To Swim is to Fly

Many years later, Cindi Peterson and her husband would buy up what remained of my father’s acreage when he died in considerable debt and my brother and I couldn’t afford to keep the farmland or the homestead that had been our family’s for three generations. The Peterson’s had tended the land for years and paid out a percentage to our family, and I now realize that must have been the little bit extra that kept us afloat, if afloat is what you call it. But when I was a little girl, Cindi Peterson tried with great tenderness and persistence to teach me to swim.

There are grainy 1970s photos of my brother and me at the Northwood swimming pool either before or after our swim lessons with Cindi. I was usually in the kiddie end, sitting on the shallow steps or holding onto the edge grinning up at my mother as she took pictures with our brownie camera. My brother was usually a bit deeper in, swimming away, but still looking at Mom, he and me still young enough to be playmates. Other pictures star Cindi. I say “star” because she had charisma, a certain 70s housewife cum pinup look that made you look.

I thought Cindi was a bombshell for all I knew about bombshells at that age. Perhaps I’d started watching Charlie’s Angels by that time so I thought Cindi had a kind of Minnesota farm version of the Farrah Fawcett brand. Except Cindi was large. Her arms and legs and torso were round but not at all flabby. Her bosom (because it seems completely accurate to describe her swell of breasts as a bosom) strained against the low curved neckline of her white swimsuit. And she was tan, the color of a gleaming chestnut-coated horse. The depth of her tan made the white of her swimsuit glow in the shimmering blue pool water, and her white blond hair, waved and feathered, sat atop her head like a dollop of whipped cream tops off a luscious dessert.

At least that’s how I remember Cindi. It sounds romantic, I know. But she was so very different from my mother. My mother who wore pantsuits and owned but didn’t wear a swimsuit. I had found it once in a hallway drawer where she kept table linens and embroidered handkerchiefs, the kinds of items you kept but never used. If I reach all the way back into my memory, or the memory that looking at old photographs imprint on us, I think she may have worn it once, at a lake, on a family vacation when us kids were very young? It was yellow and gold floral and made from a heavy, plastic-y fabric. I think it had a bit of a skirt. And even when I’d discovered it, in a drawer amid tablecloths and guest towels, it seemed to have no utility. I don’t remember her ever joining us to swim in the pool. My mother had had diabetes from a very young age, and was very careful about exposing her feet in sandals and never didn’t wear shoes, for fear of injury because she couldn’t feel her feet well. But I don’t think I remember her ever going fishing with us when we took those family vacations at Leech Lake either, siting in the boat as we threaded worms onto hooks and learned the difference between walleyes, northerns, and bullheads. While she never said she was afraid of the water, now I wonder why she herself didn’t teach us to swim.

That was left to Cindi, the neighbor lady who gave kids from the area lessons. I remember how she tried to coax me to trust the water. As with most things, my brother had no issues with swimming. He would soon pass the test that allowed him under the ropes and buoys and into the deep end. Soon some of the neighbor boys would come with us to the pool, and while my brother and his friends wrestled in the water like puppies, I laid my head back against Cindi’s bosom as her hands supported my hips to suspend my little body perpendicular to hers. But the minute she removed her hands, I went from being on top of the water one second to piking down in fear the next, wanting my feet touching the bottom of the pool. Or if the water was too deep, I flailed at her, grabbing at her taut, tan skin for purchase, holding her close. Floating was simply something I could not do. Cindi taught me a lot about the water the way any teacher starts with the ABCs — I learned how to blow bubbles, tread water, how to kick while holding onto the wall, and then how to use a kickboard and leave the wall behind. But she was never able to teach me how to use the water to suspend my body when she wasn’t there to assist.

I have never been afraid of the water, so those early lessons accomplished that at least. I’ve never not wanted to don my suit and jump in on a hot day. Or take a boat ride. I could jump off a dock at our cousin’s cabin, do a front flip at pool, and even perform a handstand of sorts, because those moves only required me to hold my breath a few seconds, mouth closed, nose pinched. But I could never just float. Or so what we called the American crawl well enough to pass the deep end test. And I certainly never got up the courage to dive in head first, or even jump off a diving board. Except that one time when I was a preteen and a camp counselor and the long line of kids standing on the ladder behind me forced me to jump and I still remember feeling like I would never rise to the surface.

Swimming is just the start of it, a thing I can almost do. I have never ice skated or ski-ed or even slid barefooted across a wet floor like my brother and his friends did when my mother washed the kitchen linoleum. Having to give up control or lacking faith in my body to react, to stabilize me when met with unpredictable physical influences of water or speed or slickness, has always been…an impossibility. There are other things I’ve always been afraid of. Heights is one. Bridges is another. Singing in front of a crowd, or anyone. Asking for want I need. Or what I want. Because I’m afraid the act of asking is the same as admitting weakness. And now that I’m older, middle-aged at best, I’ve grown afraid of my body in a different way. Once I was afraid my body would embarrass me, that it would get injured; now I’m afraid of how my body will communicate to me that I am dying, soon to be out of the time I need to stop being so afraid.

It was probably 1981 or 82 when I had my first major surgery to correct a length discrepancy in my left leg compared to my right. Physical therapy wasn’t as accepted as necessary for healing that it is now, but my mother must have talked with Cindi and come to an agreement. By then, Cindi had an above-ground pool on their farm, their driveway about a 1/2 mile down the gravel road from our driveway. So I spent a couple of visits to Cindi’s pool, not swimming but walking slowly through the water, using its resistance to strengthen my weakened leg. But our relationship had changed. I was awkward around Cindi now, much like I had become awkward in so many situations. Despite an open invitation to use the pool any time after those first instructional visits, I didn’t go back.

Thirty years later, when we were preparing to sell my father’s farm, I still thought fondly of Cindi when I thought of her at all. I knew the rumors. People said she’d gotten nasty. That she dictated the terms of their family life and her husband was no more than a pawn to her demands. People said she carried around a shotgun, and sometimes, ironically, shot it at trespassing hunters. I seem to remember Cindi coming to my mother’s funeral when I was 12. And then my father’s — no, that seems impossible, but surely she would have? — about a decade ago. She must be, what, 70 by now? But Cindi with her white-blond hair and white-white suit and beautifully browned body is how I think of her, and I think of her often now because we take my son to the pool whenever we can. He loves the water. So when I get a whiff of that signature scent of chlorine and suntan lotion that makes you feel 6 year old again, I think of Cindi. And I bet all those rumors about her are untrue. She may have done all of those things, but those rumors have the scent of “who does that woman think she is?” rather than a woman gone rouge.

For years, I just let my husband, Mark, take our to the pool. But when he was a year or two old, I enrolled Noah is a baby class at the frigid pool of the neighborhood high school. It’s what you did when you wanted to be a good mother who could check off another line on the long list of things good mothers do. Teach your child early not to be afraid of the water. Babies, we were told, instinctively knew to hold their breath underwater. And Noah certainly did. The pool was so exciting for him. He held his breath; he kicked his legs. He splashed his hands against the surface of the water with an energy that he didn’t use for much else. He didn’t reach up to play with the tiny stuffed fish we hung from the handle of his car seat. Instead of stacking wooden blocks on the tray of his high chair, he just pushed the blocks off onto the floor. We already knew he had “low tone” — that’s what the internet called it when I searched for why he wasn’t able to hold his head up and balance on his little elbows like every baby did for their first mall photo shoot. The photographer had to roll a small washcloth under his chest to lift him up enough to look like he was looking toward the camera. And we knew he wasn’t meeting milestones. But some kids didn’t, I was told. And often baby boys didn’t. So I tried to be the kind of mother every other mother I knew tried to be: a good mother who put her worry aside and took her baby to the pool.

Soon Noah’s love of water — pool, bath water, play table, sprinkler, fountain, hose — irritated me. Not because I begrudged him his joy, but because it was a sign. Autistic children, children with a diagnosis, loved water. They loved water, they loved lights, they love to put toys in rows, they love to make things roll and fall. I watched Noah like a hawk. How many more signs would there be that there was something wrong with him? Every cute thing he did that someone might comment on, “Doesn’t he just love the water?” for example, made me sad. As the months went by and the other babies we knew added skill after skill, all anyone could really say about Noah was, “Doesn’t he just love the water?” One afternoon after our swim class, I was carrying Noah across the cement locker room floor after rinsing ourselves off under the showers, and I slipped. I fell awkwardly because I rearranged my body to protect his. We were both fine, but I hated slipping. I hated feeling out of control. And I hated that Noah had been in danger. It would be the last time I took Noah to the pool by myself, and Mark, who loves the water anyway, became the default swim parent.

