The other shoe

I was finally beginning to feel my old self again. Instead of making energy to do things, I had energy to do things. I could read books without falling asleep after two paragraphs. My attitude was improving. I actually cut the weeds for the first time this year, and put up that picture in my mom’s office that I promised to do back in December. I looked forward to weekends and workdays. Life began to be worth living again.

More than that. I came home one night about a week ago and I was thinking that really, I was about as happy as I’d ever been in my life.

So naturally the other shoe dropped.

I still haven’t come to grips with what has happened, but maybe the telling the story will be therapeutic. For background you should know that over the last nine months my blood sugar control has been crap. Partly lack of energy to do it right. Partly lack of energy to eat what I should; or to resist the temptation to not eat what I shouldn’t. Partly too busy taking care of everyone else to take care of myself. Partly lack of access to the best tools available.

All excuses, really.

Over the last nine months my blood sugars have been running in the 250s. Some days bolus after bolus after bolus did no good in bringing them back down, but most days I didn’t even bother to try. Then one night as I slid into bed, the fire started. In my feet, a tingly, electrical burning feeling.

I had developed neuropathy. After a decade of preaching diabetes won’t hurt you if you just keep your sugar down, I found that ignoring my own sermon lead me to hell. Two days later, it started in my hands.

But the neuropathy isn’t the other shoe.

I live in a crowed household, and with early fall came early flu. Rio got hit first. Then Debs. Then her mother, and finally my mother. Oddly, I didn’t get sick. Usually I’m the first to fall, the hardest hit, and the one who stays sick the longest. I chocked up my escape to the fact that nature always leaves one member of a tribe uninflicted by plague to nurse the others. I fully expected to get double-sick as they rebounded, but it didn’t happen.

I guess the cells left alive in my body after the last nine months are such tough sons-of-bitches that no common flu virus stands a chance against them.

Rio missed the first two weeks of school. The virus impacted my mother-in-law so severely her mental state was reduced to the point she became completely helpless. She couldn’t talk. She lost the use of her hands. She couldn’t feed herself, dress herself, or even go to the bathroom on her own. She still hasn’t recovered, and now either Debs or I must be with her 24-7.

But the super-flu isn’t the other shoe.

It only led the way.

The flu worked its way into Rio’s lungs. After years of not having to use an inhaler, his asthma returned. The nebulizer had to be dusted off again and fired up again. His cough was nasty and deep. We took him to his doc, who Dx’d him with pneumonia. The only question was whether it was getting worse or getting better. The doc couldn’t hear anything in Rio’s lungs and, concerned they might be nearly full of fluid, ordered a chest x-ray.

But the pneumonia isn’t the other shoe, either.

In fact, the chest x-ray showed Rio’s lungs were clear. He was on the mend. But there was an incidental finding on the x-ray. Rio’s spine had a little twist. At about the level of his sternum, his spine detoured to the right side of his body, then returned to vertical, much like the body of a boa constrictor might look like where it detoured around large knot while slithering up a tree.

Scoliosis.

Rio’s doc wrote a referral to the peds orthos at University Hospital. I called for an appointment and found that the only pediatric bone guys in the state are out-of-network for my son’s insurance. The largest insurance plan in the state refuses to contract with the largest health provider in the state.

Welcome to the world I live in every day.

A couple of weeks later, we pushed through an authorization. In the meantime, the radiologist’s report came back with the official word on Rio: Moderate thoracic scoliosis. Rio’s doctor was almost apologetic; it didn’t appear to be anything worth addressing, after all. But I decided, what the hell, we’ve got the appointment with the specialist, let’s go ahead and keep it.

I fully expected it to be a typical initial consultation. I expected them, like running a credit card, to see if Rio’s insurance was “good,” shake hands, look at the x-ray and say, let’s meet again in six months.

I was wrong. The other shoe was about to drop.

The University’s Carrie Tingley Hospital takes care of sick kids with “complex musculoskeletal and orthopedic conditions.” It’s a depressing place. The outpatient clinic has a 1950 institutional look to it, a down-on-it’s luck 1950 institutional look. It’s old and worn out. The staff were friendly, but it was a depressing place, not only because the building looked old and worn out, but so too did all the patients. Children with adult souls trapped in twisted malformed bodies. It was tragic beyond words.

First we met with a nurse who took Rio’s vitals. Then we met with a resident who gave Rio a physical exam and ordered another x-ray. She shook him up by asking about clotting factors or any other issues that would prevent surgery.

Then we ambled down the hall to x-ray, Rio freezing in a lightweight hospital gown and disposable Tyvek shorts. Three x-rays later and we were back to killing time the treatment room, looking at the archaic light box mounted on the wall for viewing x-ray films back in the days before digital. Next to the light box was a psychedelic smiley face poster. We were in the land that time forgot.

Rio was very solemn. What are you thinking about? I asked him.

He hesitated, wringing his hands, then said, “I’m worried about surgery.”

I told him with great confidence that no such thing was likely to happen and I had my money on a just-come-back-in-six-months approach.

