My mom’s mantra during my childhood was always, “Life isn’t fair!”
“You didn’t get the red cup, too bad, life isn’t fair.”
“Your brother hit you for no reason, life isn’t fair.”
As I grew up and developed my dark sense of humor, I would add, “and then you die!”
In 5th grade, I remember all of us being called to the gym, one class at a time. There was a nurse behind a curtain, and one by one she would ask each kid to bend over by the waist. They were checking for scoliosis. I don’t think they still do this but back in the day, the 70’s or so, they decided to check all the kids to try to prevent anyone having any problems in the future.
I also remember being teased in gym class because my left shoulder-blade stuck out so much. Being a kid, trying to deter the teasing, I would say, “I’m doing that on purpose!” That was my answer to everything back then. Guess what? No one caught it in me. Judy Blume was even writing a book about it: Deenie
“Judy Blume taught us all, what “adolescent idiopathic scoliosis” was, causing middle school girls everywhere to bend over and touch our toes in the mirror to make sure we wouldn’t need a back brace like Deenie. ” By CAITLIN WHITE
At the time, I’m glad they didn’t catch it early because after reading the story of Deenie and wearing that horrible brace, I figured I was much better off having surgery and being done with it. Thinking back on it now, maybe I was wrong.
In 5th grade, I also broke my tibia and fibula in my left leg. Another long story but after months in a long cast and more in a short cast, we got to know the orthopedic doctor very well. Another thing my mom always used to say was, “Stand up straight!”
I would try and try but I couldn’t. So one day, she mentioned this to my orthopedic doctor, and he had me bend over at the waist. I must have been starting 7th grade by now, but he caught it. He discovered I had scoliosis. All I could think was,
“See mom, I told you it wasn’t my fault!”
I also remember around this time, learning about Stream of Consciousness writing. I really took to it and filled a notebook once of nonsense. At the time of diagnosis and talking to doctor after doctor and friends of the family putting in their two cents, my brain felt like it was writing one long stream of consciousness to myself to handle all of this. In fact, it was very much like my first week getting diagnosed with cancer. All too surreal for a 12-year old mind and definitely so in a 45-year old brain.
I was sad and confused. At one point I thought the doctors said I have MS. MS? I didn’t even know what MS was. One of my friends at the time immediately shut that down. “You don’t have MS!” Really? I could’ve sworn he said MS??
Ok, so what was it? X-rays were done, test were performed, turned out my back was severely curved 44 degrees on top and 42 on the bottom. So, now what? We had to investigate the options and see a couple different specialists. Everyone seemed panicked but I didn’t quite understand the ramifications of it yet.
All the while, friends of the family saying, “she just needs to take the right vitamins.” What?!?
Even at 12, I knew that was junk science. My first experience with a lot of people who had to chime in and say stupid things.
Must have made my parents feel great. I remember feeling very alone, even if my parents were there, they weren’t going through this. It was my back that they wanted to stretch and pull and put screws and rods into it. The visits with the doctors were a blur. I don’t remember the doctors actually talking to me, so I was just trying to catch everything I could remember that was coming out of their mouths. I never heard, or I completely blocked out that they said I could die. As, my daughter has gotten older she’s started to try to listen to all the conversations with all the doctors she sees. We used to be able to distract her with an ipad or iphone but her blood pressure was going through the roof the last time we visited the Nephrologist. I know how she feels and wish she didn’t have to feel that way but at least I can empathize.
One procedure required that I would be in a full body cast for six months and if I moved or got bumped, it could ruin the whole thing. That didn’t sound good. Knowing my luck, even at that early age, I knew that wasn’t the right option. All these images kept flashing through my mind. Bits and pieces of things the doctors would say and I had no idea how to make head or tails out of them.
The other procedure sounded much better. 10 days in the hospital and then a body cast just above the chest down to my hips for six months. I could still wear clothes over it. This was important because my Bat Mitzvah was coming up. I begged the doctors to at least give me the ceremony part without the brace. That was important to me, not necessarily making it through the surgery. After everything was decided, I somehow got confused and for years and thought I had the Harrington procedure done, which was very popular back then, it wasn’t until many, many years later that another surgeon corrected me and said I had the Loque procedure done. I even did a whole science project on my back and no one realized it was wrong. Who’s going to question the girl with rods in her back?
I recall my mom being really nervous before the operation. I didn’t understand why. All I heard in our meetings with doctors was that the worst that could happen to me was a possibility of being paralyzed. My father was never into many sports except bowling, ping-pong, and skiing. He had gotten my brother and me into all those “sports,” but around that time, we had formed a bowling team, called the Three-M-Strikers. Marni, Matt (my bro) and Mario (Mario being little 6-year old).
We won 1st place in our league that year. Unfortunately, Matt and I developed strep throat and couldn’t be there to pick up our trophies and celebrate. All I kept thinking was how do you bowl while in a wheelchair? So, I guess my mind was protecting me from getting too nervous, if the worst thing was that I would be paralyzed. Funny how things stick in your mind. I didn’t even ponder about being paralyzed and how horrible that would be. It was all about the bowling.