Until Mark got leukemia, that is. During Mark’s initial treatment, there wasn’t much call to take Noah to the pool. Mark got sick in July that year, underwent numerous rounds of chemotherapy, and had his transplant six months later. Friends or sitters would take Noah, who was ten, to the wading pool while I was at work, but there wasn’t time to do much beyond holding our lives together that winter. One of the more terrible side effects for Mark of having leukemia and getting a life-saving stem cell transplant is that he has to continue, even in remission, even if he becomes technically cured, to try to lighten the burden on his immune system. With that consideration, Mark stopped teaching. And with that consideration, Mark had to stop swimming.

But that didn’t mean that good mothers don’t do the right thing, even if they hate swimming, so I once again enrolled Noah in swim classes. These classes were adaptive swim classes, and I had had ten years to get used to life, however reluctantly, with a special needs child. The woman who taught this class was large. Unlike Cindi (though her name was also Cindy), her skin sagged low off the bone, and her suit, a muddled floral top with a muddled purple skirt, amplified her pale skin in the pale light of the middle school pool. Because Cindy had other students, and Noah was unable to be safe in the water without assistance, I got in the water with him. And that was fine. He wore a safety belt and was buoyed by the water, and I had my feet on the ground. I could lead him through the exercises, Cindy showed to us while she worked with the other kids. But the other kids, they were skilled enough to practice by moving up and down the length of the pool no matter how slowly. Cindy wanted us to do the same. And so did Noah. And I … was too prideful to limit us only to where my toes touched. In five feet of water, my five foot three inch self could just keep my chin above the surface. Beyond that, I would not only have to guide Noah through his exercises, but at the same time, I would have to keep myself afloat.

Much like when I was a child, I could manage to tread water for a short amount of time. And since, when staying in hotels or even going to the local pool with Mark and Noah, I had been very willing to get in the water, even doing a sort of dogpaddle/applebasket stroke that mimicked swimming, could take me from one side of a pool to the other, and most importantly, keep my head above the water. But problems arose as we moved into deeper water. The pool depth went to twelve feet, so getting to the five foot mark wasn’t even half way down to where Cindy laid out all of the practice gear like kickboards and tubes. Also, twelve feet was where Noah wanted to go too. Noah’s love of water had continued to grow as he did, and his very favorite thing to do is to jump off the side of a pool into deep water. He loves to feel the impact of the water, hold his breath until he comes to the surface. He practices holding his breath in the bathtub, able to push his face beneath the bubbles and hold it there for nearly 15 seconds. But what the hell was I going to do once I couldn’t touch the bottom of the pool? Keeping myself afloat was one thing, keeping Noah afloat so he didn’t have to hold his breath beyond 15 seconds.

We would stay near the side of the pool. I would be able to grab onto the edge with my left hand, while assisting Noah with my dominant right. If he started to swim too far away from me, I could grab onto his flotation belt and drag him back with me to the wall. It was inefficient, but we managed. It was exhausting, but at the end of every class I felt more deeply connected to Noah. I had helped him do something he loved, while we held on to each other doing it. Cindy was there to rescue us if I couldn’t manage, but I was managing. Eventually I began to take Noah to the recreational pools my myself. We rarely ranged beyond five feet, but that was deep enough for me help him get up out of the pool and jump back in. Over and over. Then we would ‘swim’ to the toddler depth and back, practicing what we learned from Cindy. A few times we pushed our limits, but the minute I felt unsafe, I would tense up, maybe swallow some water, and I simply became scared.

One of the ways I’ve learned to cope with my anxiety — an anxiety that I’ve described to my doctor, my therapist, my friends, as feeling like I’m in a closed room that is filling up with water, and there is only an inch or two between the surface of the water and the ceiling from which to draw a breath, and I’m so, so tired of trying –, whether that’s anxiety due to having a disabled child or simply being me with my brain in my body, is by being brave. Being scared comes naturally to me. I’ve been scared since I was a child. I was scared when I had surgery. I was scared of my body. I was scared when my mother got sick, I was scared of her body. I was scared when Noah started having seizures. I was scared of his body. (Let’s face it, I still am. At 14, his body is doing all sorts of crazy things I’m not convinced I signed up for; and at 48, my body is doing all sorts of crazy things that are at best a nuisance, and at worst, a reminder of my mortality. I have always been scared off all the things that could hurt us, internal or external. So now, within reason, I do things that scare me. I’m not talking about bungy jumping or even roller coaster riding. But I try to show up. I have tattooed “Be brave” on my forearm to keep me honest.

To confront my childhood fear of singing in public, I now give work speeches in front of groups. To work on my fear of failure and rejection, I submit my writing to magazines and agents. I have even cooperated with my fear of heights by taking a trapeze lesson. (I did it, and don’t ever need to do it again.) I recently declined a sunset flight in a two-seater airplane with my friend’s husband for a pilot, and the next day I regretted saying no. I can’t say for certain I would say yes should that opportunity be offered again, because I can’t imagine calling Mark and Noah and saying, just so you know, I’m taking a huge risk with my life and I apologize if I don’t come back. But I’m kind of proud of myself for even thinking I should have said yes.

And I can credit all sorts of things for why I am able now to take risks that, as a child, I shrank from. But I have Noah to thank for valuing bravery rather than prioritizing my fear. Every day that he had a seizure and we had to pick up the pieces of our lives and pretend we hadn’t just had a bomb set off in our home, I learned to be brave. Every doctor’s appointment when some test could tell us some very bad news about our son’s future, I had to be brave. Every time I had to hold him down for a procedure, I had to tuck my fear away. And when I think of this young man, now fourteen, with the cognitive and physical abilities of a toddler and confront the depth of my love for him but also my deep sadness over his unrealized potential — which is every.damn.day — I have to be brave. I owe my bravery to Noah, and I try to show up for him even when I want nothing more than to hide.

Which explains why, this past Fourth of July, I got it in my head that Noah and I should go tubing on his grandparent’s lake. Mark’s sister and her family kept their motorboat docked there and Noah’s cousin, just 6 months older than he, wanted to take a large inflatable “chair” out on the water. Despite Mark’s parents having lived on the lake for years now, we rarely went out on it, and we never swam in it. And that’s often a point of contention between Mark and I — Noah loves the water, so why can’t he swim in the lake? Of course, in my heart, I know why. Noah can hold his breath and such, but he also swallows a lot of water and doesn’t really recognize when something is dangerous, so he could step on a sharp rock, hit his head on the dock, eat lake weeds, what have you. But! In the name of bravery, and fairness, and not acquiescing — I said, Noah and I want to go tubing as well!

Tubing is a thing I have never done. Water skiing is a thing I have tried once as a kid, got dragged on my face after never truly standing up, and never tried again. Boats are fine for fishing out of, but I’ve never driven one so know little about the physics. I’m even a little awkward wiggling myself onto a circular floatie in order to just sit on one. But this big seated “tube” tied to the back of the boat? I’m sure we can do that. And, I think, everyone must have thought I knew what I was doing rather than just being brave, because no one gave us instructions and I assumed that being towed was just like floating on the water but at a faster clip.

After stuffing ourselves into safety jackets, Noah and I got settled onto the tube. I noted that there were no seatbelts likes on a carnival ride. Which, of course. Being belted into something that could capsize would be a very bad idea. I found the handholds, so that reassured me. But Noah doesn’t have the strength or occupational skills to hold onto a handle, so much like during his swimming lessons I held onto the edge of the pool with one hand, and Noah’s flotation belt with the other, I grabbed a handhold with my right hand to stabalize us, and Noah’s safety vest with the other. The first slow lengths as the boat pulled away from the dock seemed to indicate this ride would be a pleasure cruise. But as my brother-in-law picked up speed, the “chair” began to tip backward. I was unaware that this was par for the course. That we couldn’t just toodle along on the water at a slightly quick pace but instead we had to pick up speed in order to even out the raft and regain a horizontal position on the surface of the water. But unlike at the pool, Noah’s weight, now around 100 lbs was not buoyed by the water, but instead being pushed and pulled by centrifugal force. And that’s not even considering how I needed to manage my own weight which as about twice his.

