• Posted by Cathy
  • 30 Nov 2008

People don’t like to see the girl who is limping around, struggling to walk, or grasping onto walls so she can take the next step. People like to see someone who is ok, so they don’t have to worry or ask if you’re ok. I hear a lot of “I feel so sorry for you” looks or people who tell me that. I would prefer not to hear it, I would rather people asked, I have no problems explaining. My new motto is Knowledge is Power. The more people know about IC, the more they will tell other people, and the will tell, and so on. Eventually it will get to someone with money, and we will get more funding, or even publicity, or fund raising. So to avoid these looks, I hide behind the face that says, “everything is fine” mask. It’s not. I have a hard time just picking up my niece and nephew (both just over a year), by the end of spending one day with them I am trying to figure out how I will walk anymore. If I don’t pick them up and play with them it kills me inside. I love the two of them dearly, right now they are the two things in this world that make me happy. It does hurt to pick them up and play with them, but I put on my mask and watch the clock to see when I can take my next pain pills. I do a lot of clock watching. I stay up for an extra hour at night so I can take more pain pills and get a little bit of relief. What kind of life is that? Having to watch the clock all the time? I live moment to moment, always waiting, and waiting. Just wanting to get a little bit of relief.

So…what is my prayer tonight? God= please help my loved ones and people I meet be able to accept me and my condition. Please help them to understand me instead of taking pity on me. Please help them to understand that just because I’m smiling doesn’t mean that I’m ok. Amen.

Written November 21, 2007

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