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

Making a Life

Written by Katie. Posted in Challenges, Ehlers-Danlos Awareness, POTS Awareness, Teaching, Thankful

My Father-In-Law always assures me that “everything will work out.”

So far, he has been right.

My future with teaching has been extremely stressful this summer.  

Backing up, two years ago, I became too sick to teach.  I ended up having to take a full year medical leave from teaching my beautiful kindergarteners and pre-kindergarteners.  It was the hardest year of my life.  It was during this year that I was finally diagnosed with EDS and POTS, and I had to learn how to do the little things in life again, while still being able to function.

At that time, my world literally turned upside down.  I had gone from running races and teaching full-time to spending most of my time at home in a wheelchair, neck brace, and back brace.

As I slowly became better with a lot of rehab, meds, visits to amazing doctors, and many other treatment methods, it quickly became time to make a decision about teaching for the next school year.  I had come a long way, but as most POTSy’s and EDS’rs know, these diseases never go away, they are unpredictable, and they can still affect one’s everyday life, no matter how much progress you have made.

After a lot of discussions with my doctor, PT, and experiments with “working” on my feet at home, I decided that half-time would be challenging, but I thought it was something I could realistically do.  I knew I would need to work mornings since afternoons are tough for me, and that I would need to have the help of my colleagues and assistant.  I also knew that our contract allowed me to work one year in my full-time position with half-time accommodations.  I wanted to get back “in the game” with my babies and was at a point where I was having more good days than bad.

Therefore, working mornings became the plan.  The district agreed to the accommodations and I spent all last year “job sharing” with the most amazing teaching partner and friend.  For the most part, I did well.  My daily routine became this:  Teach, rehab, nap, recover…with many afternoon doctor’s appointments thrown into each week.  On days that I was struggling, my colleagues, principal, families, and assistant were always there to step up and help out.  I felt blessed that I was still able to do the job I loved with the support that I needed.

When this past year ended, I knew that my one contractual year that allowed me to stay in my full-time position, half-time, had expired.  I did not know what I was going to do.  When I left in June, my district presented me with two options: Come back to my position teaching full-time, or bump the least senior half-time teacher and I would take their job.  That meant I could possibly be required to teach say, 8th grade math (gah!) or art (ha!) or anything else that I had zero experience teaching

This is where my stress mounted.

The following is an “inside look” at one of the many conversations that I would have in my head…

“Maybe you should just try full-time…You’ve worked so hard to obtain your Montessori cert…you can’t give that up now…once you give it up, it’s gone…but you know in your heart you will be so sick teaching full time…4,5, and 6 year olds require so much energy and it’s not fair to them if you are sick…don’t you recall how exhausted and (sometimes sick) you were when you would come home at 12:30…how are you gonna last until 5:00…but you can’t pick a job you have no experience in…that would negate half-time trying to learn something brand new…but teaching full-time will give you zero quality of life since you’ll be sick all the time…and that’s not fair to Brad and everyone else in your life..but you love your kids and the families and the school…”

And so it went on and on and on…

I asked so many people’s opinions, I lost count.  I prayed every night for God to help guide me as to what was best for me.  I did a lot of soul-searching.  I drove my family bonkers.

I became angry.  I was mad at the district for “making” me choose…but later realized I was actually angry at the diseases and how they were “dictating” my professional life that I had worked so hard for.  I was mad at the fact that I had these chronic illnesses.  There were times that I even fell into the “why me” trap.

I was losing sight of EDS and POTS as “my blessings.”

I knew that I, with the help of my doctors, was the only person who could make the decision.

I worked through a lot of emotions as I attempted to come to a decision that I could live with.  By mid-July, I decided my job was too important to give up.  I decided that I was going to tell the district that I would be coming back full-time.  I convinced myself that I could beat the odds and with mind over matter, I would be able to “control” POTS and EDS.  They would not control me.

It was at this time that I went to South Bend to work out with Dr. Lavallee.  I was excited to tell him my decision, and thought, “If anyone will understand my thinking, he will.”  He works more hours than most healthy people, having Classical EDS himself.  It was towards the end of our work out when I told him my two choices, and that I thought I was going to try to work full-time.

He immediately weighed in with, “Katie, I think you need half-time. Do you think you will be able to do everything you need to do to keep your body functioning, teaching full-time?”

I was honestly floored by his response.  In my head, I was thinking, “out of all my doctors, I would have bet money that he would be the one to say go for it…”

Dr. Lavallee went on… “Let me ask you this.  Katie, what are your two biggest goals in life?”

That was a no brainer.  I told him it was to be able to maintain my health and function to live my life, and to be a Mom.”

He asked, “Can you accomplish those two things working full-time?”

I remember looking at the floor and then at him with tears in my eyes and simply saying, “No.”

Everything became clear at that moment when I was asked to put into words what I wanted the most out of life.  I finally felt my first sense of peace about the whole situation.

I went home, ready to tell the district that I would be giving up my position to choose a half-time position, whatever it may be.

I emailed our union at the beginning of August.  I first asked a few logistical questions, and then included one last ditch effort to see if I had any other options to teach early childhood Montessori, with the accommodations that I needed to be successful.

I still get goosebumps when I think of the reply I received.   It simply stated that I would be doing a job share, staying in my position, officially moving to half-time status, teaching mornings, and that HR would be hiring an afternoon teacher to work with me.  I was jumping around my house like a maniac, feeling so thankful, and so blessed, and so happy to be able to return to the job and school that I love.  I soon received an email from HR, backing up everything the union had said.

I have since reflected a lot about how much I have stressed this whole summer about what would happen with my career.  I have come to a few conclusions:  Sometimes it’s better to choose reality over trying to be a superhero. Choose faith over worry.  Persistence pays off.  Making a living is different than making a life; especially when chronic illness is involved.

I choose making a life.

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Comments (5)

  • Sara


    Good for you. Good things come to those who deserve it!
    I will be thinking of you as school begins! So proud of what you do for those you love, what you love, and what you believe in!
    You are amazing!


  • Tonya


    I’m glad this worked out, congratulations!
    Thank you so much for posting this today, especially the last paragraph. I’ve been thinking about these things, what I want to do the most and how I can accomplish them within what I have and no burning my body out. I haven’t figured it out yet.
    I’d love to read more about how you trained yourself to work out. I’ve been trying to figure out simple ways to ease back into more normal activites. Honestly, I still can’t do major things at the moment, I’m still trying to get to where i can walk or stand for 5 mins straight! But I’d like to have some sort of plan,
    Thanks Katie <3


  • Jonelle


    I am so very happy for you. You are such an inspiration to me and so many others and I’m glad our district figured that out. All the best to you this year. We’ll miss your Mom in the building, but don’t forget we are always your Cumberland family. Love you Katie!!


  • Lisa


    I am so happy that thngs worked out for you…I will miss the lunch conversations with your mom…We had discussed your situation and I wondered why the district wasn’t forced to offer you this as a reasonable accommodation…and it seems they did! Have a wonderful year!


  • Vince Houle


    What an inspiration you are!! Keep on keeping on Katie!!!


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