What seems critical now — now that we’ve survived this trip around the lake that I will never volunteer us for again — is an understanding of the handsignals. While my brother in law drove the boat, my sister in law kept an eye on Noah and me. But she was also, in addition to our safety, interested in us having a good time. And for most people, having a good time when being towed by a boat is to go fast. The handsignal to go faster is a thumbs up. I assumed a thumbs up was an agreement that we were, at the speed we were at, in the current situation which really felt like a bad situation by the time we were too far to turn back, doing ok. So every time she gave us a thumbs up, I gave her one back. Which translated into, doing well, but let’s crank it up a notch. The faster we went the tighter I held on. (Again, science isn’t really my thing, so probably if I had relaxed, we’d never have been at a risk for being thrown off, but I couldn’t tell my brain in it’s panicked state that.) The faster we went, the more upright we could sit, but the more Noah slid into me until I thought we might get pushed off the side when the boat turned. And despite my stubbornness, and my inability to admit when I’m out of my depth, I eventually let go of the handhold long enough to drag a finger across my neck giving my most clear handsignal that I was done that I could.

Obviously we made it back to the dock. Noah and I played in the water a bit before we all went up to the house to bathe. My right forearm was so sore I could barely flex my wrist. My abs were so tired from trying to stablize us my ribs ached. As we walked to the house, Mark helping Noah navigate the steps, I admitted to all of my misconceptions and fears. He said, “Yep, that’s how I felt too.” Incredulous, I asked, “What? You’ve taken Noah tubing before?” “Last summer,” he said. “That’s why I didn’t want to do it again.” And of course I was put out. “Why didn’t you warn me?” I wanted to ask. But we were on dry land, safe, Noah had had an experience, and…I had been brave.

***

Tonight at my swim lesson, my trainer, Melissa, taught me how to do the breast stroke. For the past two weeks since I’d transferred to this new gym and requested a swim coach, we’ve worked on the basics of breathing while doing the freestyle (aka, that old American crawl.) The coordination of all of the elements it takes to swim freestyle laps correctly is still many of hours of practice away. I get it but I’m also easily distracted and when my mind wanders, so does my technique, and I either lose my bearings or end up with a mouthful of water. The reality of swimming is and always will be — unless you pay attention, you can choke or flounder or even drown.

My form while doing the breast stroke is ridiculously awkward, and I have to be careful not to laugh so as not to get water up my nose. The frog legs and the arm pull and then the “glide” … well, it’s easy to get off the beat like when Baby is first learning the merengue with Johnny in Dirty Dancing and she keeps stepping on his foot. But when I hit a groove for maybe five to ten yards, the exhalation of the breath underwater comes naturally to me and I’m hopeful that with practice I can not only complete an entire length of the pool while doing the breast stroke, but do it gracefully. Swimming feels like dance when you are doing it right. It’s effortful yet liberating.

But there is something else about swimming that distinguishes it from other physical activities. It’s the buoyancy of the water and the way you can speed up if only you relax. It’s the balance between tension and release. The years, they have begun to weigh on me. And I get tired sometimes of holding up my head and trying to draw breath. But I have learned, or at least I am learning, acceptance. I cannot change who Noah is, and to needlessly bang my head against the wall of our reality is futile. I cannot change anything about the past that led us here. And accepting him isn’t capitulation as I feared for so long. It just means you direct your energies in the right place instead of wasting your effort. Swimming is about maximizing your movements and not doing more than you have to. The more you push, the more rigid your body, the more rushed your motions. You simply have to work with the water, not against it.

When I explained to Melissa why, at 48, I wanted to take swimming lessons, despite being a “recreational” swimmer, I told her the story of tubing earlier in the year. That’s just one of the reasons, but I had certainly wondered as we banked through a turn and I thought Noah might go sliding into the water that I wasn’t sure how I might help him as we waited in the water for rescue. I also told her how my husband can no longer swim with my son, but my son still loves the water no matter how big he gets, and he needs me swim with him, not hang onto the edge. And I explained, maybe not in so many words, but in words that reference fitness and weight loss and non-impact exercise being good for aging joints, that I want to be in better control over my body. I wanted to learn to trust it. I wanted to stop being afraid.

To my surprise, the backstroke is the easiest of the swim strokes I’m learning, or re-learning. (The butterfly isn’t great on the shoulders at our age, Melissa tells me.) And it’s when I first launch back and float a few lengths of my body, before I begin to windmill my arms over my head and my feet flutterkick, that I began to think about Cindi and those days in the sun at the Northwood pool, my head leaning back against her shoulder, my back supported by her front, and her strong body smelling of cocoa butter gliding us as one along the water. In those seconds before she would let go of me and hope I could hold the position, I could believe I would one day learn to float. Over 40 years later, I no longer pike down into the water. I no longer fear I’ll fall. It helps, of course, that the lap pool only goes to 5 feet, so I’m never in danger of not being able to touch the ground. But I find I don’t want to feel the rough bottom of the pool beneath my feet. Actually, I find I don’t need to.

On the Surface

Mark is hosting Dungeons and Dragons tonight. Since taking disability after cancer treatment, D&D is Mark’s most effective treatment against the depression that can sneak up on him if he doesn’t arm himself with a purpose. Noah likes to sit with the gamers (Noah signs “friends” by alternating his index fingers, laying one over the other) at the card tables set up on the back porch. When the players laugh, Noah laughs, though he doesn’t understand what they are saying, why what they are saying is funny. Occasionally he takes a turn rolling the dice, but usually he watches his iPad, one ear on the conversation, waiting for words he recognizes, waiting for laughter.

Tonight Noah has been given a stack of blank copier paper and a blue highlighter. He bends close over his work like a jeweler inspecting a tray of diamonds. His nose almost touches the paper, he is both so intent but also so almost-blind. We still don’t understand his vision issues. He is significantly near-sighted, but being close to a screen or book also helps focus his eyes, still the nystagmus that makes his eyes flicker and dodge. A variety of examinations by a variety of experts have yielded no concrete answers, no applicable strategies. Some tell us to try glasses; some say glasses won’t really help and will only confuse his adapting perceptions. Noah can’t tell us much. He just adapts.

I have walked past the door to the porch several times to check if he’s being disruptive to the game, but he is sitting quietly next to Mark, diligently drawing. I post a picture on Facebook of him in such studious pose, label it: Dungeon Master’s Apprentice. The picture gets many likes. But that captured moment is like so many: on the face of it, Noah is accomplishing something that looks so like what other children are doing. I post a picture of him riding a horse like he is taking a lesson, but it is hippotherapy. I post a picture of us at the pool, but after years of lessons he still cannot swim and we stay in the shallower end. I post a video of Noah ‘running’ the 50 yard dash at a track and field event for his school district’s special needs children. He crosses the finish line though he comes in last, and I am proud because he mostly stayed in his lane, didn’t fall, and ran the whole length without an adult to guide him. But that is not competition; that is participation. And for us, it is enough, but it isn’t what it appears to be.

When I share pictures like these, usually adorned with a clever quip or positive message, I am sharing my son, and my love for my son, and our adventures as a family, with my friends and our family and many acquaintances. This is as it should be. But each time I share these pictures I am also lying. The lie is the one I tell myself in trying to convince myself that my heart doesn’t ache with sadness over the limitations of Noah’s accomplishments documented as celebrations.

I know I am not alone in telling this lie. Social media is full of them. Lies of omission told by the abused, the abusers, the lost, the lonely, the insecure, the in-debt, and the unexceptional. What we present is not what we are. What we present is only what we wish for.

At 9pm I decide it’s time to retrieve Noah from the porch despite his diligent tasking. His face and hands are littered in blue highlighter graffiti. He grabs for his stack of papers, maybe 7 or 8 sheets, says, “Wook!”, proud of his art. I oooh and ahh, and I try so very hard to ignore–no, transcend–the fact that every sheet is covered with roughly-drawn circles, the only shape in 13 years he has learned to draw. Pages and pages of almost-circles.

