Turns Her Personal Struggle into a Mission
If Winny Stockwell
asks you for money, you might as well hand it over. Her tenacity and devotion to her cause are so compelling she will have you convinced in no time that it is something you just have to do.
Winny was recently recognized by the Silicon Valley chapter of the Association of Fundraising Professionals, a philanthropic organization, for her exceptional fundraising success on behalf of the Northern California Lupus Foundation. Since she began volunteering for the organization seven years ago, she has raised nearly $50,000 in the form of grants and individual donations for research and programs to aid those who suffer from lupus, a debilitating autoimmune disorder.
It would seem that Winny has enough challenges, with her long list of fundraising and volunteer activities, as well as an 18-year career as a member of the technical staff of AMD's Technology Development Group. However, her quiet strength and persistent determination to better herself and the lives of those around her make her accomplishments all the more noteworthy - especially in light of the fact that she too suffers from lupus.
Living with lupus
Winny & John Winny was diagnosed with lupus in February of 1995, a month after she married her husband, John.
Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood and kidneys. Although the cause of lupus is still unknown, contributing factors may include infections, antibiotics and other medications; exposure to ultraviolet light; and extreme levels of stress and hormones, when linked with a genetic predisposition to the disease. Lupus may result in minor aches and pains or may affect any body organ, which could lead to serious and even life-threatening problems.
For Winny, the hardest part about living with lupus has been its sheer unpredictability. "The symptoms you have may change drastically from day to day. You may be fine today, but not be able to walk tomorrow, because your joints are so swollen." And often, medications prove ineffective for treating such acute symptoms.
One day at a time
Since her diagnosis, Winny has experienced both mild and acute symptoms or "flares," ranging from joint pain and chronic fatigue to a very painful inflammation of her chest-wall and even her eyes. At one point, she couldn't walk without the aid of crutches for over than a year. She says her strategy has been to tackle the disease one day and one flare at a time.
"The bottom line is, with lupus you really have to learn how to be flexible, and always have backup plans," she adds. "If we plan on going somewhere, sometimes we have to change plans. Our friends have had to learn that as well."
A supportive work environment at AMD has also make a big difference, says Winny. She recalls an instance a few years ago, when she was on crutches due to an acute lupus flare. She found out that some of the doors from her office to the lab where she does most of her analytical work would shut too fast, before she had a chance to completely enter or exit the rooms. Her management took immediate steps to ensure that all the doors she used frequently closed slowly. They also installed a networked computer for her in the lab, so she would not have to keep going back to her desk to check her e-mail.
"These might be small gestures, but they meant a lot to me as far as how effective I could be at work," she says. "It just meant that they cared."
And while Winny refuses to let lupus rule her life, she has to take certain precautions on a daily basis. Like many other lupus sufferers, she is photosensitive and has had to minimize her exposure to sunlight because it causes rashes, which can trigger serious lupus symptoms. This requires her to wear long sleeves, hats and sunscreen outdoors during sunny seasons. She also has had to reduce and manage the sources of stress in her life to avoid the onset of flares.
Added to the day-to-day challenges of coping with lupus is the difficulty of diagnosing and curing it, given that its wide range of symptoms can overlap with other diseases. It isn't uncommon for patients to wait five to seven years before they are correctly diagnosed with lupus, says Jo Dewhirst, executive director of the Lupus Foundation of Northern California.
An opportunity to give back
For Winny, her lupus diagnosis eight years ago became an opportunity to learn as well as to teach. Not having any knowledge of this relatively unknown disease, Winny and her husband turned to the Northern California Lupus Foundation for answers and guidance on how to cope with it. She says the assistance and education she received from the foundation empowered her to fight the disease and opened her eyes to the invaluable role the organization plays in the lives of lupus patients. She knew then that part of her mission would be to give back what she received, by serving the foundation.
