Tuesday, May 3, 2011

One Healthy Day

What would you do with one day of perfect health?

The question was directed to my friends with neuro-immune disease, for whom one day of health would be one day of relief from constant pain and other debilitating symptoms.

These are folks who, on most days, feel lucky if they can get out of bed or out of the house. They have to budget their energy carefully---choosing for example whether to wash the dishes or vacuum, and knowing that doing dishes or vacuuming will leave no energy for cooking. If they go over budget, they pay interest with increased pain for days.

So what would they do with a whole day of freedom, and no bill to pay afterward? Live it up in Vegas or Monte Carlo? Sex and drugs and rock and roll? Hang out in bars with Hollywood stars?

The answers were very consistent:

I would spend time with my family and friends.
Go hiking in my favorite park.
Go for a swim, out to lunch with friends, art museum, then dinner and dancing with a theoretical somebody.
Take my kids to the beach.
Walk my dogs, visit friends, go to a salon for a real haircut.

Not the high life, just a taste of normal life, was all these people wished for, without exception.

May is Awareness Month for Neuro-immune Disease. This month, I would dearly love to see more healthy people get involved in our cause. If we have to do all the advocacy, then the dishes, vacuuming and cooking are never going to get done, much less a beach day with the kids or a walk with the dogs.

Remember, every day of health may be temporary. Neuro-immune disease can strike anyone, at any time.

The new flyer from the WPI lists these statistics:

• Anyone can become ill with a neuro-immune disease 
• 1 in 300 suffers from ME/CFS 
• 1 in 150 suffers from fibromyaligia 
• 1 in 110 children are in the autism spectrum 
• Lyme disease is a fast growing epidemic (many sufferers develop a chronic illness) 
• Hundreds of thousands of armed services members have Gulf War Illness
Please consider printing out copies of that flyer and posting them everywhere. Your local cafe, bookstore, church, community center, library or bus stop might be the place where someone sees the flyer and decides to help.
My two kids and I, if we had just one day with our health back, might savor some time hiking or kayaking. I'd love to go dancing. I confess I might be tempted to waste part of it catching up on the dishes or the vacuuming, but the outdoors and dancing would take precedence if I had only that one day.
How about if we had our health back for good? Me back at work, both my kids heading for college, in summer we'd take that road trip we always wanted across the continent... ahhh!... but I would also make time out of that busy, healthy life to help others who were not so fortunate. 
Yes, I am trying to guilt you, here. Pleeeease, can I get away with a little guilting, just this once? Yes, I'm wheedling. Yes, yes. I want you to actually do it. 
Print out the flyer and post it in at least three places, please.  Then feel good about having done so, and enjoy your healthy days. 

EDIT: WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012


  1. Thank you, Kassy, for writing this wonderful piece. Printing out the flyer, and posting it in three places, sounds so easy, but in reality it's impossible for so many people with neuroimmune disease. We do desperately need help from healthy folks!
    P.S. I'm in the "dog walking" group. Would love to be able to make it to the top of the hill behind my house again, with my buddy Dusty.

  2. Anonymous03 May, 2011

    If I had one good day (and didn't have to worry about collapsing in public), I would take my two boys on a shopping spree at Toys R Us, then out to a movie. And then come home and have pizza on the deck and watch the sunset. It would be the simplest version of heaven.

  3. pasear por la playa y la tengo muy cerca ,el mar siempre ha estado vinculado ha mi vida,solo pido un dia bueno para poder ir.....

  4. Anonymous04 May, 2011

    One of two things: either hike up a mountain and just spend hours looking down at the view, or spend the whole day walking upstream through a creek. As I type this I have thought of like 20 other things though.

  5. Kari, so true, it's a huge challenge for us. I managed to post the flyer in three places but it was the first time I'd been able to get out in a couple of weeks. After, my arms felt like they were going to fall off, just from driving a couple of blocks. If I could push that hard to post three flyers, you'd think a few healthy people could do it, too.

    I want to see some comments from healthy people saying they've done it.

    I'm loving hearing more One Healthy Day dreams. Sarah, that's where I got the name Creek. Walking up and down a creek, exploring and enjoying, was one of my favorite pre-illness activities.

  6. A friend from Facebook asked me to post hers:

    Veevee Bloget
    i would go for a morning jog first. i would go to work for a few hours. then i would go to a museum. i would go on a shopping spree at westfield london walking everywhere! (i usually hire an electric wheelchair). i would finish going to my nans, taking her dog out while i have another jog and then get my partner to pick me up on the motorbike and go on a ride out to countryside to lie on a blanket in the grass and watch the stars talkin to him without worrying about running out of energy. then home again :)

  7. Anonymous07 May, 2011

    i would ride my bike to school with my son, then we would go for a swim at the local pool, then we would play baseball. then we would come home and have a family dinner together. then we would all lay on the couch together and thank god, wpi, and judy m for making this mom well enough to have that kind of day with her son.

  8. If I had one free healthy day, I would love to go for a long walk at sunset or maybe get involved in some beach vollyball. I would want to be active. I miss being active!!!