They told me if anything goes wrong, that they will wake me up and ask me to wiggle my toes. I remember this clearly!
What’s the first thing they did when they woke me after the surgery, not telling me the operation was over, no “how are you feeling?”….
“Marni, Marni wiggle your toes!”
Freaked out beyond words, I tried my hardest to wiggle my toes, but slowly, I began to realize that I was laying on my back and that the operation must be over. Ok, one sigh of relief. Then, I saw my mom in the distance jumping up and down waving at me! I must be ok.
Pushing me back to my room, I remember hearing my parents say, “Watch out for that wall!” and then bam, the orderlies crashed my newly stretched back right into a wall. Doh! (Way before Homer Simpsons time)
After all that, I was still in quite the daze, but I distinctly remember doctors telling me that I couldn’t get MRI’s or CAT scans because all the metal would rip out of my skin. I may or may not set off alarms at the airport. Random warnings but I should be fine from now on. I could never be a gymnast or do a summersault, but I should have a healthy life with a whole mess of metal in my back. To this day, radiologists are always shocked by all that metal.
This was my first experience knowing that something was wrong but no one really listening until it got so awful that I needed major surgery. I don’t understand why it takes us, women mostly, to trust ourselves and our bodies but I have faced these kinds of problems throughout my life. My back was never really the same after that.
I always hurt, especially in my upper left shoulder blade. Every time the scoliosis doctor X-rayed it, he said it was nothing.
Here’s my first experience of having doctors not tell you what can go wrong down the road. Maybe they didn’t know, perhaps they just want you gone from their service, but no one warned me that my back was so rigid in those rods and screws that I could develop Osteopenia or Osteoporosis. That the bones would one day crumbled from the slightest thing.
Quess what happenned when my twins were born….
Two months after having these incredible creatures, I put my son down in his car seat for a second to readjust my hold on him. As I picked him up, I heard a crack in my back! Kid you not.
The worst pain I ever felt. I went inside to lie down for a second. I couldn’t have broken my back? How is that possible?!?
I was breast feeding at the time, so I didn’t want to get on pain killers. I just didn’t go to the doctor, again because I figured they couldn’t do an MRI or CT scan so what’s the point?
The first month was horrendous but somehow I got used to it.
I tried some alternative things that I knew wouldn’t work but it
seemed like my only option. After about eight months, the kids
started to ween themselves and I was turning into a little old woman with an extreme hump on her back and I couldn’t stand straight anymore, for real!!
I went to one doctor and he did an X-ray and MRI, apparently now I could have them, although they do blur things a bit.
He said, “I don’t know how you could break your back and still be walking around.” but when the films came in he stared at them and said, “Well, I see this almost healed break in the middle of your back.”
I say, “That’s it!” (Dumbass)
“Oh, I don’t do these surgeries, there is too much blood loss.
There’s only a couple people around town that do this, I’ll give you there names.”
The first guy on the list says, “Oh, we need to redo your whole scoliosis operation, from top to bottom.”
I’m thinking, are you kidding me?!? Next?!?
Next up, Dr. A at Cedars-Sinai. Apparently, he had seen my films the previous day from the previous doctor, so I guess I had the right man for the job.
He actually trained under my original scoliosis surgeon.
Long, long, long story short. I finally got fixed up in 2011, over 2 years after I broke my back. The worst surgery of my life.
So painful but it was effective. First time I had a surgery that I felt I could really die. It was actually, 2 operations spread apart by a couple days. I had never been away from my babies and I insisted that they come to the hospital, no matter what.
I survived all that and then my mom’s voice came into my brain again, “Life isn’t fair….” I think it was 2013, but I was sweeping up some papers from the floor and bent a tiny bit to pick up the dustpan. Guess what I heard….crack! I knew it was broken again. We had plans to go to Legoland the next day and I wasn’t going to let this stop me. I had run out of pain killers, and desperately tried to reach my doctor the whole day to get a prescription.
Again, I managed to make it through an amusement park with another broken back.
On Monday, I set up an appointment with Dr. A. They left the door open while he looked at the X-rays. I could hear him say, “What did she say she was doing when this happened?”
Yup, I broke the metal and the bone. My back is like a safety clip.
You keep bending it back and forth and eventually it snaps.
Didn’t tell me that, either!
Luckily, no surgery. Just another back brace for a few months.
Everything healed and now I’m afraid to even ride a bike, so I bought a tricycle. I’m afraid to do anything and it’s horribly sad because I liked bike riding and skiing and stuff like that but I certainly don’t want anymore surgery on my back or wear any braces. After my last follow-up visit with Dr. A, he said, “Someday, let me fix this upper shoulder-blade for you.” NOOOOO
For 20 something years, I knew that was screwed up. Why couldn’t anyone admit it? Why make me feel like a complainer?
I hate that doctors do this to us!!!
And to think this isn’t the end of my harrowing stories of doctors, operations or “Life not being fair…” because now I’m right,
it isn’t fair and I am going to die.