"Suffering the Slings and Arrows of Outrageous Fortune"

A Very Big Deal

2 1/2 years ago, at her lowest point and most ill, Em sat in a wheelchair with Dr. Tinkle and said emphatically that she wanted out of the wheelchair and to be able to be in a production of Joseph and the Technicolor Dreamcoat that was being done at the theatre that summer.

He acknowledged her hopes and very gently told her the truth: that she probably would not be better in time to be in Joseph. But, that he would do everything he could to help her get better so she could be in a play when the time came.  Well, sadly Dr. T has moved on and isn’t around to see the transformation he promised.

But, yesterday we were able to tell the geneticist who now handles her case, Dr. Neilson, that Em is in a musical right now.  He understood what a Very Big Deal that is. He never saw her at her worst; he has only seen the new and improved Em (the post-Diamox Em), but he has heard our description of where she has been and knows enough to know what this means to her.

He said they are always wowed when they have someone come in and tell them that they are out of a wheel chair or doing something that was out of the question previously. For so long, I didn’t believe that there was any way that Em could be one of the success stories – there seemed to be so little hope at our lowest point.

It was a really precious moment after a few very long, very dark years.

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Comments on: "A Very Big Deal" (8)

  1. sheri smith said:

    So happy for everyone!!! YAA HOO!!

    ________________________________

  2. Christy said:

    I’m so happy for her. I know how very frustrating it is when you want so much to do something but the EDS holds you back. May she have many more good things come her way!!! If you don’t mind me asking does Em have strictly the type 3 eds or does she have more than one type? They’ve diagnosed me with severe type 3 byte I heaver a lot of crossover symptoms as well!!

    • Thanks! Em has only been diagnosed with Hypermobility Type (previously type 3). She probably has some crossover symptoms as well, but it all seems to be just a big mess of symptoms doesn’t it?

      • Christy said:

        You are so right about it being a mess of symptoms. I thought for sure that I had vascular because of the problems I have but the test said I didn’t! I went to see Dr. Tinkle in Chicago and he said most with vascular don’t have pain or the issues we do. I actually told my family that part of me wishes it was vascular because I could see some end in sight. I know that sounds horrible but it just gets so overwhelming when your mind wants to do so much but your body will not agree!

        Praying that Em can keep getting better and have as many positive experiences as possible!!!!

        • I do understand what you mean… It is so frustrating to have of the pain and suffering and fear every day. Fortunately, life does go on and has meaning even in the midst of affliction. It just takes some time and a lot of effort to get there!

          Thanks for your prayers and encouragement… And I will be praying that YOU get better and can have as many positive experiences as possible! 🙂

          • Christy said:

            Thank you so much for your thoughts & prayers that means more than you can imagine! I feel so much empathy for Em, you & your family because I know all the feelings that can flood you at one time. I’ve told my mom many times that it’s hard to deal with physical aspects of EDS but it’s even more difficult to cope with the emotional aspects…for me it is!

            Always know I’m here if you all ever want or need someone that totally gets how you feel & what you endure. I live by the phrases “This too shall pass!” “What doesn’t kill will only make me stronger and I won’t give up because I’m a fighter not a quitter!” I deeply believe there has to be a reason this life was chosen for me. I don’t understand it at times but it helps me get through the hardest times in my life!

            • I think you are right about the emotional aspect of EDS. The physical aspects are hard enough but the emotional pain is so profound and most people don’t understand the depth of that pain. (Of course, they don’t understand the depth of the physical pain either, so I shouldn’t be surprised!)

              The idea that there is a reason for it all, that we cannot understand right now, and that we will get stronger from the suffering is hard but so true. I find that it helps to hold on to the belief that there is a reason for it all – if I believed it was all pointless, I might go crazy!

              It helps to share with others who understand! Thanks so much for commenting!

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