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My “Why JMF”: Lauren Maley

As we enter the last few weeks of 2020, JMF is thrilled to be sharing our community’s “Why JMF’s” with you. There are so many fun, fascinating, and inspirational stories and experiences behind each “Why JMF”, and we’re especially honored to share this one.

Lauren Maley, current Development Associate for JMF, and niece of co-founders, Vivian and John Maley, shares her personal “Why JMF” in this week’s blog:

Why JMF? There are countless reasons to support the Joseph Maley Foundation. Be it the incredible education programming, the kind and generous staff, the creative classroom activities and clever puppet shows, or the sense of community and inclusivity that JMF inspires. All of these reasons, and many more, are a part of my “Why JMF”. 

However, the way I came to JMF, and the way I fit into the Foundation, is unique. While this story is very personal and sometimes difficult to reflect on or share, I feel that now is the time when I need to tell it. I believe my “Why JMF” exemplifies our Butterfly Wishes of Awareness, Inclusion, and Acceptance, and I hope that my story can be an inspiration for others to share their own.

My cousin Joseph was born just a few months after I was. Joseph and I were the firstborn children of our fathers, the Maley men (who are not twins, despite a near identical resemblance). On the Maley side of my family, all of my cousins were boys, and growing up they always felt either much older than I was, or much younger. But Joseph was the only cousin I had who shared my age. That always felt really special to me.

As we grew up, Joseph and mine’s lives took completely different paths. He faced an unfathomable amount of challenges, while I was primed for a life of success, filled with privilege, and void of any real physical, emotional, or mental challenges. 

Joseph passed away while I was moving into my dorm my freshman year of college. The parallels in Joe’s life and my own were always on my mind.

Years later, when I was 25, the minor inexplicable and strange things that had plagued my health for the past five or so years started to get even stranger, and became dangerous. I knew something was very wrong. I was in a serious decline, and lost my job after a trip to the hospital that would become the first of many. My Uncle John  helped me through the ordeal, as he had with other employment issues in the past, and lent me the support I desperately needed. Many months later, it would be confirmed what was expected, yet nearly impossible to prove – I had lupus. 

Over the next few years, the decline in my health took everything from me: my career, my friendships, my mental health, my confidence, my strength, my ability to have children on my own, my stamina, even spending time in the sun. I couldn’t focus for even an hour without getting physically ill. 

At 30, I still am nowhere near where I used to be and I never will be. Accepting that is ongoing, and I go through the stages of grief repeatedly. I am chronically ill, and I am disabled. My body was broken, my heart was broken, but for the first time, my eyes and my mind were finally open. I became an advocate for invisible illnesses, chronic disease, lupus awareness, and people with disabilities. 

The love and support I have gotten from John and Vivian is unparalleled. I try to model my own behavior after theirs, and find the strength to carry on in theirs. When getting back into the workforce, I realized that JMF stood for everything I believed in. I am so fortunate to now get to support my family and assist in JMF’s vision to bring awareness, inclusion, and acceptance to children of ALL abilities. 

I feel as though the parallels in Joseph’s life and legacy have started to intersect with my own. I feel a great responsibility to honor my cousin and an immense and overwhelming gratitude for my aunt and uncle and JMF. In a way, lupus has been an incredible gift. What I have gained in empathy, love, and humility is greater and more important than anything lost. The values I hold are the same as JMF’s – we share the same wishes: to spread  Awareness, Inclusion, and Acceptance of ALL. That’s my “Why JMF”.

 

Blog written by JMF Development Associate, Lauren Maley