Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

My Say

Written by Katie. Posted in About Me, Challenges, Favorites, Memorable Experiences

I feel like there is a time and a place to tell certain parts of your “life story.”   Sometimes, the time just does not seem right.  I have realized that this is okay, and often, the time will present itself when it is right and meaningful.  That is what happened to me this week.

When I was 17, something happened to me that changed my life forever.  I have always wanted to keep this part of my story personal…private.  It is not that what happened to me was, or is a secret.  In fact, most people who know me well, know what happened.  It was not something I was ever ashamed of or had a difficult time talking about.  But it was a part of my story that I worked hard to put in the past.  Furthermore, there really never seemed to be a purpose, or a benefit to telling the story in a public setting.

I also am fully aware that people are entitled to their opinions, and I did not want to be the subject for judgement or negativity because of how I chose to handle the situation.

Basically, I had no interest in putting this part of my life story out there.

That is, until this week.

As many of you know, I was a gymnast since I was three years old.  I grew up as a gym rat, spending multiple hours a week in the gym doing what I loved the most, with a group of people who became part of my family.  As I became more and more competitive, my goal, even dream, became going to college on a full ride scholarship to do gymnastics.  When I was 17, I won the level 10 state meet in my age group, and was on my way to regionals, and then hopefully on to nationals.  Things were coming together in the gym and at meets, and I was feeling like 1999 was my year to finally represent the US at Nationals.  During this time period, I was being recruited by Towson, Brown, Rutgers, Eastern Michigan, Western Michigan, The Air Force Academy, and Michigan State University (my dream school of choice).  I was excited for what lay ahead.

A few days before regionals nothing was going right in the gym.  It was just one of those days.  I was on bars when it happened.

I was doing a skill called a Gienger where you let go of the high bar, flip and do a half-twist, and catch the bar again.  But on this particular day, I kept missing the part where I was supposed to catch the bar again.  I fell on my face over and over again, becoming more and more frustrated.  On about my 10th attempt, I did a big no-no in the gymnastics world.  As I started to fall on my stomach, I put my arm out in front of me to catch me.

Crunch, pop, crunch was all I remember.

I knew at that very moment that I was done for the season.  No regionals. No nationals.  And most likely no more recruiting.  I remember crying uncontrollably; not from the pain but from the fact that I was certain that my dream had just gone down the tubes in the blink of a eye.

Anyways, in the days that followed I learned that my elbow ligament was “shredded” and I definitely needed surgery.  I was right.  My season was over.  I decided to put up with the pain and wear an elbow brace to get me through the rest of the school year.  I had surgery right after I finished my junior year.

The same surgeon who had scoped my knee a few years back, was also going to reconstruct my elbow.  The plan was that he would take my palmaris longus tendon from my wrist to repair my elbow ligament by using it as an anchor to hold the ligament together.  I was told that from start to finish, with surgery and physical therapy, that I should be back in action in the gym in three months.  I remember mentally calculating the time, and feeling a burst of hope that I would be ready to compete for my senior year season.

I recall going in to surgery with the attitude, let’s just get it over with already, so I can get back in the gym.  I had colleges to visit, and was still holding on to the dream of competing on a scholarship for a university.  Waking up from the surgery, I remember nothing too eventful.  I was told that my elbow was in worse shape than they thought, but that the surgeon thought it went very well.  It was in the days that followed, that I kept remarking on how tingly my arm and hand felt.  I also kept remarking how I could not feel my fingers.  In a post-operative check, I was told that my nerve was probably bumped during the surgery and that was most likely the reason why I was feeling less sensation and so tingly.  However, the days of experiencing these symptoms turned into a week.  And then two weeks.  The tingles and shocky sensations along with the fact that I could barely move or feel my hand got worse.

Panic had set in.

I remember it like it was yesterday.  I was laying on my Mom and Dad’s couch icing my arm, when I just burst into tears.  I knew in my heart that something was very wrong.  I asked my Mom to put something in my hand.  She grabbed a little stuffed pig that was next to her and I tried with everything I had to close my hand around it and squeeze.  My hand just laid there. My fingers would not move.   My Mom was on the phone in seconds, and I was back in the surgeon’s office within an hour.

