“Never Cut What You Can Untie”
If you get a knot in your necklace, most of us don’t cut it. The necklace would be ruined. Many times I get frustrated at knots in plastic bags and then I do reach for the scissors. But I think Josephy Joubert’s quote, an essayist in the 18th century, was about relationships. It’s a great quote for quarreling families. It’s a great quote for troubled friendships. And, it’s a great quote for everyone. Hurt feelings, heartaches, and arguments with people you love can lead to knots. Things escalate. People stop talking to each other. Time goes by. Revenge, bitterness and isolation result in broken relationships that seem like they can never be mended. I called a good friend of mine yesterday, who was celebrating her 80th birthday. Reflecting on her life, my friend said her sister-in-law once told her something she never forgot, “Hurt feelings are a waste of time!” It made an impact on my friend because she realized there was a lot of truth to it. I am blessed with good friends. Once when I was struggling with hurt feelings, another friend of mine suggested I draw a line in the sand and step over the line. Once I stepped over the line, I could leave all of the heartache behind me and never pick it up again. He also told me I could gulp a shot of good Irish whiskey if I needed it to step over the line. Holding grudges was something my mother never did. She used to say when you did that you were only hurting yourself, “Life is too short to waste it.” I wonder now if it was because she was a teenager when her mother died. Mom saw a lot of people she loved die of polycystic kidney disease (PKD) before dialysis and transplantation and before Mom began her battle with PKD. Maybe that’s why she was so wise. Estrangement from someone you love reminds me of another quote. “Be careful what road you’re traveling down, you might get there.” Completely alone. Life – it is precious, short and absolutely Divine. It is powerful to take responsibility for your feelings. Incredible courage is required to forgive and live. It’s not for wimps. By the way, I didn’t gulp a shot of whiskey when I stepped over that line in the sand. With alcoholism rampant among the Irish, I didn’t need more problems. But, I did let it...
Read MoreHappy Birthday to my baby sister, Janice!
Happy Birthday to my baby sister, Janice. Despite being the youngest of my sisters, Janice is much taller than me. And, not just in height. She stands tall in handling what life dealt her: Polycystic Kidney Disease (PKD). Not once have I ever heard her ask, “Why me?” She never whines, complains, or has temper tantrums about the difficult things she has faced, the pain she has suffered, or the way PKD has affected her life. Ahem! The Reluctant Donor has taken note of this fact. PKD does affect Janice’s life with all its annoying nasty facts. Janice, though, carries on and points out the ways PKD has made her stronger. Yes, she’s had great teachers, as I outlined in my book, The Reluctant Donor. But, Janice stands just as tall and just as strong as those who have taught her how to not let PKD win. Her successful kidney transplant almost twenty – yep twenty! – years ago have given her years we may not have had. We will be forever grateful for her anonymous donor and want to scream and shout about the tremendous gift it is. But, there are many hardships no one quite understand with a transplant that long ago. A whole caboodle of issues Janice battles with her quiet way of never whining. As our friend and fellow PKD fighter, Patti Ruffin, points out, “A transplant is just a band-aid. We still have PKD disease.” Remember Patti Ruffin’s wise observation if you know someone with PKD, or someone with PKD and a transplant. But, most of all, learn from Janice’s grace. I...
Read More“You grow up the day you can have the first real laugh . . . at yourself.” Ethel Barrymore
One of the things I miss most about my mother is her deep belly laugh. She had a sort of gravely voice from her years of smoking. Many times when she answered the telephone, the person calling mistook her deep voice for a man. Instead of being insulted, she laughed it off, saying her voice was sexy like the movie star, Lauren Bacall or Marilyn Monroe. Mom never took herself too seriously. Unlike her very serious and worrywart daughter – my serious view of life exasperated her. Mom only had a high school education. She never thought of herself as an intellectual. One of her challenges was spelling, especially the word “coming”. “Suzie,” she asked, “how do you spell ‘coming’? Is it c-o-m-e-i-n-g or do I drop the ‘e’?” As a smart aleck teenager, I’d roll my eyes and spell it for her. That deep laugh of hers would boom across the room, and she’d laugh at herself and say, “Oh, that’s right! I remember now. ” Now that she’s gone, I realize my mother was smarter than many of the most educated people who have come across my path. She had great insight into life as she proved over and over again. When she died, we had two memorial services for her. One in Florida and one in Chicago and the number one comment people said to us was, “Your mother was so much fun!” or “Your mother made me laugh.” Her zest for life, her upbeat attitude, and her happiness despite much heartache, suffering and pain, are a tribute to her. As I get older, I marvel at how often she did laugh. It’s hard to laugh when the people you love die of kidney failure, or find joy when your kidneys fail, when you’re in pain and sick and need surgery and dialysis, or when your quad muscles snap and you’re bedridden for six months but you have to go to the dialysis center three days a week via ambulance. “No one wants to hear my woes,” she’d say through gritted teeth during the rough times. Not that she didn’t have her down moments when things were really bad, but there was something about her that always battled back from those times. She loved her father deeply and often mentioned how he recited, “I cried and cried because I had no shoes, until I met a man who had no feet.” That was how she dealt with dialysis. Her mother and one of her sisters didn’t have the gift of dialysis, so over and over again, when I’d visit her at the dialysis center during the ten years the dialysis machine kept her alive, I still remember her smiling up in delight when I arrived. Then her laugh would erupt from deep within her. “Don’t look so serious, Suzie, I’m so lucky to have dialysis available to me. Yep, I am one lucky woman. Now wipe that worried look off your face and...
