Nervous Systems

I sing the body electric.

—Whitman

While you religiously schedule regular checkups—medical, dental, car, etc.—you’re awful about going to the doctor for unscheduled breakdowns. You tend to save up lots of little problems and take the whole rag-and-bone shop in at the same time. Last May, right after classes ended, it was a wart on your finger, worsening plantar fasciitis, and an odd numb sensation you’d developed on the left side of your face.

Your doctor handily freezes the wart with a magical hiss of liquid nitrogen and arranges a shot of cortisone for your foot. But she says, “I don’t like the facial numbness. I want you to see a neurologist.” You don’t think too much about it because you’re freaking out about a needle being inserted in your heel, but it ends up being not that bad. You walk tenderly to the front desk and make another appointment. You go home, where your son pats you on the face and you barely feel it.

A neurological assessment is a bit like a DUI checkpoint—lights shining in your eyes while you touch your nose and balance and walk imaginary tightropes—except you also get poked with pins. Except the pins you’re poked with feel dull, like ballpoint pens. In your Southern accent, “pins” and “pens” sound the same. In the southern part of your face, pins and pens feel the same. He also asks about your migraines, your mother’s neuropathies, your grandfather’s Lewy-Body. He says, “I don’t like the facial numbness. I want you to get some tests.”

You have some blood drawn, a chest x-ray and, a week later, go for an MRI. You haven’t worn any metal—even your sports bra is underwireless. But you notice on the release form that they ask about tattoos. You don’t want the magnets to make your cool new black-inked Bettie Page bubble and burst. The tech says they’ll only be scanning your head, so your tattoos will be fine. He asks if you’re claustrophobic, if you need a Valium. You say no, you’ve had an MRI before, after a car accident. It’s loud but boring, and your legs are cold. Then, the tech injects you with radioactive ink, which is a little less boring until it’s boring again. Then you go home and wait. You’re sure it’s a tumor.

A couple weeks later, the neurologist tells you that it’s not a brain tumor. He says there were some small spots on the brain MRI—inconclusive—and mixed results on the blood tests—also inconclusive. He wants to do a spinal tap to check for a viral or bacterial attack, but can’t schedule it until after the Fourth of July, so you spend the long holiday weekend unable to enjoy the lake or the fireworks or your son dancing along the edge of the small-town parade that has more participants than audience because you’re freaking out about a needle being inserted in your spine. It ends up being not that bad. The neurologist tells you the fluid appears clear, but he’ll have the results in a few days—try to stay horizontal for the rest of the day. And you do, though your son keeps pulling up at the side of your bed where you’re supposed to remain horizontal, and wonders why you can’t pick him up for a week.

A week later, on the anniversary of your son’s adoption, you text his birth mother, with whom you try to maintain communication:

One year since our adoption became official.

Thank you for making that possible.

My pleasure ☺

I wanted to let you guys know that my doctor thinks I have multiple sclerosis. I’m going in for an MRI sometime next week so they can see if I have lesions on my brain.

Thanks for telling us. Keep us posted. I’ll let our doctor know.

I’m going through something like that too. Kinda scary.

I sure will.
It is very scary. For 3 weeks now I feel almost retarded.

Really? Mine’s a partially numb face.
My MRI wasn’t very helpful, so more tests.
Here’s hoping for answers, and for treatment, for both of us.

No doubt!

At the follow-up, the neurologist says that, having ruled out all the common mimics—sarcoidosis, Lyme disease, Vitamin B deficiency—he thinks it may be multiple sclerosis. He lays out the options: a wait-and-see approach with repeated MRIs each year, begin a lifetime of self-administered expensive shots to delay progression and deterioration, or get a second opinion at the MS Clinic in Fargo. You get the sense that he wants you to ask for a second opinion, but you can’t tell for sure, and he won’t tell you what you should do. You want to defer to the doctor; he wants to defer to you. Clearly, you aren’t communicating clearly. You say you want to think about it, discuss it with your family.

Your perception of MS is limited to Annette Funicello, who just died of the disease, and President Jeb Bartlett on The West Wing, whose symptoms make for dramatic plot points in his fictional second campaign, second term. Ever the academic, you turn to online research, which is always the best way to calm your fears.

