Stories of Inspiration and Hope
Very few of us are born heroes. Instead, most of us are dragged into the role kicking, screaming, and crying like two year olds. As patients, parents, caregivers, and loved ones of those who are sick, we know the price we pay for being given the title "hero". Being a hero means forcing ourselves to do what terrifies us day after day, night after night. Many have felt like total cowards even while people close to us marvel at our bravery. Many have fumbled and stumbled while others have watched in admiration at our grace under pressure. Many times being a hero means just getting out of our bed each morning to face a new day. Many times we are heroes simply because we fight to keep our hearts and spirits from being destroyed by this disease.
The following are stories from patients and family members who became heroes the day they became diagnosed.
I Can't Wait to See What the Next 36 Years Will Hold!, by Cheryl Clark -
I've always been a regular blood and platelet donor and was one pint short of my two gallon pin when I went to donate blood on May 1, 2002. From time to time, I had been denied a chance to donate because my iron was low, so I didn't think anything of it when the nurse told me my iron was too low that day to donate. But just on the off chance that she could squeak me by, she drew a small capillary tube of blood to test my hematocrit to see if I could still donate. Her eyes were as big as saucers...
The Harder I Train, the Luckier I Get, by Linda Mobley -
This is my story: I have aplastic anemia. It is a bone marrow failure disease with less than 1000 newly diagnosed cases each year. Since my immune system did not like my own stem cells, I was not a candidate for an auto graft (which means harvesting my own cells). I was fortunate that I have 2 siblings, both who were willing to donate (I will leave them on my Christmas card list). My sister was a perfect match, so I am an allo graft. I was so glad that she was a match; otherwise, I would have been a MUD (matched unrelated donor). My parents always told me as I was growing up that if I did not straighten up, my name would be MUD. I was very happy that this did not prove them right...
Attitude, from AA&MDSIF Newsletter, Summer 2005 - Last year, 6 years after successful treatment cured her aplastic anemia, Sarah Higgins developed PNH. And being the amazing 27-year- old woman that she is, neither disease stopped her from earning a college degree, a master's degree, and a Ph.D.! That's a lot of degrees...
Kinsey the Dragon Slayer, by Kinsey Morrison - Hi! My name is Kinsey Morrison. I was diagnosed with aplastic anemia (the "dragon") on March 21, 2002. We left Albuquerque, New Mexico to go to Milwaukee, Wisconsin where a specialist in this disease—Doctor Big Dog (David Margolis) could help me get better. After two years there...
Today I Got Some Good News, by Becky Waechter - Today I got some really good news. After 4 1/2 years of treatment, my platelet count reached 172,000. Very expensive blood! I can't tell you how much AA&MDSIF has meant to me. When I first went through diagnosis, I'd only ever heard of this disease one time...
Semper Fi, from AA&MDSIF Newsletter, Spring 2006 - In 1985, Stephen King, a former U.S. Marine was enrolled at the University of Georgia when he started feeling extremely tired. In true Marine fashion, he continued to push ahead until he finally passed out at a family cookout...
My Life, My Poetry, My MDS, from AA&MDSIF Newsletter, Spring 2006 - An inveterate bicycle rider, MDS patient Jerry Draayer, age 70, biked to the Boise State University campus and then on to the clinic for bone marrow biopsy #6. With a stop at the bank on the return trip home he completed a ten-mile circuit that morning. Despite frighteningly low cell numbers and high blast counts, iron overload, and a compromised immune system, Jerry bikes year round...
Selena Burke's Story, by Vincent Burke, Selena's dad - "My stomach hurts," my daughter, Selena, then nine, said to me one morning in March of 2004. The next morning she had the same complaint. A 'just in case' trip to the doctor turned our world upside-down very quickly...
Perspective on Living With MDS, by Arthur C. Henry, PhD - 2006 Update - It has been five years since I wrote this article, and I was asked (and it also seemed timely this year, 2006-- the tenth anniversary of my diagnosis with RARS) to update how things are going for Suzy and me...
Surviving Aplastic Anemia, by David Mu - The trees blended into a green blob as the old Mazda sped along Interstate I-95 on a wintry, November morning. As the Baltimore skyline disappeared behind me, I reflected with a heavy sigh at the set of events that unfolded during the past six months...
Rain in a Dry Season, by Shirah Kober Zeller – The first line of treatment (infusions of animal protein derived from horses) failed, was attempted again and failed a second time. My doctors were pouring blood into me two or three times a month and administrating Epogen injections four times a week. There was nothing left for them to do. They arranged for a consultation at the National Institute of Health in Washington D.C. and wished me well...
My Computer as part of my Support System, by Stephanie Vendig -
Facing a disease that is incurable is daunting. You have to garner your strength, psychologically and physically, to cope with its impact, which is not always easy. And as most of us discover, our support systems become absolutely crucial. Nobody doubts the role of family and immediate friends. However, in today's world there is another means for getting support, namely through the computer...
Life Lessons From Twenty Years With Aplastic Anemia, by Andrea Pecor - Andrea Pecor was 24 in 1980, fresh out of college with her whole future ahead of her, when she began experiencing the symptoms that would eventually be diagnosed as aplastic anemia (AA). "It was all a bit unreal," Andrea said. "My life completely changed overnight." As she struggled to come to terms with her illness...
Lizzy's Adventures with Aplastic Anemia, by Kimberly Temple, Lizzy's mom - My daughter Lindsay was diagnosed in May of 2001. The first thing I did was start scouring the internet for information about this monster that had quietly and completely taken over my life...
Caro's Courage, by Carolyn Shaw Glasow - The experiences surrounding the diagnosis and treatment of my bout with aplastic anemia bring back memories so vivid I can almost place myself back in time and relive each and every challenging moment of my disease. I was at the peak of my junior year of chemical engineering at UT Austin, and my days were completely occupied and fast paced - finishing labs, racing to class, interviewing for internships, squeezing in time for a workout, and of course, causing plenty of trouble with friends. I had no time for annoyances...
The Not-Enough Disease, by Steven McGill - My immediate reaction to being diagnosed with aplastic anemia was one of relief. I didn't know what it was. Sitting in the office with my mom, dad, and older sister, I stopped listening to Dr. Schwartz as he continued to explain the treatment options and surmise how long I might have to stay in the Children's Hospital of Philadelphia. I hadn't heard the word 'Leukemia,' nor the similarly fateful term for people of my race – 'Sickle-cell,' so I figured I had escaped any real danger. Also, I felt relieved to find out there was a name for the steady decline in health I had been enduring for the previous six months. Little did I know...
MDS : The Worst Thing To Happen To Me - Was Really the Best Thing to Happen to Me, by Lou Swartz - Life is like sailing: there are storms, boring times and moments of excitement and adventure. It can be either an exercise in survival or feelings of pure pleasure. We don't really have that much control over our fate, but we need to learn to accept the situation, adapt to it, and make the best of it. My MDS was one of the storms. The only difference between an ordeal and an adventure is our attitude. Acceptance and gratitude are essential...
Jan Gale's Story - Jan Gale, of St. Louis, Missouri, had always been one to bruise easily, but on July 3, 1997, she discovered that her severe bruising was not from her new puppy jumping on her, but in fact the result of a rare bone marrow disorder...
At these odds I would have preferred to win Lotto!, by David Schnellenberg - All of us have had that moment in time when, our lives would never be the same. For me it occurred in early June 1999, when stepping off a bus onto the footpath in Lambton Quay (Wellington's main shopping street) I realised for the first time that something was seriously wrong with me and I needed to get help, urgently...
Last modified November 13, 2006
