Trading Abilities: Developing an MS Learning Tool to Reflect & Lower Anxiety

  • I'm having a really rough time. You know when you have something to say but can't remember the right word? You know that perfect word exists, it's on the tip of your tongue and you just can't spit it out. Frustrating, right? Well this is like that, only much harder.


    In this case I can't think of 200 to 800 words (depending, of course, on the length of the essay that I can't seem to write!). I know what I want to say - something good about having had MS for more than 22 years and how I have talents that I would not likely have found if I didn't have MS. I want to talk about how my life is richer and more satisfying than I could have imagined when I was so casually given this label. And the hardest part is trying to make it funny. It helps me to laugh at the challenges of MS. Not an easy task, all things considered. But luckily I crack myself up and that is perhaps my favorite coping mechanism. So all I feel now is total frustration about the word thing and that I have no possibilities to make myself laugh.  And that's when things get ugly. Because when I laugh, I fill up the space that is otherwise filled with fear and anxiety.

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    My husband has tried to help.


    "Just tell them how you came up with the idea for MS SoftServe website that will help everyone with MS to learn about their version without unexpected frightening information. Talk about how it will be the first site that will be all about education with no advertising or ulterior motives; one that will be customizable so that the learners can control what and how they want to learn;that it's active learning and it allows them to choose preferences that will give them control of how they get the information so they understand it and that they will remember it for the long haul. Tell them how this resource will help them teach friends and family about their own unique version of MS. It will help everyone be more comfortable because they will understand what you are going through."


    I tell him that I just can't launch into this explanation out of nowhere. I need to find the perfect words to show them that this will be an amazing tool for learning about their own version of MS. That it is completely customizable; Now how am I going to do that??


     "You can always provide a link to the MSSoftServe blog so that they can read about it themselves, or they can watch the YouTube video that explains it."


    If it is so easy, you do it, I yell at myself.


    So then he says, "Talk about your personal blog and how healing it has been to write about your experiences with MS and to connect with others who relate and laugh at what you've written. How you did not even know you could write before this blog. And that you had no idea what to do with your life and in a few short years learned how you heal through your writing and have created this incredible site that will change how people with MS learn on the Internet. That the idea grew from your scary beginnings with this disease, which inspired you to make learning tool that is less anxiety inducing and a more effective tool for everyone with MS."


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    I sit wondering how will I explain the irony that a disease that limits my ability, helped me to find abilities I had no idea existed. With all that I can't do, I've found things I never knew I could do. I can't help but to consider how lots of people living with MS have found new strengths and abilities they might not have known without it. Maybe there are some who haven't even stopped to think about it. I mean, living with these symptoms can be so distracting!


    So I'll let you know what I come up with. Check for a post after 3am. That is when I can think clearly and find the missing words.




Published On: September 10, 2010