There should be a word for this feeling of almost. Bittersweet feels too tender, a word for reverie. I want a word that is pride and sorrow intertwined. I want a word, a fresh addition to the limits of language, so I can claim this state. At the same time, I berate myself, think a better person–a better mother–would have by now shed her sorrow, managed her disappointment, and internalized the optimistic messaging she posts along with her Facebook photos. I adore my child, and I am so proud of his half-words, and small gains, and his pages of almost-circles, but I too remain almost-complete, my mother-heart more break than burst.

Year Thirteen

3/4/18 | Today you turned thirteen years old.

For the second year in a row, you have strep throat on your birthday, so it is fortunate I didn’t plan that big party I have imagined but never held. You lack the ability to tell time, to know what a minute, an hour, a day, a year is, and so I am able to squirm off the hook. A few days ago, while you played in the bathtub with your cars and toy bears, I whispered to your dad about how I’m disappointed in myself, how I let my own ambivalence about your birthday prevent me from providing you with a birthday event you would delight in–trampolines, bowling, maybe visiting dogs at the Humane Society–, because you never realize what you are missing. Some days I think I should not be forgiven for the ways I skirt around motherhood like it is a fire I cannot get too close to for fear of getting burned. I am sorry that I cannot fake it better, even for you.

I thought yesterday that maybe we should just stop celebrating your birthday altogether. What a relief that would be. I wandered around the toy store looking for gifts to buy you, and keenly felt the pointlessness of my effort. Aisle after aisle, there is nothing left for me to buy. We own all of the toys for babies or toddlers that might interest you, and everything else is, well, not for babies or toddlers, especially one who is 90lbs and nearly as tall as my shoulder. I bought some foam blocks to add to our collection because Legos frustrate you and anyway you cannot imagine the castles or spaceships you might build, that might spirit you away. I bought a dog-shaped sprinkler for when the weather gets hot again, because you still love water as intensely as when you were a baby. There is also a Thomas & Friends train track. We will wrap your presents and you will thrill at the unknown even if you barely pay each gift itself a second thought after opening.

On my drive home from the store, a fragment of what I thought was a poem flitted through my mind: “…I put away childish things….” I thought perhaps it was Kipling, but a quick online search and I was reminded the line comes from First Corinthians, the Bible’s chapter on love.

11 | When I was a child, I spoke as a child, I understood as a child. I thought as a child; but when I became a man, I put away childish things. 12 | For now we see in a mirror, darkly, but then face to face. Now I know in part, but then I shall know just as I also am known.

You won’t have that opportunity, I suppose, to transition into a man. You’ve just barely become a child. At six feet you may be six, if we are lucky. I don’t know what constitutes a teenager, an adult: is it merely years on the earth? Must we also have our years and our body and our mind in sync as well? Who would have thought, thirteen years ago that this would be our reality. I feared, but I couldn’t have known. I’ve stopped trying to predict our misery; and yet, holidays release a predictable, yet still relentless, wave of depression that subsumes me before I can anticipate its arrival. Even as I know that birthdays don’t change anything. Yesterday and tomorrow, we are the same.

When you turned one year old, I wrote to you in a journal I once thought you might read: “I am so ambivalent. You are not what I expected and yet you are everything. In many ways, you are as puzzling to me as you were the day you were born and yet I know you as well I know my own body.” In thirteen years, those words are as true and as bittersweet as when I wrote them. It seems that as you grow, the mirror will remain dark, and I will still only ever have a partial understanding, a glimpse, of who I am and who you are to be.

In the coming years, whether we count their passing as worthy of celebration or no, our little family will stumble along with our good intentions in the lead, hoping to get this one life right at least part of the time. Enough will have to be enough. I can forgive myself for not yet telling you it is your birthday this morning, for not throwing you a party, for not knowing how to raise you all of the days in between the years. The rules became inapplicable to us so long ago. And I can accept, because I have to, because I’ve learned I have to, that I cannot guarantee you a safe place in this world. Age will not bring you independence, but I will joyfully keep you by my side as long as I am alive to hold your hand in mine.

Perhaps every year, I should be celebrating my birth day on yours. Your birth, your life, has sculpted me in ways I innocently, naively, could never have imagined. I dreamed of castles, an idyll, but was rewarded with something more elementary. I was reinvented at your birth. And now, after thirteen years of growth, I can say with certainty I need never have worried as I did then that I wouldn’t love you. Or as the seizures came, as the disappointments came, that I couldn’t love you. If there is one star that shines brightly, inextinguishable, in the dark and fathomless sky of our future, it is love.

Home

(was Grounded)

He says, “Home,” and we don’t know what it means. He says it when we are at home. He says it when we are all together, my son, husband, me, sitting on the sofa, around the TV. He says it when his grandparents visit and it confounds them. “Home.” We say, “We are home, honey.” It’s not the answer he wants. “Home.” “Yes, we are staying home,” we say, thinking maybe he doesn’t want to go anywhere. It is a Saturday so no school, no therapy sessions, no sitter. He can’t say those words, so maybe this is efficient shorthand for his desire. We could go shopping, we could go to the park, or to an event for special needs kids, which are almost always on Saturdays mornings, but we don’t because the weeks are jam-packed and maybe we all just need a break from trying so hard. Maybe that’s all he means: “Home.”

Maybe he is talking to me when he says, “Home.” I rarely am. After I drop him off at school—his still-small hand in mine, his weighty backpack stuffed with his feeding pump and supplies, some extra pull-ups, some lunch he won’t eat, slung over my shoulder as it’s too heavy for him with his weak torso and stumbly gait to carry—I drive to work and spend nine hours there, sometimes more, doing what needs to be done. After, I go to the gym, or to play tennis. Often I stop at the grocery store, run an errand, meet a friend. Sometimes I have a drink or two on Fridays. My husband or the sitters have cared for him since the end of the school day, 2:30. I am rarely home before 7:30 and his bedtime is at eight.

At 8 pm, I once again I wrap my hand around his, support him as he unfolds his stiff legs from his usual cross-legged position on the couch, walk with him to the bedroom. A nighttime pull-up—thank god he hasn’t yet outgrown the XL children’s size yet—, some warm clothes as his figure is so slight he is always cold, melatonin to help him fall asleep or he’d be up for hours like he has been his whole life, his brain waves misbehaving since the beginning, and he curls up with his favorite blanket, now almost thirteen years loved, and descends hesitantly into sleep. I realize I’m little more than a token mother by normal standards. But I will spend the next ten hours with him and with luck he won’t wake to know I’m there.

I climb into bed next to him because I still don’t trust that his seizures are truly under control. Even his most recent tests show the atypical activity is still happening and happens most obviously when he sleeps. The shark is in the water. It’s been almost three years since his last one but I am well-conditioned to believe it’s only a matter of time. Seizures do that to you, create an environment of unsafeness, a standard of alertness, not unlike expecting a bomb to go off. My therapist called it PTSD, but that seemed somehow like I was appropriating someone else’s holy terror. Yes, he’s had a seizure on a plane, causing it to turn around mid-flight and return to the airport. He’s had one in a hotel in a strange city and an emergency team stormed our room and rushed him to a strange hospital we struggled to locate. He’s had ones that turn him blue, ones that wouldn’t end despite medication, some ending in a call to 911 and the lights from a first-responder fire truck and the following ambulance lit our street and woke our neighbors in the middle of the night. “Those poor people,” I imagine they said to one another. “There by the grace of God go I,” I imagine they meant.

We stopped trying to vacation. We didn’t even trust a day trip to an unexplored town, or a nearby water park. It became hard to leave the house if we didn’t really have to. At least at home, the curtains hid the worst, and our brave smiles did the rest. But at the same time, it became harder for me to stay in it. The walls closed in. The doorways shrank. The air grew heavy. Being unable to help my child, to ensure his safety, did something to my pride, did something to me. I began looking sideways at life, never wanting to catch its eye in case it noticed me and lashed out again, master to servant, wolf to lamb.

