Spotlight - Heather Siegelheim

Each week we will be picking members to spotlight to tell their Alzheimer's story and why they are running in this year's New York City marathon. Check in each day for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random)

When I attended my Great Uncle Sidney's funeral in 2005, I was 20 years old and home for the summer after my sophomore year of college.  I remember that day well because at a rather formative and transitional time in my life, I left that day feeling sad yet inspired and motivated by what I had learned.  Unfortunately, I did not have the opportunity to get to know my great uncle before he developed Alzheimer's, and he was the first person I personally knew to suffer from the disease.  As I listened to the shared stories of my great uncle's life, I could not believe some of the things I was hearing.  I had always heard that Uncle Sidney was a true intellectual: a lawyer, writer, thinker, and world traveler.  But there was so much I did not know.  I learned that day that Sidney Liskofsky was a preeminent human rights advocate and important contributor to the United Nations.  In 1971, he became the Founding Director of the American Jewish Committee's Jacob Blaustein Institute for the Advancement of Human Rights, an organization committed to institutionalizing universal human rights standards and monitoring.  As his obituary in The New York Times stated, “Sidney . . . devoted his professional and personal life to the welfare of the Jewish people and to insuring human rights and dignity for all.”  I still struggle to comprehend how someone so accomplished and influential could lose all memory of his life’s achievements.  It deeply upset me and I felt helpless and confused.  

Little did I know that a few years later, Alzheimer’s disease would cause more heartache for my family and confront us with ethical dilemmas, unanswerable questions, and great sadness. My beloved Grandma Ruth, Sidney's sister, was one of the kindest, most considerate people you could ever hope to meet.  She never wanted to ask anyone for favors or put anyone out, yet was always willing to extend a hand to others.  My grandma did not have much money, but what she did have she used to support her family.  My mom often tells me that she knows they did not have much money growing up, but she never felt poor and she never wanted for anything in life.  My grandma and grandpa did all they could to provide a loving and supportive family home for their children.  Those invaluable parenting skills that can only be taught through example were passed on to my mom, and now I see them in my sister.  I can only hope that someday I will be able to put them to good use, as well.  My grandma was not very educated, but she was smart and informed, and she worked hard.  My mom has told me about she wanted to help my grandpa, who was a NYC taxi driver at the time, provide for the family.  So she went out and got a waitressing job at a coffee shop/restaurant in the city.  She loved working and found pride in it, and she enjoyed serving others.  When my grandpa got sick and was put into a nursing home, she visited and sat with him every single day for many years.  My grandma was a loving wife, mother, grandmother and great-grandmother, and did not deserve an ounce of pain or sadness in her life.  But Alzheimer's -- like any other disease -- does not discriminate.  

Like many people, I had always associated Alzheimer's with elderly people getting lost or losing their keys, but witnessing my grandma suffer through the disease, I realized it is so much more devastating and incomprehensible than that.  Yes, it did start with forgetfulness -- forgetting where her mailbox was, temporarily forgetting our names -- but it rapidly regressed into forgetting completely who her family was, forgetting who she was, forgetting how to walk, how to talk, how to feed herself.  It was utterly heartbreaking -- not only to witness her suffering, but also my mom's heartache as a result.  I saw her steadily declining over the course of a few years, but when I went to visit her in the hospital in her last days, that is when the reality of it all set in.  My beautiful grandma was unrecognizable and unresponsive.  I couldn’t bear to look, yet I could not turn away.  She passed shortly thereafter, in September 2011.  Since then, I have been trying to find the right cause that would have meaning for me and honor her memory.  I found it in Athlete's to End Alzheimer's. 

This will be my first marathon, so I wanted to connect what will undoubtedly be a mental, emotional and physical challenge for me, with a cause that is very close to my heart and with the shared support of others.  I will be running on November 3 to honor the memories of my Great Uncle Sidney and my Grandma Ruth, and I can think of no better reason to run.