. Looking back now, I can see the completed version of what was still coming together when I wrote it: the calls became an appointment, the bookings became a trip, and the offers of help became enough support for us to leave home.
The stars seemed to align. But, when I look closely at the alignment, there are an awful lot of people making phone calls.
It also belongs beside Her Yes Keeps Saving Me. Christa has spent years making good on a promise neither of us could fully understand when she made it. This trip was another instance of that, with her sister and our wider family helping carry what it required.
I don’t want gratitude to make their effort look effortless. It took time, money, attention, and work. Their lives did not conveniently pause because mine needed help.
I know how fortunate I am to have them. I also know I will keep trying to say that adequately and keep falling a little short.
Part Three: Rochester, With a Baby
You may have noticed that Wyatt was absent from the childcare arrangements.
That is because he came with us.
Christa, her sister, Wyatt, and I flew to Minneapolis and then drove to Rochester. Christa’s sister is a nurse, so we had expertise, support, the patient, and a baby. A reasonably comprehensive traveling party.
Once we finally arrived, we settled in and breathed a little. After all the calls and decisions and arrangements, we had made it. For a moment, that was enough to take in.
Mayo itself is an extraordinary place. The buildings are connected by tunnels, but “tunnels” makes them sound much less inviting than they are. There are shops and restaurants, people playing piano for passersby, and a whole connected environment around the work of being there.
I hadn’t quite expected that. Medical travel is so thoroughly organized around appointments that it is easy to forget the time between them. You still have to get from one place to another. You still need to eat. You still have stretches of time in which you are a person visiting a city with your family, even if the reason for the visit is sitting heavily in the background.
And, everyone who worked there was wildly nice.
The people opening doors. The people at reception desks. The doctors. Everyone we encountered seemed ready to help. Whatever they are doing in training, something is working.
That kindness mattered even when it had nothing to do with the medical answer. Being tired and uncertain is easier in a place where the next interaction is likely to be a helpful one. A person opening a door cannot settle a neurological question, but they can make that particular minute easier. There were a lot of easier minutes.
I also need to discuss the food.
Rochester, Minnesota, may not be the first place people name when discussing food cities. After this trip, I am prepared to hear its case.
There was a Turkish restaurant where we ordered the Brussels sprouts twice. We ate them, considered the situation, and concluded that the appropriate next step was more Brussels sprouts.
We said we would go back just for them. If you think you dislike that tiny vegetable, these might deserve a hearing. I don’t understand what happened. I can’t explain it. I went to Minnesota seeking answers about my nervous system and acquired a separate, unresolved question about dinner.
Back Home
After we returned, I had one more video visit with a Mayo geneticist to work through a few questions. One was whether I should have my whole genome sequenced, going beyond the protein-coding regions examined by the exome test.
For me, the answer was: not yet. Perhaps in the future.
I remain optimistic about personalized medicine, especially for people whose cases don’t fit neatly. There is still a great deal to learn, both about what our genetic information contains and about what doctors can usefully do with it. I find that possibility encouraging without needing it to become a promise about my own next appointment.
Now, a few months later, I am grateful we went.
I came home with more confidence in the diagnosis. I came home having been evaluated by excellent doctors who took the unusual parts seriously. I also came home with the same limitations, and without the additional treatment possibility I had hoped might emerge.
The disappointment belongs in the account. The value of having gone belongs there too. I don’t need to exaggerate either one to make the trip worth remembering.
What I keep returning to is how many people helped me reach that appointment. When I was depressed and worn down, they found a number, made a call, booked a flight, watched my children, helped with the cost, and traveled beside me. Whatever the doctors found, that had already happened. Their care wasn’t contingent on our coming home with a breakthrough.
I still wish the medical part had offered more. I am still glad we went. I am grateful to the doctors, to the people who made the place so welcoming, and to everyone who made getting there possible.
Also, those Brussels sprouts.
Definitely worth it
We made it all the way
I’d recommend it