You find that MS is an inflammatory disease in which the immune system attacks myelin—the insulating sheath of nerve fibers in the brain and spinal cord—damaging it and causing scar tissue (sclerosis) to form. This damage disrupts the ability of parts of the nervous system to communicate—nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms: blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness, and more. MS takes several forms, with new symptoms either occurring in isolated attacks (relapsing forms) or building up over time (progressive forms). Between attacks, symptoms may disappear completely; however, permanent neurological problems often occur, especially as the disease advances. With treatment, most patients experience mild attacks and are relatively unaffected except for minor adaptations, with the average time to disease progression being twenty years from diagnosis. (Annette Funicello died almost twenty years to the day from her diagnosis.)

It’s been a couple of months since the start of this trail of tests, and the insurance statements and bills have started to appear in the mail. You spend hours on the phone with the university’s HR department, with the North Dakota Public Employees’ benefits program, and with Blue Cross/Blue Shield, trying to figure out coverage, options, and what your future needs and expenses might be if you do have MS and need injections. You’ve blown through your individual deductible quickly, which is kinda cool, but you still have to pay copayments for each appointment, and a coinsurance percentage of all procedures. And you can’t get a definitive answer on how much of the shots would be covered, which is a major concern: depending on how often you inject they can cost up to $65,000 per year, and for now the major pharmaceutical producer has staved off the release of a generic drug, which drives up the price.

It’s expensive, and it’s making you worry, which for you is a constant state that just attaches itself to different things. You call yourself a realist. Not a pessimist. Just planning for the worst-case scenario. Already established as a professor when you married Evan, you’ve always been the family’s main earner, but now as Evan prepares to enter law school, you will be the sole breadwinner for at least the next three years. You talk about this with him often, the stress makes you melodramatic, you make him promise to finish law school no matter what, in case he needs to be the sole income. You plan for the ugly stuff.

Though your son, Wyatt, is growing heavy and can walk on his own, you pick up and carry him around whenever he asks, even when he doesn’t ask, because how long will you be able to?

And for now, you’re able to carry him, able to carry your family, able to pay. Easily. But it makes you fantasize about Medicaid paying for everything. Until in your online research you find FAQs about Medicaid’s handling of MS treatment and realize that paying is a privilege, that scheduling Medicaid appointments and submitting for coverage is a full-time job in itself, one that many patients who are hourly employees can ill afford, either in time or money. Minimum-wage employees like Wyatt’s birth mother Kinzey, whom you need to call:

How is your testing going? Have your doctors given you any answers?

I’m trying to decide whether to do the MS shots.

A couple weeks go by—communication with Kinzey is often spotty. Then, your phone sparks:

Hey it’s Kinzey. I just got a new number! The doctors think I have primary progressive.... Not sure how I’m supposed to take it because it’s really confusing to me. I can’t take care of Elly [her daughter], so she’s with my sister in Arizona. I used to call Elly every day and now it slips my mind until late at night most days. I even forgot for a week I had a daughter until someone asked me how’s Elly and I said who’s Elly?

I’m so sorry. For all of it—the MS, Elly. Keep us posted.
We love you. Wyatt is doing so great—he loves his preschool
& is such a lovey little guy. Right now, his favorite things
are tacos, the garden sprinkler, & singing Itsy Bitsy Spider.

That is soooo awesome to hear!

Terrified by the thought of forgetting about Wyatt, you decide to discuss your case with the MS specialist in Fargo. Also, you want to know as much about the disease as possible so you can forge the way—in your online reading, you find it might be hereditary, though less so for sons. Kinzey has it. You may have it. Does our son have it? He’s had early issues with eczema and bad allergies, which can be indicators of a sensitive immune system. You suddenly realize that you would have to worry about this regardless of who his mother is.

Ever the writer, the poet, the trivialist, you find yourself drawn to the less-useful information about MS. For instance, a young woman called Halldora who lived in Iceland around 1200 suddenly lost her vision and mobility but, after praying to the saints, recovered them seven days later. Saint Lidwina of Schiedam (1380-1433), a Dutch nun, may be one of the first clearly identifiable people with MS. From the age of 16 until her death at 53, she had intermittent pain, weakness of the legs, and vision loss—symptoms typical of MS. Both cases have led to the proposal of a “Viking gene” hypothesis for the dissemination of the disease, linked to vitamin D deficiency—a lack of sunlight in climes like Northern Europe, or here in the Upper Midwest with its Scandinavian settler roots and Vikings football fans.