In the past seven years Winny has been involved in the following areas:
- Served on the Board of Directors for three terms from 1997-2000; board Nominating Committee twice
- Faculty Director for Patient Education Classes; this role includes training new instructors and sub-chapter members, teaching the class, keeping the course material updated and helping produce a new education video, "Understanding Lupus"
- Co-Chair for the 20th Anniversary Gala and Chairperson for the 25th Anniversary Gala
- Outreach Representative; speaking opportunities range from presentations to small groups to over 500 people, radio/TV interviews, health fairs/conferences and featured patient in the Foundation videos "Lupus: Find It Early" and "Lupus in the Workplace"
- Captain for AMD, Friends and Family Team for the Spring Run/Walk for Lupus: The 2003 team won awards for largest group and biggest fundraiser.
- Active participant for the Winter Mercedes Drawing usually selling the most entries
She says the connection she makes with lupus patients, their friends and family members is the most meaningful aspect of her volunteer work. "They look at me and say, 'She's been through some really rough times. She has learned how to handle it. There's hope for me too,'" Winny says. "So you can be a light to somebody, and that's extremely rewarding to me."
Referring to Winny's recent recognition as a leading Silicon Valley fundraiser, Jo says it's her intense dedication to the task and ability to rally people to the cause that make her successful. "She is so delightful and engaging, it's hard to say no to Winny. And she's definitely not afraid to ask!"
And over the years, AMD and AMDers have responded, not only with corporate grants and generous contributions, but also by participating in her numerous fundraising activities.
The silver lining
Winny admits she might have been a very different person today if it weren't for lupus. She says having lupus has helped define her purpose in life and she even goes so far as to call it a blessing. Lupus has made her re-evaluate her priorities in life. "I'm not very good at saying 'no' to commitments, whether they are professional, social or voluntary, but I have learned to let go of a lot of the little things that I used to try to control," she says with a laugh, "Things like keeping the house immaculate."
On a day-to-day basis, Winny says lupus has helped strengthen her relationship with her husband. "It was really hard for me to ask for help at first," she adds. "And it was also very hard for John to see me suffer and not be able to do something. Now we attack my flares as a team, so he knows when he needs to pull more weight."
Lupus has also strengthened her sense of spirituality and purpose. "I have a fighting instinct, I can't let this get the best of me because I have more to offer," she says. "You have a choice in life. You can either be a victor or a victim, and I choose to be a victor. I am not mad at anyone because I have this disease. I think it has made me a better person. So it really has been a blessing in disguise."
But most importantly, Winny says her fight against lupus has given her an opportunity to reach out to other lupus patients and to the community at large with the message that, given a chance, lupus patients can be valuable citizens and employees. As she looks to the future, Winny says she won't stand by waiting for a cure, but will continue to measure her triumph against the disease one day and one flare at a time. And through it all, she vows to be guided by the following mission: To live beyond this disease, and to live life the best she can every day by focusing on spirituality, possibilities and hope. "And if I can help other people along the way," she adds, "I'm just better for it."
More About Lupus
Lupus is a non-contagious autoimmune disease that causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin. Here are some facts:
- It is estimated that as many as 1.4 million Americans currently suffer from lupus. Worldwide figures are not available.
- Lupus is often referred to as a "woman's disease," because 90 percent of lupus patients are women, and it is more common in women of Afro-Caribbean, Asian, Hispanic, Far Eastern and Native American origin. The hormone estrogen, predominant in females, is thought to be the reason why women of childbearing age are most susceptible. However, lupus can also affect men.
- The causes of lupus are still unknown, but environmental and genetic factors are believed to be involved. Some factors that may trigger the disease are: infections, antibiotics, ultraviolet light, extreme stress, certain drugs and hormones.
- Because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go, lupus can be difficult to diagnose. Symptoms can range from mild to life threatening.
- There is still no cure for lupus, but medical treatment can lead to control of the disease.
Major portions of the above article excerpted from an article written by Vibeka Sensisodiya for the AMD Employee Newsletter Dialog.