It’s a disease that is inherited, a disease with no cure or proper medication. So why do we hear so little about Sickle Cell Sickle (SCD)? One brave woman, Gail Campbell Woolley sets out to change that by taking us on her painful, yet powerful and inspirational journey from her diagnosis with SCD to death with Soar: A Memoir Woolley describes her diagnosis at 7 years- old as a ‘death sentence handed down by her pediatrician.’ Despite being told she may not live past the age of 35 she was determined to live a full life, traveling, exploring and finding love.
“Gail felt that the story of her disease was not being told especially from a patients perspective. She wanted to send a message of hope to others and show them how they could still live a full life,” said Gail’s husband Howard Woolley. 100,000 Americans have Sickle Cell Anemia, also known as Sickle Cell Disease, a condition in which there aren’t enough healthy red blood cells to carry oxygen around the body. It affects millions of Americans and is most common among African Americans and Latinos.
Howard Woolley adds, “It’s a silent disease as there are often no outward signs of an illness but there is excruciating joint pain among other severe symptoms. So, to others, a person may look normal and someone may never ask or learn about the condition. When we were first married there were frequent visits to the emergency room and it was hard to explain to the doctors that the condition needed stronger pain medication than they normally administered, as they were not familiar with the extremities of SCD. Later Gail would try new drugs to control the pain crisis but the damage to her body was already done.”
Gail holds nothing back as a journalist herself, she put pen to paper and shares her most inner emotions of frustration, pain but also the joy she experience through her life despite the odds being against her.“When my fate was unveiled at a tender age, I knew I had two choices: I could be negative, whine and bemoan my bad luck accomplishing nothing with my life, or be positive, educate myself about my illness, and get on with living and make every single second matter.” Said Gail.
“I have so many wonderful memories of my wife. We met in college and it was an amazing journey. Gail was a very talented journalist and she traveled the world. Towards the end, Gail lost her ankle through the disease and as an amputee she spent a significant amount of time in a wheelchair. During this time, she also had to receive oxygen fulltime to treat Pulmonary Hypertension. A hospital doctor told her she couldn’t swim anymore. Her response was to take up scuba diving as a sport she could do that overcame her amputation and respiratory disease to swim again. She never gave up. That is who she was, always living. That’s the message in her book, never give up.” said Howard Woolley.
The only definitive cure for SCD is a bone marrow or stem cell transplant. The cure is dependent on finding a match and having access to a specialist in the field.
“John Hopkins is now pioneering a program that allows just a partial bone marrow match to go ahead with treatment.,” adds Howard Woolley. There have been a few celebrities in recent years that have spoken out about the disease. Singer Jordin Sparks recently spoke out about SCD after losing her stepsister to the disease recently. Bryanna Jackson-Frias was 16.
Larenz Tate, Tiki Barber and TLC singer Tionne “T- Boz” Watkins all push through life in the public eye with SCD. Watkins is also the spokesperson for the Sickle Cell Disease Association in the U.S.
Watkins recently spoke to ABC News about her battle with the disease. “Touring and performing with SCD is one of my biggest challenges in life. The easiest way to describe it is that oxygen can’t get to your vital organs. So if it’s your legs, you can’t walk. Your arms, you can’t even hold a pencil and write, I, like so many sufferers have been through so much.” said Watkins.
While more research is underway SCD still remains a mystery to many but times are changing. A Boston public school recently recognized SCD as a disability that interferes with a student’s education.
Howard Woolley adds, “I remember Gail telling me that she had heard a song that she loved, a song called ‘Happy’ by Pharrell Williams. She asked me to make it a ringtone on her phone. I always thought it was inspiring that when her phone rang people around her would hear this cheerful happy song and it was that of a woman in a wheelchair. She was suffering in silence — thanks Pharrell for making her smile.”
Gail admits in her book that her goal is not to write a litany of words that will require a medical dictionary or a depressing journey with no upside. “I want to show my driven and fearless approach to life. This book is the last item on my bucket list and it is the reason I have survived long enough to tell the story,” Gail Woolley.
Soar is available through Agate Bolden. You can purchase here: Amazon.
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