For the first 17 years of my life, I lived in the same house on land that my father’s family had owned for 3 generations. From as early as I can remember, I wanted to be anywhere but there. Not that my home was unsafe; just that it wasn’t ever me. I’ve been restless when it comes to houses ever since.

Like any other 20-something, there were numerous apartments, but I’m always a little shocked to say aloud to someone that I’ve owned four houses. We bought our first when I got tired of living in other people’s properties. Duplex owners had worn me out. We had no savings, but started circling houses for sale in the local paper, before, I hate to say, the Internet was anything more than AOL dial-up. I had heard about a neighborhood where all the gays had moved: cheap and ripe for reinvention. I got pregnant while we lived in our starter house, painted baby-poop brown, which featured a tiny shed in the back yard that once housed the previous owners rideable train engine. I was sure we needed a bigger house since this one had two bedrooms on two different levels. We were starting a family: we were going to need space. Lucky for us the neighborhood had boomed and we sold the house for double what we’d bought it for.

The problem with selling a house in an in-demand neighborhood was that it sold quick, and we struggled to find the next house, the house my son would be born in. We bought a four-square on a busy street that had pocket doors and a dramatic stair-case up to the second floor. The backyard was expansive. I should have loved the house, but it felt dark with its deep mahogany woodwork, high ceilings, four bedrooms, and the start of the seizures.

In less than two years, we were walking around the neighborhood and saw a for-sale sign. Mark ran up the stairs and peaked into the house, while I waited on the sidewalk with Noah’s stroller. “You’re going to love this house,” he said. And we bought it, selling our cavernous turn of the century house for a small loss. Our new house was my dream house. A 1020s California bungalow gussied up by a previous owner who had also been a carpenter. Classic stained glass windows, built-ins, light woodwork, plus a high-end kitchen with granite countertops and a Bosch dishwasher. I was in love. But our needs outweighed what the house had to offer. The stairs made the house unsafe for Noah; cancer made the house a hospital. So again, we moved.

Last year we moved into a new house. It’s big, too big for a family of three. But there is space, in the rooms and in the halls. Space between us and the neighboring houses. Space between us and each other. Space akin to breath akin to hope. For the time being, we’ve left the memory of his many seizures behind, and they have yet to darken this doorstep. Cancer too, for that matter, though there is now room for a lodger. I fear they both will catch up with us before long so I keep moving, superstitious of getting too comfortable, of safety denied. Maybe if we don’t stay too long, they’ll lose our scent. Maybe if I don’t stay still too long, I can dodge weight of my choices.

“Home,” he says, but I don’t know what that means.

Examinations

 

(Revised)

 

I

The floors of the examination rooms at the Mayo Clinic were always cold. I kept my socks on until the very last moment. I stayed in the changing cubicle, behind the pale, printed curtain, soft and faded like a child’s favorite blanket that kept the dressing area cordoned off from the rest of the room, until the very last moment too.  Though that meant waiting until everyone had arrived and then pulling back the curtain to reveal my appearance with a screech and clatter as the metal rings scraped along the metal rod. Before advancing into the room, I had to stop and strip off my socks, my bare feet on the cold floor forming a memory that would last a lifetime. My mother and father sat on minimal metal and plastic chairs flush against one wall.  Lined up along the window across from them was the phalanx of doctors who would be examining me.

During the years I did not have surgery, I saw Dr. Peterson twice a year in an examination room on the 16th floor of the Mayo Clinic. During the years I did have surgery, I was there more often. He was the only recurring character during these nightmarish visits (except for the pale nurse who sat at the reception desk and looked like a model with her straight blond hair parted down the center.) An orthopedic surgeon, Dr. Peterson was, I knew, well-regarded, but I didn’t know at the time by whom or for what. All I knew was that ever since I could remember, my parents and I, and sometimes my brother before he was old enough to stay home alone, traveled ninety-minutes to Rochester from our farm near Austin to see him, specifically. To take my mind off the appointment, my parents challenged me to find as many different state license plates as I could in the parking ramp outside the clinic. I suppose it was a small comfort to know someone from Wyoming or New Hampshire had come all the way to Minnesota for help from a doctor like mine.

Mayo was exotic—I remember seeing a family in Indian dress and men in turbans and young girls in Mennonite prairie dresses and aprons for the first time there—and thus terrifying. Why was there something so wrong with me to warrant being a patient at such a place, a place to which people flew over oceans? But Dr. Peterson, everyone seemed confident, was the man for the job, the only doctor in the country, I believed then, who knew how to lengthen legs.

But with Dr. Peterson came that cadre of blue-clad interns and suit-wearing academics who stood behind my famous surgeon with the brown wing-tip shoes and half-moon glasses as he examined me from his perch on a rolling stool, all of them bent forward like vultures peering down on prey.  Each visit I would be introduced to the extra people who followed him into the room, but since I never saw any of them again, and none of them ever spoke directly to me beyond the initial greeting, I never bothered to identify them as people in so much as interlopers to this private exhibit that featured me as the main attraction.

Each exam was the same. I would exit the cubicle, my clothes folded on the wood-grain bench behind me, socks stacked on top, and walk out toward the adults in the room while wearing nothing but a hospital gown with two ties, one behind my neck, the other at my mid-back, and my own underwear. Presenting myself in the middle of the room, I silently waited for instruction. It seemed wrong to proceed without being told what to do, though my next moves were as well known to me as practiced as a dancer’s choreography.

Standing in front of Dr. Peterson, he would take my shoulders and turn me away from him. Then he would open the tie at the middle of my back, take both sides of the gown and drop them off my shoulders, letting it hang down in front of me like a column of cloth so most of my body was bare. I would stand stock-still, unable to move, like Lot’s wife after she looked. Not just because I was nearly naked in front of a group of strangers, but also because allowing this examination, standing still and being studied like some insect pinned to a display board, filled me with a paralyzing anxiety that flooded through my body like ice water and made me near unresponsive. Never did it feel like this was a normal sequence in the life of a normal kid, no matter my age: undress, be instructed, be examined, submit.

All the fight had been drained out of me already in the crying and pleading arguments I had with my unwavering parents that began the day my mother reminded me of the appointment, escalated the night before, and continued through the glass doors of Mayo’s main entrance, its rotating doors sucking me in like a vacuum, summoning me against my will. I did not want to do this, come to this place, and I wanted to be heard.

But I also wanted my parents to say I didn’t have to go. But they never did. Instead, they made bargains. If I just calmed down, we would stop at Perkins for onion rings and a Pepsi, or maybe Long John Silvers. (Austin only had a McDonalds.) They bought me word find and invisible ink puzzle books from the gift shop. Regardless, by then, I had exhausted my resources and could do nothing more than behave.

 

When Dr. Peterson said, walk across the room, I did. Turn and walk back, he’d say, and I would. Stop there, and he would roll closer to me, place his hands on my hips, push and knead, then rotate me and repeat, while I stood with a kind of anxious static in my ears, drowning out thoughts. As I got older and heavier, the fear turned into humiliation, bitter like salt, filling me up with solidifying tears.

Turn and bend at the waist, he would say. And I turned, and bent, and felt every pair of eyes in the room studying my bare back, my cotton-covered hips, my bare legs. Sometimes he took the waistband of my underwear and rolled it under to expose more of my back, looking for the telltale curve of scoliosis. The rest of the exam was performed on the table. I was measured, stretched, compared. The x-rays taken earlier in the day were hung on lighted screens: there I was. My bones, the shadow of my bulk, the unevenness in my legs. There I was, more real than I was in my own live body, and I wanted to own none of me.

I was rarely spoken to. Throughout the examination there was murmuring, but I was the topic of conversation. Dr. Peterson led the discussion, and each member of the group took turns describing his (and rarely her) observations, would utter short fragments of knowledge with conviction, and sometimes offer me a faint close-mouthed smile. But all I heard, as I stood there, sat there, walked there, bent there, laid there, was one word said repeatedly, discrepancy.

Discrepancy. I heard that term used to describe my body year after year, visit after visit. My left leg, as a result of a bone infection before I was born, did not grow as quickly as my right. Everything about my left side from the hip down was smaller, shorter: discrepant. A factual word, not meant as an insult by any of those who uttered it in my vicinity, describing my leg, not me. But when I heard it time and time again, the word clearly indicated I was faulty, inadequate, abnormal.

