(Linda Roper was one of the earliest members of the IC-Redwood Empire support group that eventually morphed into the IC Network as it is today. Like many patients diagnosed years ago, she suffered greatly in a medical system that wasn’t particularly kind or compassionate. She passed late February of causes unrelated to her IC and it is in her honor that I share this memorial with the greater ICN community. Her service will be held on March 8th in San Francisco. – Jill O.)
When I think of Linda Roper, I think of sunshine and sweetness and pink balloons. When Linda was in a coma several years ago for pneumonia, I visited her several days in a row in the ICU. Though she was unconscious and on a respirator, I told her funny stories and shared updates of our mutual friends but I could tell that she was also in pain.
Linda, like me, struggled with interstitial cystitis, a condition which can cause pelvic pain. So, I tried some well known pain relieving visualizations, especially “The Pink Balloon.” It’s easy to do and can help anyone struggling with pain but I’d never tried it with someone who was unconscious. So, despite funny looks from the nursing staff, I asked Linda to pretend that she was holding a pink helium balloon in one hand, floating above her bed. I then asked her to visualize all of her pain, discomfort and worries to move down her arm, into her hand and fingers and then up the string and into the balloon. When the balloon was full, we then let our balloons go, to let our pain just float away.
Of course, I had no idea if she was absorbing any of it. But when she woke up and we talked for the first time, she said “you kept talking about the pink balloon and I watched it float away.” It worked.. it really really worked and that pink balloon was one of the most powerful moments in my life as an IC support group leader. She taught me that when times are at their most dire, you can still reach out and touch someone. I just know that, in heaven, she’s passing out pink balloons to all of her IC brothers and sisters each night as they struggle with pain and discomfort.
LInda’s life wasn’t easy because she developed interstitial cystitis at a time when few doctors knew about it and many believed that it was an emotional condition. Like many others, Linda faced medical care providers who didn’t believe that she needed help and, like some, she endured unimaginable cruelty. I still remember the time she went to the ER looking for help for her bladder pain only to be told that she had a ruptured appendix. As they were rushing her into the OR, she kept saying “It’s my bladder. It’s my bladder.” Of course, they ignored her pleas and after a completely unnecessary surgery, her doctors admitted that they removed a normal, healthy appendix.
I wish that we had today’s research twenty years ago so that Linda and so many others wouldn’t have suffered such indignities. Today, we know that interstitial cystitis is actually a central nervous system nerve dysfunction, likely the result of an early trauma to the pelvis. New studies show that more than 8 million women and 4 million men in the USA alone have IC. More than one hundred million dollars have spent trying to find the cure. I’ve shared Linda’s story many times in the last twenty years to help medical care providers understand that this is real, that patients need help and should be treated with compassion.
I believe in angels and I believe that Linda is now a mighty force with angel wings sending love to her children and grandchildren. Every time I spoke with her, she always said how much she loved you. She always wished that she could have done more here on earth to help in your lives. Never doubt that she is present! She is, at this very moment, sending you love as you face the future.
But Linda is also standing guard. She wants the best in life for you and she hopes that you will have the strength, the courage and the conviction to live life fully and without regrets. And when times are tough, and when your life or pain feels out of control, she’s handing you a pink balloon too! Imagine her holding it with you… and then fill it with your worries, your discomfort and your stresses. When it’s near to bursting, let it go into the heavens where she’ll carry it away for you each and every day.
Thank you Linda for your friendship, your kindness, your lessons and your love. You made my life better in many ways. You will always be remembered and, I have no doubt that when I’m struggling, you’ll be handing me a pink balloon too!
Jill Heidi Osborne, MA
President – Interstitial Cystitis Network