Wednesday, September 18, 2013

How Then to Live?

I recently watched the premiere of the TV show, Ironside, in which the lead is clawing his way through the first months after becoming a paraplegic from a gun shot. In one pivotal scene he meets with his old partner, who is clearly emotionally ravaged by what happened. Their conversation distills down to the one who stays stuck in the emotional muck of what happened and the other who has no choice but to face and deal on a daily basis the brutal reality of living. He has to get up every day and face his changed body and shattered dreams. His partner has the luxury to stay stuck wherever he chooses. Disease, illness, and injury simply don't allow for this; every time one hurdle is crossed the next one is coming. And you need to be ready. No one but yourself can ever fully understand what it is like to be in a daily battle for survival. Every day, I ask myself and I pray to God, how shall I live today? I know the only way I will survive is if I stay strong and have other people in my life.
What can other people do to help? I am hoping that after reading last week's post, and if you are still reading today, then you are ready to join me in what is quite literally a fight for my life. And it isn't necessary to donate a kidney or give up a weekend or take out a second mortgage on your home. I desperately need connection and encouragement from others. Here are a few ideas that have popped into my head:

  • Electronic Cards. For a $12 yearly membership at, in about 10 minutes, you can calendar a years worth of cards that will pop up on my computer. A small investment of time and money to bring little pops of joy into my life. Or regular cards.
  • Magazine Subscriptions or Kindle/Amazon gift certificates. $5 goes a long way. I spend countless hours laying in bed twiddling my thumbs. I need creative ways to fill this time-help me think of ideas.
  • Stop in for a short visit (always call first) or send me an email with a few pictures and a description of a recent adventure you went on. I love to hear all your news and your lives. I love pictures of your kids and news about them. My own world is pretty closed and quiet and too often quite boring. I am not the best at returning email, but will try. But it is great to hear from folks. Please don't forget about me. I am still here, just a much slowed down quieter version of myself.
  • Play WordswithFriends with me. Not sure what that is? It is an App on smartphones, laptops, etc. that is a simplified version of Scrabble. Let me know and we can exchange all the info and get to playing. Lots of fun.
  • Send me links to interesting articles you've read. If you wish send me your comment(s) on the article---maybe we could have a discussion.
These are just a few ideas. And, as always, no one has to do anything. I am just asking that anyone who is in my circle and has a connection to me to seriously consider doing something concrete to better my life a little bit. I need all the help I can get right now. I have an 86-yr old woman in my life who for the past 8 years has called me every Thursday morning just to check on me, tell me a joke, and tell me she cares. These calls last for a couple of minutes. Kind of amazing to consider that kind of commitment and dedication. Thank you Alice! Many people do other selfless acts of love in my life. If you would like to get involved it doesn't have to be expensive in terms of money or time; all I want is the human connection.

What do I do to Live

  • Make a choice every day to move forward.
  • Take naps-waking up muzzy headed and warm.
  • Relish Popsicles, ginger ale, and ice-cold melon. Redefine 'treat.'
  • Accept sleeplessness and chronic pain as seamless parts of my life
  • Find beauty in the doldrums. Warm blankets fresh from the dryer, strong fingers washing my hair, hummingbirds dancing in the begonia outside my window
Somehow, like a well-crafted crazy quilt, I put all this madness together and it starts to be semi-functional art. I can be almost proud to be surviving despite the best efforts of secondary progressive MS to tear me to shreds. The path I am rolling down is difficult and I wouldn't have chosen it. But here I am now, 47 and slowly losing ground to this disease. It doesn't have my soul or my spirit and it can't keep me from living as much as I can for as long as I can.

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