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 Hallmark.com, 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.
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.