Fears of forgetting and of heritage drive you to drive across the north of the north to Fargo for a second opinion. The woman who runs the MS clinic is a great listener, reviews your tests in depth, and does her own neurological exam, which includes extensive measuring of how signals are communicated, firing along the thin tinder of your limbs. Some of these include sticking electrodes to your skin and jolting you with a needle or taser-like tool which, while not painful, is unpleasant. But your favorite is her testing of your extremities, where she strikes a tuning fork, sets it to your foot or hand, and you’re supposed to tell her when the vibrations stop. You’re so charmed by the concept—the body electric actually singing!—that you forget to note its ceasing. She expresses concern that you exhibit some damage or deadened nerve communication, but also is perplexed that while you exhibit a range of diffuse deteriorations, none are significant, and while your brain contains lesions, they are minor, likely from migraines, and are not clustered like MS’s constellation. She wants you to see the head of Neurology.

November ends.

Happy Thanksgiving, Kinzey! We are so grateful for you,
& for Wyatt. He was ok with turkey, no potatoes,
but he kept eating gravy with a spoon
& stealing pickles & olives off Evan’s plate.

Elly loves pickles and olives too!! Happy Thanksgiving to you guys!

He also sucks on lemons! How are you?

Crazy! She does too!
I’m doing ok.
My MS has been messing with me really bad. I had to stop working.

That’s awful. Are you on disability?

Not yet, but hopefully soon. Mostly just scared about the future.

I’m sure. My symptoms are really mild,
but I worry about the future too. It’s like a time bomb.
Thinking about you a lot. Much love.

Much love to you guys!!

Over the next few weeks, you meet with the Chief of Neurology, a small Chinese man who wears flamboyant ties. Communication is sometimes difficult because he speaks quickly in accented English, but you like him. He reviews your tests, repeats some of them, and orders a few new ones. During one—which involves jolting you with a pronged instrument and measuring the response through electrodes—his neurology technician obviously gets an odd reading, because she frowns at the computer screen. She jolts your left eyebrow a couple more times, making it leap and sear repeatedly, but gets the same result. When the neurologist comes in, the technician points at the screen. The neurologist gets very excited, actually claps his hands. “Textbook!” he exclaims. It appears he means this literally—he pulls a textbook from the shelf and flips through it, finding a page whose illustration matches your brain’s electrical response. They talk animatedly for a few moments, and then he shows you the book. “You have a lesion on your brainstem. This is the textbook response,” he points. “Are you sure?” you ask. He nods. “We could do more MRIs, but they will show this. I am sure.” You think a minute. “That sounds awful.” He shrugs. “Not really—nothing to worry about unless it changes or gets worse. Call if it gets worse. But it’s not MS.” As you leave, the desk asks if you need to make a follow-up appointment, and you say, "I guess not."

And that’s it.

They had been searching for a Grand Unified Theory that could incorporate all your symptoms into one syndrome, but there was none. What you are left with is a collection of individual irritations, none insidious. Some numbness at your nerves’ peripheries. Carpal tunnel. A tendency to migraine, which resulted in some minor brain lesions, but which don’t form microclusters in the manner of MS. One terrifying-sounding-but-boringly-mundane lesion causing the dull facial sensation in your cheek that, in the following years, does not deteriorate further.

And yet, in the following years, signals between you and Kinzey deteriorate. She stops returning texts; messages bounce back; mail is undeliverable. A lesion, a blockage in communication. You find her on Facebook—because the two of you are not friends, you cannot read all her information, but she posts various MS awareness links before her account goes inactive. Wyatt lost his birth mother once; he may lose her again. But, for now, he won’t lose you.

The truth is, for all the parallels between you and Kinzey, your situations couldn’t be more different. The very system that kept Kinzey in poverty, left without a safety network and unable to take care of the children she gives birth to, is the very system that allows you to be the one who can afford to adopt and raise him. Who, even in the throes of considering what a diagnosis of MS might mean, knows that your son would still have Evan to care for him, and behind him, a whole body of family and friends.

And yet she remains there, a persistent blank at the bottom of your brain.