Advocating for Family, at Home and in Our Community
Paula Kegelman, NAMIGO Board of Directors President
Paula Kegelman describes her feelings following her son David’s diagnosis of Schizophrenia in 2005: “In the beginning, you feel very hopeless and that no one else in the world could possibly be going through what you are going through.” It’s now 13 years later and “hopeless” is not a word that would be used to describe Paula. David, “My David,” as Paula lovingly refers to him, is doing well and living in recovery. Paula is now Board President of NAMI Greater Orlando (NAMIGO); her efforts in advocating for her son have extended far beyond their family.
In 2006, a Nurse Practitioner and friend recommended that Paula call NAMI Greater Orlando. In doing so, she attended NAMIGO’s Family-to-Family course. The course was a blessing. Paula remembers, “As cliché as it may sound, it changed our entire lives as a family: The way we communicate with our son. The way we incorporate him into our family. It helped us to be able to learn more about his illness.” A natural leader, Paula then went on to teach the same Family-to-Family class and has does so annually since 2007. When asked what advice she would give to parents and caregivers of those living with mental illness, Paula speaks from experience. Noting the importance of self-care in advocacy, she explains, “When our loved ones have relapses and go into crisis, we tend to lose ourselves. Who am I if I am not caring for David? Your life is consumed around that critical period, so remembering to take a step back and to practice self-care. It is unbelievably important.”
Paula would go on to chair NAMIGO’s NAMIWalks for five years. NAMIWalks was instrumental in growing the organization and raising the funds necessary to advocate for mental health in the community. This advocacy is essential for breaking the stigma surrounding mental illness. Paula reflects on the harsh consequences her family, like so many others, have suffered due to harmful stigma. She speaks about the differences in treatment from colleagues and neighbors. Perhaps most impactful, she recalls the differences in treatment from those who are close to us, saying, “When our loved ones are hospitalized, they don’t get flowers or get well-balloons sent to them. Why?” She recognizes the injustice caused by stigma, but Paula isn’t one to point out injustice without taking action. After seeing the need for resources and awareness in the community, she says of her work with NAMIGO, “I would love for NAMI to be the first name that pops into someone’s head when they think about mental illness. So, to accomplish this, we need people in place who can go out and advocate.”
Advocate she does, whether it is for David specifically or all people whose lives have been affected by mental illness, which is quite literally, ALL people. Paula elaborates on the prevalence of mental illness, “When one in five are affected by mental illness, whether you think you know someone or not, you do. It is statistically impossible for you not to.” It is Paula and NAMIGO’s mission to end stigma through a variety of programs, largely based on education. On mental illness and seeking treatment, Paula explains, “It frightens people because of a lack of education in general.” Paula is a testament to the belief that views on mental illness can change, and stigma can be eradicated. “I did not understand the biological brain disorder component of mental illness. I did not understand the courage that it takes for someone to live through these disorders. They [people living with mental illness] are some of the most courageous people I know.”
For the past 13 years, advocacy, strength and love have shaped the direction of Paula’s life. This direction has helped grow an organization, strengthened families, and broken down barriers of stigma far beyond what we can measure. Paula’s work can be seen in NAMIGO’s busy office, in the daily conversations she has with her David, in the families that are able to advocate for their loved ones because they now understand what mental illness means. Paula’s work can be heard in the voices of advocates who will not take no for an answer when fighting for their loved ones. On being their voice, Paula says, “Our loved ones don’t always have a voice. Especially when they are in crisis. Don’t be afraid to be that voice. Don’t be afraid to get out there and talk about mental illness. Don’t be afraid to send the bullet point, one page to the doctor. Don’t be afraid to advocate for a loved one for services. Don’t be afraid to fight the denial of a medication because it is not covered [by insurance].” Paula takes a moment, and says, in conclusion, “And again, remember that there’s hope.”
NAMI Greater Orlando thanks our President, Paula Kegelman, for her advocacy and leadership. Through her work, she has made our office, organization and community a stronger place.