 

Dr. Peterson performed two complicated surgeries on my legs. The first—so rare that another girl who had the same surgery done appeared on the TV show, That’s Incredible!—was done when I was in third grade and I spent five weeks in the hospital, missing friends as well as missing all the lessons on how to do long division. A foot-long metal apparatus was attached parallel to my leg via four screws that punctured my skin and were anchored to my femur bone, which had been cut in half at the middle. At the end of the apparatus was a dial.

Each day, Dr. Peterson arrived at my hospital room during rounds and turned the dial the barest of millimeters because more would cause too much strain on my muscles and skin. Millimeter by millimeter, for five weeks, my left leg was stretched until my legs were of equal length. Then a measure of hip bone was inserted into the made gap, a strip of metal attached to secure the pieces together, and finally, a body cast molded over me from my toes to around my ribcage to keep me immobile through my tenth summer.

For many days, blood and fluid seeped out of the holes in my skin made by the protruding screws, dampening the absorbent blue sheets the nurses lay underneath me on the bed. When they were soaked and finally removed, they smelled like raw hamburger. Sometimes there was too much fluid and it was suctioned out. Any place they inserted an IV quickly got painful, so it was moved around my hands so often they appeared to have chicken pox due to the scabs. I bathed out of a pan, and peed into a different one. I was checked for bedsores.

When I was released, I wore a body cast from ribcage to the toes on my left foot. I was good at using my crutches and raced my classmates along the school hallways. When the cast was removed, my leg had shriveled, but the lengths of my legs were close to even. I got to wear sandals and tennis shoes. I didn’t suddenly improve at kickball and still ended up near the end of the line in gym class, but I was rid of the awkward, clompy gait that elicited stares as I shopped at the mall. But it didn’t last long, because, again, as I grew, my left leg again lagged behind.  At seventeen, once my body had completed most of its growth, the second surgery was done. Dr. Peterson spoke of medical progress, said they’d long since moved past that slow dial-turning surgery I’d had the first time around. This one would have me out of the hospital in three days.

To prepare for that last surgery, a series of pictures were taken of me so the doctors could determine their surgical plan. After so many years of the same surgery preparation, this process was new to me. For these photos, I was to stand, wearing only the bra I had arrived in, and a pair of provided underwear—triangles of crinkly blue paper connected around the hips with bare elastic that I struggled to pull on because I could no longer wear the largest youth size and I was too embarrassed to ask for something larger—and submit to being photographed from every angle.

I stood passively against the white backdrop, horrified at having to expose so much of my discrepant teenage self, as the man stood behind his camera and snapped, snapped, snapped at the captured moth I surely was.  I quickly looked away when these pictures were hung up during my exam, studied by the tidy Dr. Peterson and the half-circle of people standing behind him. These pictures were not in the anonymous black and white of x-rays, where one’s size is just a hint, a shadow, but in two-dimensional color, flooded unflatteringly with fluorescence. Those pictures were more than an examination; they were a record of my flaws.

After the surgery, I was out of the hospital three days later, this time with no casts, just crutches, and puzzle pieces for legs. This time, they had sawed both of my femur bones in half, took one and one-half inches of bone from my right leg and spliced it into my left. A metal rod was inserted from incisions at the top of each of my hips all the way down through the marrow of my bones. I woke from the surgery with an IV conveying morphine into my arm.  The morphine burned when it traveled from needle to vein, and it quickly became difficult to decide whether my leg pain was strong enough to justify the arm pain from a self-administered dose. The next day I found myself in the PT room, encouraged to walk on two broken legs by a physical therapist I fought against, raving, because I couldn’t believe anyone had the right to make me walk on two broken legs.

I was deconstructed again and again in those exam rooms at Mayo Clinic, then physically reconstructed twice over my lifetime, knitted together well enough to resemble someone whole, yet not at all whole.

 

II

I take my son for exams by the specialists at Children’s Hospital in Milwaukee, where he is undressed, inspected head to toe. The rooms are small, white and well-lit with floor-to-ceiling windows, the light muted by vertical blinds. During this particular visit, a geneticist takes each one of Noah’s fingers and examines the nails, the width of his knuckles, the flexation in his joints, to look for signs of a genetic disorder that might explain his eclectic constellation of symptoms. They judge the distance between his eyes, his hairline, the length of his feet, the feel of his scrotum, the roof of his mouth, the shape of his ears, looking for abnormalities. They find nothing out of the ordinary, no dysmorphic features to point them down a particular genetic path. But that simply makes the mystery of Noah’s seizure disorder and delayed development more perplexing rather than less.

The first six months of Noah’s life had been relatively normal. While he hadn’t been the most mobile baby before birth, and he seemed to have some hyper-reflexes as an infant, only the fact that his eyes never quite aligned as babies’ eyes do soon after birth, gave us any hint of a disorder, a fairly common and fixable one at that. Slowly I came to realize, by watching other babies and watching him, that he was significantly different.

I saw that Noah did not reach up and out to play with the small animals hanging from his car seat handle like other babies did. He couldn’t sleep for more than two hours at a time no matter which magic formula we tried; we even set up a video camera to record in the night, hoping for some hint of what was waking him. And he couldn’t hold himself up on his elbows at three months. The photographer at Sears had to stuff his arms underneath him like he was a rag doll for us to get a picture of him looking up into the camera.  You could tell that she knew there was something different about Noah too. I saw these things, all the signs that my good efforts—losing weight, the prenatal vitamins, the weekly doctor’s appointments, giving up sushi and lunch meat—had guaranteed nothing. I had been naïve to think I had earned special treatment from the universe. Unfortunately fate is not a meritocracy.

At the end of his first year, we waited in a different examination room for our first visit to a neurologist, after Noah had had his first three seizures and missed more milestones than he had met. I held my one-year-old son who had no idea, yet, that being examined was anything different from being adored. I was afraid, not only of the news we might hear about our child, but because I could feel a tingle of subordination playing around the edges of my already-frayed strength. I remembered too clearly being a mere scientific conundrum to the doctors who examined me, and I feared being reduced to the frightened child I had been, instead of holding myself together and being the mother I knew I needed to be.

That day I was grateful when the neurologist walked casually into the room, looked my son over head-to-toe, and pronounced, with contagious positivity: “That’s a good-looking kid you’ve got there.” He went on to say that he’d been doing this for twenty-five years and could tell the really severe cases just by looking at the child, so we really shouldn’t worry too much. For some time after that visit, I hoped that Noah would be one of the lucky ones. I needed to hope, so I did, until the seizures took that hope away.

At each visit to each new doctor, we must reconstruct Noah’s life so far. We reveal our family histories, or, because I am adopted, what there is of mine. I tell the story of my pregnancy, of his birth, of his first days. I tell people that my pregnancy and Noah’s birth were uneventful, but it feels like a lie. I shrug when I say it, like it was all no big deal; but to give birth is the biggest deal, regardless of the child.

I am thankful that Noah will not remember all those rapid-fire appointments, one after another—emergency room, doctor, CAT scan, neurologist, EEG, emergency room, allergist, neurologist, MRI, geneticist, orthopedist, and so on—but of course, that will not always be the case. These kinds of visits to specialists will not end, because the question of why Noah is the way Noah is seems unlikely to be answered since we have done every test science can offer us and received no revelatory results. I fear that the older he gets, the more risk there is that he will face the same deconstruction of self that I withstood as doctors visually dissected me during all those years of my own gauntlet-walking. Every day, in the eyes of so many, my son is different, less than, rather than valued as singular, incomparable.

 

Though I am his mother, I am no different than anyone else who looks at Noah and sees “other.” I have been forced—by love but more so by an instinct for sanity—to forgive his flaws in a way that I could never learn to forgive my own. I have made peace with the part of me that was so bitterly disappointed that she would spend her child’s childhood in doctors’ offices because she spent her own in them. I have humbled myself in the face of this great responsibility, come to realize that his life is not about me, only about him. I have learned to ignore the unconscionable inner voice that perseverates over whether this faulty mother simply gave birth to a faulty child.

