The “S” curve

Drawing by the author, Shana Siegel

Dear Shana,

You are going to have two major spine surgeries. Corrective surgery for a scoliosis “S” curve to be exact. Internal bracing will be implanted and screwed into your spine and hips. All of your vertebrae except for the ones in your neck will be fused. It’s going to be fine. It’s not always going to be easy. But it is going to be fine. It will be a long strange journey. We still don’t know how it ends, but at age 37 you have zero spine related pain. You regularly climb ladders, carry buckets of paint and shift large pieces of scenery around. You will have a very physically demanding job as a theatrical scenic artist working on theater, TV and film sets with no limitations caused by pain.

Your scoliosis odyssey begins in middle school. You will sort of wear a corrective brace for a few years. The brace is a corset, custom molded to your body, made of really medical-looking blue plastic and Velcro. It is designed to be worn every night. It attempts to bend your spine in the opposite direction of your ever-worsening curved spine. If this sounds uncomfortable that's because it is. Which is why about 10 minutes after your mom helps to strap you in every night, you rip it off and throw it on the floor next to your bed. Needless to say, a brace that is too uncomfortable to actually wear is not an effective tool. There is no way to know if a different design would be more effective, but probably not. I think trying to get sleep instead of wearing that torture device will have actually been the right call.

You will have your first surgery when you are 13, a few weeks after your bat mitzvah. You are excited to get double the presents since the two events are scheduled so close together. It’s weird how little fear or anxiety you feel leading up to the procedure. Once spine surgery starts being discussed, the doctor will explain that your curve was severe enough, and progressing at such a rate that if left unchecked, your life expectancy would be about 40 years old. How does one die of scoliosis you ask? Apparently your internal organs would slowly be crushed as the spine continued to curve in on itself. There’s really not much of a choice once things are framed in this way. You are pretty practical about this. You choose not to let the idea of someone slicing open your spine overly worry you because the alternative seems worse. You are aware of your privilege as an upper middle class kid whose family has connections to the upper upper class. You thus receive, unfairly, the best medical care available. You will spend the rest of your life being aware of this, and constantly wonder what your life would be like if you were born in different circumstances. You will also be keenly aware of how this must feel for your parents who will have to be okay with someone putting knives very close to their child’s spinal cord. Dad in particular. His father had been killed by a negligent anesthesiologist during surgery to repair a torn hamstring. Mom will actually freak out at a resident who describes your upcoming surgery as being “very bloody”. This description will seem reasonable to you and you will only even remember it because mom will use it as an opportunity to vent her pre-surgery jitters at the poor young doctor. Recovery is intense but manageable. When you wake up your body will feel extremely strange since they will have moved everything around in there. Your balance will be completely different. You will have to relearn how to walk. This sounds dramatic but that part of recovery only lasts like a weak. In the hospital you will receive a large get well card made of poster board from your class. There will be a handful of genuine messages from your friends, obligatory signatures from everybody else, and a few fake declarations of love by some obnoxious boys who are messing with each other at your expense. You will be back in school in 3 weeks. You won’t be moving very fast, but you will be there.

Senior year of high school finds you as co-captain of the worst field hockey team in all of the suburbs of Cleveland. This is when you first feel the effects of a pinched nerve. At practice you will begin to notice that your hip and leg feel weird, and then a little sore, and then a lot sore. From age 18 on, you will have a constant level of discomfort. This will gradually worsen for the next 9 years. In that time you will take a lot of Ibuprofen. Unfortunately you won’t discover acupuncture until after college. It will be the only thing that really works for pain management. Make sure its real Asian acupuncture. Beware of white ladies in Park Slope. It is during this period that you discover how many bad doctors there are. You visit many of them. Some will immediately prescribe Vicodin without asking anything about operating heavy machinery and power tools which you do at work. All. The. Time. Luckily like all opioids, it makes you sick to your stomach. Your main challenge with all of these over-educated knuckleheads is that they won’t believe you about the level of your pain you are experiencing, because you are too stoic. They expect any real pain to be accompanied by a certain level of emotional distress. This is not how chronic pain works. When one lives with it for years, one begins to accept it as normal, even though it is terrible. You won’t seek medical attention at all, until things are already terrible. By year 7 of this process the lowest 3 discs in your spine (which had not yet been fused) will begin to collapse. If you visualize the profile of a normal spine it has a curve in the lower back. These curved vertebrae will begin to pitch forward. Because most of the rest of your vertebrae are fused, this forces your entire posture forward. It will feel like being stuck in a room that you can’t quite stand all the way up in. If this sounds uncomfortable, that’s because it is. At this point it will become evident to others that something is wrong with you. It will be the first thing they notice about you, and it will define how they think about you.

Around this time you will begin to look into another surgery as a solution. One of the doctors that you encounter will tell you that you should absolutely not have more surgery and more fused vertebrae because your spine won’t work properly and that you “shouldn’t take the easy way out.” You don’t say much to her at the time but telling her that she has no goddamn idea what she’s talking about will become a frequent fantasy. You wish that you could have told her that your spine already didn’t work. That you had already been through a spine surgery so you knew pretty definitively that it is not, in any way, an easy way out of anything. You also know that since you are older, recovery will be exponentially harder than it was the first time. Her main argument is that you shouldn’t go with an aggressive solution now because you will have problems in the future. You would have pointed out that it is probably safe to assume that there would be further challenges as you age whether you have the surgery or not. For these reasons, you see it as a choice between having a few good years in your twenties and hopefully into your thirties feeling strong and healthy, and alternately feeling pretty bad now and then worse later. Not to mention the second option would mean giving up the career that you are damned proud of, getting your hands dirty every day, painting sets for theater productions in New York City.

Once again you call on your privileged upbringing to access a world class surgeon to handle your surgery. This time around you will have traded a child’s feeling of invincibility for the neurosis of an adult Jew. Fortunately you will have become fantastic at avoiding dealing with your feelings and are able to compartmentalize away any real dread. Your amazing life partner of eight years will take incredible care of you through the whole process. He will sleep on the windowsill of your hospital room, manage your family, and watch all 15 seasons of ER with you over the course of your six month recovery. Normally people can go back to work three months after this procedure, but that’s because most people sit at a desk, and you climb scaffolding. Once you hit the six-month mark, you contact your surgeon to ask his opinion about getting back on the scaffolding and his response will be “just don’t fall off.” Just don’t fall off is Scaffolding 101, as no one fares well when that happens. So you will climb that scaffolding and never look back.

It has been ten years and seems safe to say that your choices will have been sound. You will successfully carry a child and will need to deliver via C-section because your hips are bolted to your spine. One in three American women give birth this way so it's not a huge deal. And guess what is harder than recovering from a C-section birth? Recovering from two spine surgeries.

The most important thing that I want to tell you is that you should trust yourself and your decisions. No one knows your body like you do. Do not linger on self doubt. Focus instead on how exceptionally blessed you are. You got this.