The thing you have to understand

The thing you have to understand about Alzheimer’s is that there are no survivors. The prognosis is never good. It is, in fact, always death. I think this is what makes raising awareness for Alzheimer’s so difficult. With other diseases there is always an aspect of hope and the ability to rally around that hope can be incredibly powerful. This does not exist with Alzheimer’s.

The thing you have to understand about Alzheimer’s is that it is a mental illness, and therefore invisible. As a society, we don’t do a great job of treating invisible illnesses with the same empathy we do physical illnesses. They make us uncomfortable. They make us fearful for our own mental health. They make us want to stay away.

The thing you have to understand about Alzheimer’s is that it takes away everything you ever knew. And not in the cheesy way The Notebook depicts where a beautiful love story can magically bring back your memories. I’m talking about an irreversible process that slowly denies you the ability to do everything you once knew how to do. Speak. Use the bathroom by yourself. Eat.

The thing you have to understand about Alzheimer’s is that it makes other people sad. They don’t want to remember you as a husk of your former self. So they stay away, hoping to instead remember you as you once were: a vibrant human with interests and passions.

The thing you have to understand about Alzheimer’s is that while you might have the option to stay away, those closest to the person diagnosed with the disease do not have that luxury. They are in the trenches day in and day out, slowly seeing their loved one leave them inch by painful inch. There is no escape for the caregivers. There is no option to stay away.

The thing you have to understand about Alzheimer’s is that it doesn’t just take away the memories of the person affected. It takes away the memories you have of that person and replaces them with difficult and painful memories. And though you try to keep hold of the good ones, as the years progress the painful memories become more prevalent, pushing the older and happier memories to the recesses of the brain.

The thing you have to understand about Alzheimer’s is that it is the sixth leading cause of death in the United States. Every 66 seconds someone in the U.S. develops the disease. That you are more likely to die of Alzheimer’s than breast cancer and prostate cancer combined. And that by 2050 it is estimated 16 million Americans might be affected by the disease.

The thing you have to understand about Alzheimer’s is that it is not a natural consequence of aging, but it does affect those who are older. And isn’t that the goal? To grow old and to be able to enjoy life after putting in years and years of hard work? But this is being denied not only to those with the disease, but those who are charged with caring for them.

The thing you have to understand about Alzheimer’s is that I’m over it. The thing you have to understand is that I am going to do everything I can to make sure that other families are spared the heartache my family experienced. The thing you have to understand is I can’t do it alone. Please consider making a donation to The Longest Day this year. https://act.alz.org/site/SPageServer?pagename=tld_participant_center_2017&pc2_page=center&fr_id=9704

Statistics courtesy of the Alzheimer’s Association: http://www.alz.org/facts/overview.asp

 

 

 

In Loving Memory of Xanthula Tripolitis

When Xanthula was a young girl, she was very self-conscious about the size of her feet. She confessed this to her Yiayia Eleni, with whom she was very close. In order to cheer her up, YIayia Eleni took her to the birdcage at the St. Louis Zoo. Once inside, she pointed out the peacock to Xanthula. “What do you see?” asked Yiayia Eleni. Xanthula described the beauty of the bird, noting its magnificent tail feathers. After she had finished, Yiayia Eleni then suggested Xanthula take a look at the peacock’s feet. Peacock feet, if you weren’t familiar, are scaly, brown, and oddly shaped. “You are like a peacock,” Yiayia Eleni said to Xanthula, “Although you may not have pretty feet, everything else about you is so beautiful that no one will ever notice.”

I love this story. I am so thankful that Yiayia Eleni inspired confidence in Xanthula in such a young age, because I believe it laid a foundation that allowed her to grow into the formidable woman she would become.

Xanthula married Theodore Tripolitis in 1947. Theodore, as many of you know, enjoyed working just a little bit. Xanthula stayed at home and raised the couple’s daughter Elaine, whom she had named after her beloved yiayia. As her daughter grew older, Xanthula began to develop many varied interests and passions that would stay with her for the rest of her life.

Her passion for gardening and preservation of natural resources led her to the world of civic duty, and in 1971 she launched a successful campaign to join the Crestwood Board of Alderman. Now, knowing my yiayia, it shouldn’t surprise me that she was anything but successful in her bid for public office. However, as any good government teacher can tell you, the chances of a female with an ethnic last name winning public office in the early 1970s were not great. But win she did, and she would continue to work for her beloved city of Crestwood for decades to come in one capacity or another.

Her commitment to her interests and passions stemmed from her incredible determination. Once Xanthula decided she was going to do something, she didn’t just do it 100%, she did it 200%. She didn’t just run for office for the public recognition, she ran because she decided that something needed to be fixed in her city and she was going to fix it. Anyone who was ever foolish enough to get in her way soon learned that she was not the type of woman to back down once she had decided on a course of action, and it was best for everyone involved if you moved out of her way. I know this from personal experience. After we adopted my sister Anna, we had a family discussion about what her middle name should be. Because I had really wanted a dog and instead gotten a sister, I thought a good consolation prize would be to give her the middle name “Allison.” Needless to say, I was overruled, and my sister has the honor of having the name “Anna Xanthula.”

Growing up, I don’t know that I fully appreciated how exceptional my yiayia was. To me, she was just my yiayia. We would watch “Days of our Lives” together and feed the birds in her garden. Every Sunday Yiayia and Papou would come over for a family dinner, my favorite of which was the incredible spaghetti she would make. I look back on these times and feel blessed to have been able to spend so much time with not only her, but with both of my grandparents.

I had a hard time writing this eulogy. As many of you know, most of my recent memories of my yiayia revolve around the Alzheimer’s she struggled with through the end of her life. However, I was able to recapture many of my memories through watching family videos and looking back on photographs of happier times.

Something else that helped me was finding a note that she had written to me a year after I was born. In it she writes of her love for me, and how much she loves being a yiayia. She also speaks to the future, and I am going to share some of her words with you now.

“I try to guess what interests you will have twenty years from now—I know you are going to be a very good dresser, adorn yourself with lots of yiayia’s beads, love to dance, very sociable, drive a jazzy car, worry about your hair (like your mama), probably have a pleasant singing voice, be very very good in school, probably play the drums (only kidding) maybe do some modeling—and hopefully, if I’m not around—think lovingly of me.”

Yiayia’s predictions for my life are almost 100% accurate (and would be 100% accurate if my mother had allowed me to get that silver Mustang I wanted when I turned 16 instead of the “safer,” and more “practical” Camry). I am so thankful that I got to spend 25 years on this earth with such an incredible woman.

To close, I would like to share one last story. My yiayia was 25, the same age as I am, when she lost her beloved Yiayia Eleni. This was a devastating loss to her, as her loss is to me. One difference, however, is that at the time my yiayia was pregnant with my mother, something she had not yet had the chance to tell Yiayia Eleni. She deeply regretted this, and missed her Yiayia Eleni immensely. However, she got the chance a few weeks later as she lay sleeping when her Yiayia Eleni came to her in a dream. My yiayia always spoke of this dream as if it were a visit from Yiayia Eleni from heaven. I will go to sleep every night hoping for a similar visit, and will, as she predicted 20 years ago, think of lovingly of her forever.