Friday, February 25, 2011

Think IH on Rare Disease Day

Flowers for AlgernonI was in high school when I read Flowers for Algernon and the story absolutely broke my heart. I've seen the movie, but film seemed unable to capture what Charlie's broken down language could convey. Yesterday, I had a "Charlie moment." I've decided that's what I am going to call them now, since a "senior moment" doesn't quite fit a 34 year old, or the nature of the event. Nope, I gained a great knowledge, used it, flourished in it and now, sit back, helplessly as I watch it all slip away...

It began earlier this week when my husband and I were watching the movie 127 Hours in preparation for the Oscars this weekend. My husband asked, "127 hours - how many days is that?" This is a simple question. He may have even had an answer before I said anything, all you have to do is divide 127 by 24, or decide through multiplication (or even repeated addition) how many 24s it takes you to reach 127. I said, "It's more than five days, but maybe even more than six. I don't know. Let me think about it... Could it be seven? I don't think it is seven. I think it is more than six, though."

I honestly don't think my husband even cared anymore, but throughout the movie I was multiplying 24 by six, then by five, then by seven... all in my head and never able to get an answer. I gave up and watched the movie. A day passed. Then last night, while we were driving home I said, "127 hours is five days with seven hours left over. It is not even six days. What was I talking about?" I couldn't believe this was happening to me again. I continued, " I feel like Charlie, from Flowers for Algernon."

My husband is an English teacher, so he didn't need much further explanation. You see, by career, by passion, by life calling, I am a math teacher. I have been since I graduated undergrad with a BS in Mathematics and Education. I have taught pre-algebra, algebra, geometry, trigonometry and advanced placement statistics over the course of the last twelve years. On my desk here in my office is an article from a 2001 edition Congressus Numerantium a Canadian Mathematics journal, that I was a co-author on. It goes without saying then that I should be able to tell you how many days pass in 127 hours, and I should be able to tell you quickly. However, in the last year, simple calculations seem to elude me.

It should come as no surprise to you that I am on medical leave from my teaching job, or that yesterday I began the process of filing for disability benefits. I can no longer do my job, because like Charlie and Algernon before him, I am losing the great intellectual gift that was once bestowed upon me. Whether it is due to the medication I have to take to keep my Intracranial Hypertension in control, or it is as a result of any damages the pressure may have had on my brain before I was I diagnosed, I have difficulty with some of the most benign tasks related to my profession.

This is merely one of the personal obstacles that IIH has placed before me. There are numerous others and every patient with IH has their own story to tell you. There are a lot of us out there, not as many as some other diseases and, at times, that puts us in a precarious situation. For this, IIH is deemed a Rare Disease and, in turn, does not receive as much attention as other diseases. The type of "attention" we patients desire is not necessarily some sort of media-blitz or lots of people suddenly knowing what IH is - the most desperately sought after attention we seek is that of the researchers. We would like the men and women in medical research to take some time out for IH to find better treatments, preventions, or, we hope, someday, to find a cure.

This picture was created for IHRF Wall of Hope Project for Rare Disease Day 2011.
So while you may have never heard of Intracranial Hypertension (IH) before reading this, you can know at least this for now:
  • IHave it,
  • IHate it, and
  • IHope for a cure.
It's not great, it is life-altering and can sometimes, like all chronic conditions, be a bit lonely. You should also know that February 28th is Rare Disease Day, an annual, global event to raise awareness about all rare diseases. I kindly request that you take a moment to spread the word about some rare disease close to your heart this year, and if you have none, then tell someone about IH. If you want to learn more about it, check out the Intracranial Hypertension Research Foundation - the only non-profit dedicated to raising money and awareness about this disease.

Just think IH for Rare Disease Day!

If you are a fellow IHer, well then, my friend, I know you will already be thinking IH for Rare Disease day, so I'll leave with something more: I wish you a pain free today and tomorrow!


  1. Thanks for the info.. it might suck getting older but it is way better then the alternative...Keep well!!

  2. Getting older does ROCK compared to the alternative, that's for sure!! I never lose sight of that one!

    Your pictures on your blog are absolutely beautiful!!

  3. I too have IH. Was diagnosed 3 years ago. I followed you link from the foundation's facebook page :) I totally know what you are going through.

    Your pics are pretty. Have a wonderful pain free day <3

  4. Your post put tears in my eyes. Knowing what you've lost is heartbreaking. Thank you for sharing the impact that IH has had upon you. I'm sure that it's difficult to reflect upon how much it has changed your life.

  5. Thank you both for reading my post! I hadn't realized the post made it to the foundation FB page (like a dork I was still following the old group and didn't realize the page had been created!), it was very cool it made it there.


    Applying for, and taking, a medical leave from teaching was one of the hardest things I have ever done in my life. However, in doing so, I am now able to focus on what I still have in a way that failing at work was not allowing me to do.

    I learned early, when my father passed away when I was 12, that reflecting on loss is what you make of it. I can look back on the times we had as a family of four and think how sad it is that those days are gone, or I can realize how lucky I was to have those times! It reminds me of how important NOW is :)

    Everyone's life is changing all the time, mine just tends to do so in a very dramatic fashion!

    Thanks so much for reading and commenting!

    All the Best,
    Nicole :)