The burden of parenting Noah is suffocating because there is no shrugging off the tough stuff. Taking Noah to his appointments breaks my heart each time. He cries, repeating, “done, done” with frantic sign language and abbreviated vocalizations, before we’ve even gone through the doors of the clinic. I cajole, and I demand, and sometimes I let the nurses take over despite his plaintive, “Mama? Mama?” because I am at a loss as to how to force my child to do these things he fears. I too want to say, “done,” and spirit him away to some remote cabin in the woods in some other time where there are no constraints, no obligations, no expectations, a fantasy world.

My parents must have felt the same anguish at each of my appointments. What I saw then as their lack of compassion was no doubt resoluteness, knowing that what they were making me do was in my best interest despite my dramatic protestations. The lesson is not lost on me, and if my parents were alive, I would thank them for being just as brave as they needed to be.

It’s been nearly fifteen years since I saw any doctor about my legs. I still have a metal rod in my left femur, and I still have some sensitivity and lack of strength on that side. But I’ve held together this long, and it will take a significant setback to force me back to an orthopedic specialist. The time will come, I imagine, as age creeps up and my bones break down, for me to be examined again. In the meantime, I count my blessings that I can run, I can walk, I can carry my son. In fact, except for some truths revealed by the scars on my legs and a slight limp when I am especially tired, I might even come off as what I so desired as a child: normal.

There is little about Noah that appears normal now. As he has grown, his oddities have become more obvious. As a toddler, he could be carried; there was no wonky gait to expose him as different. Now, when he walks across a room or an aisle in the grocery store, no matter how slowly, he will inevitably run into something that was not actually in his way. Such is ataxia. I hold onto the back of his collar, gently so he barely notices, to guide him when he veers too far off the path.

The doctors don’t bother showing us the results of his EEGS any more. They have told us time and again that the abnormal brain activity doesn’t tell them anything definitive. Unlike my body, my son’s doesn’t offer options for surgical intervention. We medicate, we prevaricate. The specialists offer us a collective shrug.

Noah has all ten fingers and toes, but he cannot use them dexterously.  Putting a train car on a toy track is an exercise in frustration. Scooping food onto a spoon is a hit or miss proposition; getting the food to his mouth the same. He loves to color, but his squiggles are just squiggles to anyone’s eye but his. He can kick a ball, but will most likely fall on the ground with the ball only inches away. He can have a conversation with me through his few words, sounds and gestures, but few others understand his mixed bag of approximations. Noah loves the things normal little boys love: trains, trucks, dogs, swimming, sandpits, books; but, at seven, the version of these things he plays with better suits a three-year-old. At twelve, he is much the same.

It has taken me years to see my son as more than the sum of his discrepancies. When I look at his baby pictures—all of us so innocent that I feel slightly sickened by our naiveté—in photo albums, or hold his arms down tight as his head is wrapped in gauze to hold tight a plethora of electrodes glued to his head so that specialists can examine what happens in his misbehaving brain, or watch him as he runs excitedly, but so awkwardly, across the grass expanse that circles the local playground, knowing he is being stared at by children and parents alike, I struggle to quiet the child in me who still fears being different, who took the blame for the things that made her different from everyone else.

Noah is not the child I imagined I would raise, and oh have I mourned that child—the one not made up of flesh and blood, but made up of expectations. So each day, I perform an examination on my own heart. When I push past the guilt and the blame and the fear, I sometimes locate the strength I built up to survive those surgeries, those stares, the study of my body, and I think I just might have enough to pass some on to my son too.

Taking Control of Your Health, a Q&A

Leslie Michelson’s terrific book on navigating the healthcare system, The Patient’s Playbook, is coming out in paperback later this month.

Navigating the realities of the system due to a family medical emergency at the time when the book was released, I found the advice and guidance Michelson offered so helpful that I requested a copy for everyone in my office. At that time, I wrote:

“Within every conversation about healthcare is also a conversation about our mortality. While none of us want to go through chemotherapy or surgery or chronic disease maintenance, one thing is true: if you don’t act as a defender of your health, who will? And with The Patient’s Playbook on your bookshelf, you will have a game plan for turning defense into offense in order to take control of your own healthcare.”

Handing a book on healthcare to someone, and saying “you’ll need this someday” is what you might call a tough sell. People don’t want to think about. But the conversation is important, and with the paperback coming out this month, we thought we’d revisit it.

I sent Leslie some questions, and he was kind enough to answer. This interview was originally posted on 800-CEO-READ’s In the Books site. Below is an abbreviated version of our conversation; please click over to read more of my Q&A with Leslie Michelson.

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Sally Haldorson: It seems as though in writing this book you’ve a strong commitment to insuring that people realize doctors are human, with as many presuppositions and influences and biases as any professional. In your introduction, you write in regards to the demands on primary care physicians: “No matter how charismatic, empathetic, and effective a doctor is, he or she cannot care for a human being in fifteen minutes.” Yikes! I think most of us can think back to our last doctor’s visit, whether 15 minutes or longer, and wonder just what was missed. How does planting this seed of doubt in the process (dictated by insurance companies) help empower patients? And do you think it is key that you aren’t an MD, so you can raise such questions?

Leslie Michelson: Physicians work very hard to do the best that they can in a world of constraints. They’re under enormous pressures to see more patients, more efficiently, while meeting enormous regulatory and reporting responsibilities. They’re very aware of their constraints, and part of my goal is to make sure that the patients who are the beneficiaries of their services have the same kind of knowledge of the constraints in which the doctors work, so they can better partner with the doctors.

My view is that our system doesn’t have the resources to provide everybody the quality of care that they aspire toward, so we should tap into this tremendous reservoir of 320 million Americans who have the energy and the ability to act as effective consumers, just as they do across the rest of the economy. So, it’s not so much sowing a seed of doubt. It’s informing patients so that they can use their intellect, their energy, their experience, and their intuition to team with their doctors to get better outcomes.

And you see that happening in other spheres. For example, at virtually every school in the country, parents are helping teachers by providing additional resources so they can spend more time teaching students. A lot of people are now do-it-yourself folks for home repairs, so they go to centers around the country, they get online videos, and they figure out how to do home repairs. In the medical profession, patients will get better outcomes if they become more engaged consumers.

SH: You advise that “[f]orging a strong partnership with a caring and committed primary care physician is one of the most important first steps you can take in protecting your health.” Isn’t that easier said, than done? Many of us are forced to see nurse practitioners or physician’s assistants instead of ever getting to see a doctor. I know that my son hasn’t seen his primary neurologist for years now, and while we very much like his physician’s assistant, it certainly has done nothing to strengthen our relationship with his neurologist, and if something traumatic were to happen, that doctor wouldn’t know, hands on, much about my son’s past few years. How do we go about asserting our need for an attention-giving PCP when the system seems to be moving further and further away from enabling such a relationship?

LM: I am an enormous believer in the value of advanced practice clinicians. Nurses, physician assistants, nurse practitioners—they all have high levels of clinical training. They are under-utilized and can be extremely important participants in a properly configured healthcare delivery system in the future. If you’re generally well, and you’re regularly seeing a capable advanced practice clinician, you can get excellent care, because those professionals are trained to identify significant clinical issues and refer them to physicians and specialists.

Our experience has actually been very positive with them. My experience with other similar professionals is also very also positive. Every major law firm in the country has a cadre of talented paralegals. There is no dentist’s office that functions without effective dental hygienists. I’m a big fan of it because I’ve seen it really work. For example, in my personal experience, as I related in The Patient’s Playbook, I had a surgery by the Chairman of Surgery at Yale New Haven, Dr. Rob Udelsman, who had, at every step of the way, Patricia Donovan, RN, who has been his right hand in doing these things for 15 or 20 years. They are a team working together; that enables them together to provide people with the highest quality care. I had a very complex surgery, and although the surgery was done by Dr. Udelsman, the entire experience could not have been as good without Patricia Donovan being at his side. I don’t think that moves us away from having an enduring relationship with a clinician; I think it moves us forward.

