Friday, November 6, 2009

11/6 A Story To Which We Can Relate

I was interested in this young woman (Desiree Jennings) who ended up with a severe brain problem as the result of a flu shot. I find we have much in common with people who end up with "fluke" disabilities in the middle of lives they loved.

Like Jennings, we've also been the target of several ugly written attacks as a result of our media exposure. I particularly relate to her reflections about how day to day life feels to her now. It is a challenge to live in a feeling of success rather than of failure, but I believe we'll continue to find the way. Thank GOD we're progressing rather than worsening, as is this woman's case!
AOL Health: How were you feeling before you got your seasonal flu shot this year?

Desiree Jennings: I was feeling great, very strong and healthy. I had just started training for a half marathon and was up to about seven miles by the time I went to get a flu shot...

AOL Health: How did you feel in the initial hours and days after receiving it?

Jennings: I felt fine over the next nine days [after the shot]. On day 10, and on my two-year wedding anniversary, I became very ill with a fever, painful body aches and nausea. From that day forward, everything quickly went down hill.

AOL Health: Can you describe your symptoms...

Jennings: The symptoms started with the inability to talk and walk normally...That is when I began to notice that stimuli, such as a loud noise, bright lights, reading, or even eating, would worsen the symptoms and throw me into violent convulsions. The symptoms continued to worsen and my health deteriorated even further to the point where I could not move my tongue to eat without going into a convulsion or seizure.

AOL Health: There have been some rumors online about people wondering if your symptoms and one of your initial diagnoses, dystonia, have all been a fraud. How have you reacted?

Jennings: I have been appalled to say the least. I have even received threatening e-mails from another well-known person suffering from dystonia. I have never heard of the disabled harassing the disabled.

I was a couple months away from a promotion at work, had just made the Redskins Cheerleader Ambassador team, was celebrating my two year wedding anniversary and had recently paid off all credit card debt and car loans. My perfect life has now been completely turned upside down. I am now on short-term disability, my paychecks have been cut, and will be cut again in a few weeks, and we are paying thousands in out of pocket medical costs.

What incentive would a person have to completely change their life for the worse? I always told myself that if I ever were to become well-known it would be for something I accomplished, being the fastest runner or best editor and writer, not for being the most injured or a one-in-a-million victim. That is not an accomplishment, in my opinion, it's a failure.

AOL Health: How has your work and home life changed since getting the flu shot?

Jennings: It has been turned upside down. I worry that I may never be able to return back to my career that I have cultivated, grown and cherished since I was 18 years old. And my home life is a frenzy of activity and stress -- dealing with appointments, treatment options and media, all while simply trying to find normalcy in my new day-to-day activities.

AOL Health: Has your idea of your future changed?

Jennings: My idea of the future has definitely changed. All the things I worked so hard to accomplish and obtain now seem mundane and meaningless in the whole scheme of things. This injury has opened my eyes to so many things I was too busy to stop and pay attention to before. I have received so many letters and e-mails from people I have never met that speak of similar injuries and neurological issues and my heart goes out to each one of them. I wish I could just get better so I can help them.

Chuck's humor, subtlety and canniness are in more evidence every day. We have a daily set-up now that will enable me also to find my bearings and balance. I wasn't called to sub today so I'll be writing the introduction to my newest book project, going to the gym and catching up on housework, paperwork and grocery shopping, and seeing about ways to print Benefit Fund materials and getting them mailed. We are now tapping the Benefit Fund for Day Care, trainers, and a massage therapist. We'll see where we are over the next 50-60 days. We'll be staying in our home at least until the beginning of the year.

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