Read MoreNBC Charlotte Today show
I’m getting ready for my appearance on NBC’s Charlotte Today show. While I commented and asked for input about what should I wear, I realize what I wear is not as important as what I say. I realize that while I fuss with my hair, my makeup, and my clothes someone will be reaching in their closet for comfortable clothes to wear for four hours as they sit in a chair at a dialysis clinic. Every single drop of the blood in their body will be filtered through the artificial kidney, aka dialysis machine, because their kidneys failed. All because of polycystic kidney disease. I realize today somewhere someone will be diagnosed with PKD and that someone might be the tenth family member of a family to be diagnosed. I realize they have experienced issues with the disease through another family member and they may be terrified. I realize today someone might be diagnosed with PKD who has never heard of polycystic kidney disease. It might be someone who has experienced a gene mutation. While I’m fiddling with my necklace, someone is wondering, “why me?” I realize today someone is heading to a hospital to have a fistula implanted ibecause kidney failure is imminent. I realize today someone is trying to decide if they can have the baby they dreamed and hoped for all their life, despite their polycystic kidneys. Someone else is worrying whether a new baby has inherited polycystic kidney disease. Someone else is worrying if they should put the strain of a pregnancy on their diseased kidneys. I realize while I worry how I will appear on camera and if I will speak clearly and coherently, someone is filled with pain caused by a cyst that burst. I realize today someone is weary and sad and fed up with the disease called Polycystic Kidney Disease. I realize that today I have an opportunity to explain what polycystic kidney disease does to families. I have an opportunity to ask others to help those of us affected by PKD, by being an organ donor, a volunteer or a friend. I have an opportunity to inspire a researcher somewhere, anywhere to be motivated to help find a cure for PKD. I realize that through my family’s stories of courage, faith and humor, I have an opportunity to bring hope to anyone discouraged about a disease called polycystic kidney disease (PKD). Because there definitely is...
Read MoreJune 19, 1966
June 19, 1966 Peering out the Venetian blinds at my aunt’s house, I saw the car pull up to the curb. “She’s here!” I yelled as I ran out the door. My beautiful mother, tall, strong and bronzed by days on the golf course, stepped out of the car into the warm June morning. Jutting her chin out, she pulled her shoulders back, as if to stand at attention. We ran to her, my sisters behind me. “She’s gone,” Mom stated, opening her arms for us to nestle. Despite squeezing her eyes shut, tears trickled out of the corners of Mom’s cornflower blue eyes. Impatiently, she wiped them away and stated, “She’s out of pain. And, what a happy day it must be in heaven when she arrived.” The roses were in bloom. I could smell their heady fragrance. Birds chirped, sunlight dazzled, and the June day burst around us with indescribable joy, despite our broken hearts. Our sobs hiccupped loudly, and Mom’s voice quivered, “Now, now! Come on! She wouldn’t want us moping around. We have to go on and you girls have to make her proud.” Mom hugged us again. Our tears continued to drop while Mom described what was going on in heaven. “She’s having fun up there, meeting God, the saints and the angels, and Mother and Dad. She’s probably making those silly faces of hers. Didn’t she teach us how to make silly faces when we are sad? That’s how we honor her.” My mother set aside her own shattered heart to teach us how to handle grief. Standing on the curb on a side street in the bustling city of Chicago forty-eight years ago, the torch in the battle against PKD was handed to us. We have tried to make her proud. Mom, JoAnn and Janice have knocked it out of the park with the way they have handled PKD. Their fortitude, strength and courage are stellar. None of it could have been done without the faith she taught us. Ironclad faith. Rest in peace, Sister...
Read More