SH: My husband, who was diagnosed with leukemia mid-summer last year, was mis-diagnosed with three different issues over 3 months, before taking himself to the ER where he was admitted to the ICU and it was immediately apparent that he had an astronomical white blood cell count. A friend, upon hearing this, said that it’s not unusual for that to happen because doctors don’t look for cancer in an otherwise healthy, moderately young person. But in some cases, it seems, that the new “Google-fication” of self-diagnosing is bringing about a public of paranoids, so if my husband had gone into the doctor asking them to check for cancer because he was feeling rundown, would they have done so? He certainly felt like he was taking charge of his illness by making appointments with his neighborhood clinic, but he never thought it was cancer, so he didn’t push for that diagnosis. Shouldn’t we be able to trust in the expertise of our medical providers to see what we can’t see?

LM: First I have to say, I’m so sorry that your husband had to deal with a misdiagnosis. Sadly, we know that misdiagnoses, delayed diagnoses, incomplete diagnoses—these are major challenges across the healthcare delivery system. The studies that have looked at this problem find that between 40,000 and 80,000 people a year lose their lives because of diagnostic errors. So, I have to say, I’m really so sorry that this happened to your husband. As we discuss this though, what I’m concerned about is the appointments at the neighborhood clinic.

There are two ways to reduce the probability of getting a misdiagnosis. One is to trust your instincts. We all are in touch with our bodies, and we know when something seems to be more significantly wrong than it’s ever been before. Maybe it’s a level of fatigue that you haven’t experienced before, an abdominal pain that maybe you’ve experienced before but is stronger now and has been going on longer. Or headaches that are happening more frequently, and have greater pain, in ways you haven’t felt before. If you have those things, what you need to do is trust your instincts, listen to your body, and take action on it. If the physicians you’re seeing are telling you, “It’s all between your ears, there’s nothing to worry about,” or “Your gut is wrong,”—then go to additional physicians in a timely fashion until you get a diagnosis that sounds right to you.

The second thing to be discussed here is the notion of a neighborhood clinic. Particularly when it comes to primary care, I believe very deeply that you need to have a strong and enduring relationship with an individual physician. That person can see you over time and have the benefit of observing changes in who you are and how you’re functioning. They’ll be looking at you, and they’ll say, “You were here 12 months ago, and it looks to me like you’ve put on some weight,” or “you look particularly pale right now,” or “you’re generally energetic, and you’re looking down and depressed, what’s going on? Talk to me.” Those kinds of observations about who you are holistically can make a difference. They can enable a primary care physician to exercise his or her clinical intuition and identify potentially serious issues earlier.

If in fact your husband had such highly elevated white blood cell counts, he probably had some symptoms. If he had a strong and enduring relationship with a primary care physician, that physician likely would have recognized those symptoms and/or those lab results as being aberrant, and she or he would have perhaps ordered additional blood work, and made the referral to a hematologist, which is what the first person who saw your husband should have done.

You should believe in the capability and the competence of your physicians, but if you don’t—if you have reservations about them—you need to change physicians. But, even if you believe in your physicians, you need to respect your perceptions of your health and your intuition. So, if you’re feeling off, even in a vague way, and the physicians that you’re seeing are incapable of giving you a diagnosis or developing a treatment that addresses it, I suggest you take yourself to a higher level of expertise. Get in touch with an academic medical center, figure out which therapeutic area might be most appropriate, and make an appointment. Bring your medical records and have someone with fresh eyes look at what’s going on.

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ABOUT THE AUTHOR

Leslie D. Michelson is the founder, chairman and CEO of Private Health Management, a unique patient-focused company dedicated to helping individuals and corporate clients obtain exceptional medical care. You can learn more about Leslie, The Patient’s Playbook, and “The No-Mistake Zone with Leslie Michelson” podcast at www.patientsplaybook.com.

Last Night

 

The Mother Bed

Last night I put my arms around him as he lay in bed, eyes on his tablet, knees pulled up to his chest. Such long legs, getting thicker by the day, but I can still see his baby self in his skin. I’ve given him his seizure medications; I’ve washed his GTube insertion, applied Desitin, a square of gauze. I know I should tend it twice a day, but once is all the time I’ve got. I’ve dosed him with Melatonin in hopes he sleeps the night away, no tossing and turning, no cries in the night, no hours of wakefulness that have come in swaths since he was an infant.

We still share a bed even though he is eleven. You may find that inappropriate. Certainly some people do. Sure, he hasn’t had a seizure in a year and a half, thanks to the nutrition via his GTube we assume, so maybe he’d be safe on his own, but how can I know? Always our bedsharing was a necessity born out of fear. His seizures most often happened as he moved between levels of sleep. They were silent and too long, not violent and quick as most people imagine, as is often shown on TV. Instead, he just grew stiff, unresponsive. While I’d have loved to believe some kind of inner instinct would rouse me to some unusual silence across a hall, real life doesn’t often work that way. Otherwise there would be no death by middle-of-the-night fire, or while-they-slept burglaries, or children who go missing as though taken in the rapture.

What about your husband, your marriage, people ask me. And maybe I can’t explain that this is not a zero-sum game: both of us benefit from our son staying alive. The fear of SUDEP, which sounds like a cold medicine, but is how people with epilepsy sometimes die, still lingers. I have always been afraid that the one time I look away, he will suddenly disappear. Not his body, but his life. Evaporation. Ether. One time he had a seizure and I was alone with him and his lips turned blue and he stopped moving entirely, and that’s a thing that happened, and reason is no match for memory.

So bedsharing became the default, but is now a necessity because I fear the exhaustion that switching him to his own bed will bring on. When he wakes up at night, he wants a comforting hand on his back. Or a change of clothes if he pees through his night-time pull-up. Or for help finding his comfort blanket. I have grown better at falling back asleep after such disruptions, but rarely do I get a full night. When we begin to train him toward some additional independence, surely I will get even less. You may think that’s selfish, but eleven years is a long time to be tired, and sanity is a commodity I’ve learned to hoard.

I told someone today that I’d never had a driving need to be a mother, and the decision to have a baby had been more strategy than longing. On the verge of thirty, in a happy marriage with a man who deserved to be a father, I asked myself this: on my death bed, what I would regret more, not having children or having them? The answer seemed clear at the time, and so we did. (Before you ask me, we stopped at one, because he has been enough work and worry for two.)

When I hear stories of women who suffer due to childlessness, I can’t find a way to put myself in their shoes. When I hear women celebrate motherhood, they are speaking a language that sounds like my own, but the meaning gets lost in the distance between their mouths and my ear. I have a friend who has prosopagnosia, the inability to recognize faces, and that seems as good a metaphor here as any. It’s like I recognize the individual features of our common experience, but I can’t put them together to form a picture that is identifiable to me.

Simply, I don’t know what it’s like to be purely glad to have had a child. I sound cold, I know. But I can’t claim joy at having brought a child into the world who will struggle as mine struggles. That would require me to go to great length of Pollyana-ish denial, and I have far too much guilt for that. Yes, I am a better person. More compassionate, more selfless, more multi-faceted. And yes, he perfect in his imperfections. And I do often wonder when thinking about belonging, about helping him find a place in the world, if our culture is more the problem than his disabilities are. Sometimes I try to challenge people in rethinking the way they think about seizures, about special needs, that euphemism I have grown to abhor. But I would trade all of those personal gains, all of my drop-in-the-bucket activism, for having given life to a child who will be able to talk, to read, to shop, to drive, to work.

You see, I am ambivalent about being a mother, and as my child grows bigger but doesn’t truly age, I expect my feelings to remain complex on the matter. But after years of chastising myself, I now know this: it is possible to hold these two truths in my heart at the same time. There is nothing I love more than this child who I would never have decided to birth had he not appeared to me and bade me love him, like a stray at the door whose scars and ferocity are a lesson, not a reason to send it back in the rain.

I love my son most when we are quiet and I hold him in my arms and my heart, and the ache of loving him burns through me like I’ve downed a tequila shot and eaten the whole lime both. That’s not very romantic, but the visceral rarely is. Motherhood rarely is. For me, it is still poop and drool and too-sharp nails and sometimes bites and lots of embarrassment over his public behavior, and always, always, tiredness. My pride cringes as I tell you we still share the same bed. But I would take a hundred more years of all of those struggles, ironically to outlive my child whom I have always feared would die, because I have never been so afraid to leave someone I have always be destined leave.