The surgeon came in and did a few tests.  He also had me try to squeeze his fingers, but I still could not move them.  He told me had to step out of the office and he would be right back.  What seemed like an eternity was probably five minutes.  When he came back in, he said to me, “I need to send you over to the hospital for nerve studies.  I think I may have made a mistake.”

I could go on and on about the nitty-gritty details of everything that transpired after “the day” I found out my life had changed forever.  Instead, I think it’s best for me to stick to the basics.  I was immediately sent from my doctor’s office to the hospital for an EMG, or a nerve test.  It did not take long for the test to show I had major nerve damage in my hand and arm.  The thinking was that the median nerve was cut at some point during my elbow reconstruction surgery.

Larry, my savior doctor, sprang into action and began to search for surgeons who had dealt with a cases like this before.  It was not long before the head of reconstructive hand surgery at the Cleveland Clinic agreed to see me and take my case.  I saw the amazing Dr. Hendrickson, and he immediately scheduled the first of three surgeries.  The plan was to reconstruct my hand so that I would be able to move my fingers again.  He also planned to take a piece of nerve from my leg and graft it into the spot where the nerve was thought to be cut.  This would be reconstructive surgery #1.  I remember waking up from the first “fixer” surgery and commenting to the nurses that I did not feel any pain in my leg.

This is when the big bomb was dropped.

My median nerve had not been cut.

It had been stripped, or in other words, removed from my hand to my elbow.   I had happened to be a person who did not have a palmaris longus tendon, so my median nerve was mistaken for the tendon, removed, and used to anchor my torn ligament.  Being a nerve, it died when it was put into my elbow, and therefore I learned that my elbow ligament was also still shredded.

Because of this news, I started to process what it all meant for me, my life, and my future. 14 years of gymnastics was over just like that.  Any hope of competing for a university on an athletic scholarship was gone.   I did not know if I would ever be able to use my arm or hand again.  I was told that I had many more reconstructive surgeries ahead of me along with years of occupational therapy to retrain my brain to learn how to use my arm again.

At 17, it was a lot to take in.

My first step was to find a psychiatrist.  I knew I needed to for my sanity.  This was the beginning of my time with someone who has since become one of my heroes…Dr. Rosen.  I still see him to this day.  I also underwent more surgeries at the Cleveland Clinic with Dr. Hendrickson and an orthopedic surgeon~During one, my 4th toe tendon was taken to anchor and fix the original elbow ligament injury.  The stump of the nerve where it had been cut, was drilled into my bone twice in order to reduce the shocks and electricity I was getting throughout my body.  I had more tendon transfers in my arm and hand.  Throughout this time, I also began intensive occupational therapy.  Because my arm and hand had to be completely rewired, I had to learn how to use them again.  I ended up spending 7 years doing occupational therapy with a certified hand therapist.

I know what most of you are thinking.  It’s something I am always, always, ALWAYS asked when people find out this story.

Did I take legal action?

This is something that has always been difficult for me to talk about…Something I have always preferred to keep private until now.  The answer to that question is we tried.   I was a minor when everything happened so my Dad mainly took care of everything besides the parts of the legal process I needed to be present for, like my deposition and to answer questions my Dad was unable to answer.  I recall thinking when we decided to sue that, “I am not this type of person.  My family is not this type of family.”

However, in hindsight, I realize now, it was something I needed to do~for my rights, to advocate for myself, and to try to secure compensation for a college education that I was on track to receive from a collegiate gymnastics scholarship.

However, I also learned that taking legal action is an extremely stressful process, where often my identity and integrity was questioned.  It was not an easy thing to go through.

Especially when we found out that the doctor who had made the mistake was protected by governmental immunity because he worked for a research institution at the time.