I was about to lose my money.

Finally, the doctor came in. He briskly introduced himself, pulled a chair up right in front of Rio, looked him squarely in the eye and without preamble said, “Would you hate me if I asked you to wear a brace?”

Rio and I were thunderstruck, too surprised to reply at all. Finally I managed to wise-crack that Rio would only hate him if he ordered surgery.

“It could come to that,” said the doctor, “but I’m hoping to avoid it.”

That’s the last point I remember clearly. I’ve been in a fog ever since. I’m like the man who staggers from the car crash and can remember everything up to the point of impact, but is missing all recall of the accident itself.

I’d been rudely and abruptly transported into a parallel universe of medicine.

The twist in Rio’s spine that looked like the boa constrictor passing a knot on a tree was really the head of the cobra. The little detour was a “compensating” bend. The rest of the snake was curled up in its basket in Rio’s lower back, where his spine is bent and twisted to an angle of 38 degrees. The chest x-ray missed the main event, but the specialists had known what to look for.

It wasn’t moderate scoliosis. It much more serious, almost to the point where surgery is required. The snake had been lurking deep in the body of my perfect-looking child for several years, and time was short to change to course of the disease. He has only 2 or three years of bone growth left.

He will need to wear body armor like Star Wars storm troopers from neck to tail bone. He’ll need to wear it at least 18 hours a day. Or 21. Or 23. It depends on which of the experts we spent the day with that you listen to. The word “compliance” hung heavily on the air in every conversation. How important compliance was. How compliance would reduce the risk of surgery. How compliance would make the difference between a normal adulthood and one made up of chronic back pain and mobility issues.

All the concerns over compliance told me that the brace, called a Boston Brace, must not be very comfortable.

Then we were packed off with Google directions to drive to a place across town where Rio would be measured for his new armor. One look at the directions and I knew we’d been given a route that involved a closed off-ramp. I’d have to do some dead reckoning to get there.

We drove off in silence. I asked Rio what he was feeling, and he did not answer me. He sat, gazing out the window, forlorn. A beaten dog, all the life gone out of him. I wanted to cry. I wanted to scream. I wanted to take this away from him.

But I was powerless.

I placed a hand on his knee and we drove on through the city in silence.

At the prosthetics place, a number of gruesome trophies hung on the wall. Tiny infant-sized helmets to overcome distorted skulls. Tennis shoes for people missing one foot. Spare breasts for women who’d lost one of the ones God gave her to the pink ribbon battle.

Modern medicine. The reaper of the flesh.

I was in a complete daze. My wonderful, kind, sensitive child was suffering. I felt helpless and riddled with guilt. Should I have spotted this earlier? Was I a bad parent for not noticing the slight rise of one shoulder, the slight gap between arm and torso, the bulge on his back from his twisted rib cage? And then there was the real guilt. The guilt over the complication that I, of all people, should have been able to prevent. The doctor told me he preferred to treat skinny children. Rio’s substantial belly, a battle I’ve been losing for a decade, would make the brace harder to manufacture and less likely to work.

I had doubly failed in my sacred duty as a parent.

Then we met the tech, who to my mind was the orthopedic equivalent, of, well, me. She is to scoliosis what Wil is to diabetes. I recognized a kindred spirit at once. She put Rio at ease. She put me at ease. She patiently explained to us all the things the doctor didn’t bother to. I suddenly felt myself in the shoes of my patients—brutalized by doctors, rescued by educators.

She was bubbly and upbeat. She assured us we could do this. She plugged us into the social media world of bent spines. Blogs, support groups, online stores, Facebook. There’s a whole sister world to ours out there beyond our horizons. I guess I knew that, but I never thought much about it.

And I wanted no part of it. Isn’t diabetes enough?

She put Rio in a super tight-fitting muscle shirt that showed every lump and fold of fat on his body. She taped a sensor on his back and then began scanning him, sweeping a beam of light up and down his body, and on the screen of her computer, a 3-D image of Rio’s torso was formed in minute and exact detail. Rio’s armor would be more pear-shaped than the wedge of white plastic the storm troopers wear. Rio would need to sleep in this medieval armor. Walk in it. Eat in it. Play in it. Go to school in it. Rio was in for some rough years. Filled in off-and-on by phone, his mother cried all day at the thought of her baby locked into a turtle shell for the waning years of his childhood.

I know in my head that we are lucky. This thing has a beginning and an end. It’s not forever, nor is it fatal. It will be hard on him, on me, on his mother, and on the grandmothers. But this is not more than we can handle. But in my heart… Well, that’s breaking.

We parents would take any burden upon our bodies to spare ourselves the burden placed on our souls that watching our children struggle or suffer causes.

If I could lift this burden from him I would do it in a millisecond. But those types of cosmic choices are the stuff of fairy tales. In the real world we do not get to choose our burdens. Of course, we will make it through this. Of course, in the end, it will somehow make sense.

But right here, right now, the world is a cruel place.