Despite the fact that I had amazing lawyers who fought for me night and day for years, it turned out that my case did not work out in my favor because of this governmental immunity law.  In order to sue, my lawyers had to prove that the surgeon was grossly negligent.  Because gross negligence includes the terminology “willful intent,” it had to be proven that the doctor made the mistake on purpose.  I ended up losing my case because the judge made a determination that my surgeon did not intend to hurt me.  While the judge did conclude that the doctor was negligent, unfortunately, she did not find him to be grossly negligent.

It was honestly a devastating blow and a lot to wrap my head around.

So, this brings me to why I finally wanted to tell this story.  Last week, my former lawyers called me to let me know that currently in Michigan, there are laws that could be passed any day now to provide all doctors in the state of Michigan with governmental immunity.  Therefore, the only way that someone would be able to sue a doctor no matter the mistake, if passed, would be by proving gross negligence.

Sound familiar?

Apparently my case has been published and discussed over the years numerous times with lawmakers as an example as to why there should be no such law(s).  My former lawyers explained to me last week that my case is very “well-known” in the Michigan legislature.  However, they called to ask if I would be interested and willing to put a face to my story, and present first-hand to the Michigan Senate what happened to me and how it affected my life.

I did not need to think twice.  I immediately agreed (forgetting for that brief moment that I have an extreme fear of public speaking) and told them I would love to do anything I can to prevent others from going through what I went through, because of the governmental immunity law.

So, Tuesday is the day.  One of my lawyers will be discussing everything with me tomorrow about what to expect, how to present, and all of the other ins and outs I need to know to be prepared.  Then on Tuesday, I will be going with him so that I can give my presentation to the Senate.

It is a funny thing to me that all of this is happening now.  Just last month, I discussed with Dr. Rosen how I no longer have any bitterness towards the doctor or the situation.  Bitterness takes too much energy.  And Lord knows I need energy.  I would rather not waste it on things that happened in the past.

Instead, it is my hope that by sharing my story, I will be able to possibly change these lawmakers minds to keep what happened to me from happening to anyone else.

And, yes, I have thought about the reality of not being able to change these lawmakers minds, and what I will do, and how I will feel if that happens.

I have decided that no matter what happens, I will have the peace of mind, knowing I tried by taking the opportunity presented to me to try to make a difference.  I will also try and find other ways to continue fighting and advocating.

As people say, “I will finally have my day in court.”

On Tuesday, I will finally have my say.

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Comments (8)

  • Krystin

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    WOW! The phrase “everything happens for a reason” seems so fitting for this situation. I know this whole ordeal has been so difficult for you, maybe your experience and your words will help prevent another person from having to go through what you did. Good luck on Tuesday! I’ll say an extra prayer for you, that all goes well!!!

    Reply

  • Susan

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    Wow…. just wow. You continue to amaze me. Go get ‘em.
    I know that for you personally, it might not change the physical damage, but you’re giving a voice to so many others as well. And maybe this will bring some more healing to you – just being able to have your say.

    Reply

  • Meghan

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    Love you, love you!

    Reply

  • Gabe Johnson

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    Katie, of course I remember when this happened in high school and how scared we all were for you. I didn’t know what has happened in the years since, but I knew that that surgeon was immune from liability and, for my part, I have told EVERYONE I KNOW to be sure to stay away from him.

    I’m assuming you’ll be testifying before the Health Policy committee. There are some good and thoughtful lawmakers on that committee and I hope that they won’t adopt this proposed legislation and subject injured people to meet such an insurmountable burden as gross negligence. You go in there and do what you can and hopefully your story will affect the process. Good luck, sister.

    Reply

  • audrey jaskolski

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    Katie you truly are amazing! You are so strong, I don’t know how you do it! You are someone that people should strive to be like. Good luck on Tuesday! I’m sending my love and support!

    Reply

  • Bree

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    Katie,
    Thanks for sharing your story. You are such an inspiration to many people. I am so glad for you that you finally have your chance to do something for the good in this terrible situation. I will be praying that everything goes well for you.

    Reply

  • Sara

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    Woah… Did that ever bring back memories. I just shed a few tears again. I know you did well today, Katie! Live you! I am unbelievably proud of you!

    Reply

  • Sara

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    Love you, I mean!

    Reply

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