*Disclaimer… I am not a doctor nor a medical professional nor do I speak on behalf of any company or person other than myself. The following is just my personal experience and feelings.
Back in 2012 my husband bought us both kits from 23&Me as a part of our Christmas present. In case you don’t know much about 23&Me, they are a privately held personal genomics and biotechnology company that is named for the 23 pairs of chromosomes in a normal human cell, and they provide saliva-based direct-to-consumer genetic testing. We were super excited to get our results, not only learn more about ourselves on a genetic level, but also to participate in the future of crowd sourcing DNA information in the hope it would help scientists and the medical community better understand genetic traits and diseases and, ideally, to find cures.
I was particularly excited that 23&Me tested for two variants of Parkinson’s disease, and one variant of late onset Alzheimer’s disease, as both diseases were present in my family and had caused so much grief and heartache. It was honestly odd to me that the 23&Me website had to provide the prompt “Do you wanna know?” before releasing your results for each disease, because in my mind, how could you NOT want to know???
Turns out, TONS of people don’t want to know. But as someone who has watched these diseases devour my loved ones, there was no way I was missing out on a chance to find out my possible risks.
When I was finishing up high school, my Grandfather and Grandmother came to live with us because my Grandpa was suffering from Parkinson’s. He was too much for my Grandma to handle alone, and they hated the idea of assisted living. I still remember clearing out the hundreds of newspapers from my Grandpa’s garage in Central Park, WA, packing up their whole lives into boxes and cars, and still not fully grasping that I would never do kart wheels in their field again or sneak Snicker’s bars from their kitchen drawers.
I had spent so many wonderful childhood weekends out at that house with the two of them. Like clockwork, on the first night of my arrival my Grandpa would “surprise” me with my favorite meal as a kid; KFC drumsticks, mashed potatoes and gravy, biscuits, and my Grandma’s home made corn on the cob. It was heaven. The three of us and our TV trays, comfortably placed in the living room, Wheel Of Fortune and Jeopardy chirping in the background.
They taught me how to play Gin Rummy, took me to the movies (I will never forget the time my Grandma offered to do a DOUBLE MATINEE with me, so extra) and always made Eggo’s for breakfast with my Grandma’s famous twist (which literally meant she stuck them in the microwave for 10secs after toasting, but she swore this made all the difference in the world). They always made me feel so loved, and special, and I truly cherished the time I spent out there with them.
In stark contrast to those joyful memories, the time they ended up spending out at our home in Gladstone, OR turned out to be much more difficult.
At first, I thought it would be wonderful, and it kind of was. My family had moved to Oregon when I was going into 8th grade, it was a very difficult transition for me, and I really missed seeing my friends and Grandparents. Having them back around seemed like an answered prayer going into my senior year, but none of us was prepared for how fast the Parkinson’s was going to take over.
Thinking about that final year is still hard for me, I tear up even now. I watched a man that I felt deeply connected to, the patriarch of our family, forget where he was, sometimes forget who we were, and suffer through delusions and physical pain. I still vividly remember one day coming home from school, heading downstairs to what was formerly the spare bath, bedroom and second living room, to what had been converted to the “Grandparent’s floor”. I could tell my Grandpa was in a daze, so I sat down by his feet and asked where he was. “I have to fix the manhole covers.” He mumbled. He said a few other things, mainly jibberish and I realized that he thought he was working construction or road maintenance. “Oh, the manhole cover… Yes! We should fix it! I can help you!” And I continued to play along, talking as if we were two workers with a task at hand. He would tell me what needed to be done, and I would respond with how I was going to work on it or fix it. I’m not sure how much time passed, but suddenly in our game of pretend I saw the bewildered look on his face, confusion, and then he looked into my eyes and big smile appeared. He knew who I was again, and we were no longer worried about made up man hole covers. I didn’t know how long it would last so I hugged him tightly and told him I loved him.
I was at home with my aunt the night he died, and got the gift of holding him in my arms one last time. After I accepted what had transpired and said my final goodbye, I called my friends and went bowling. I just had to get out of the house. Out of that moment. I was so thankful he was no longer in pain. I was so devastated to lose him.
There were so many hard things about that time, but most of it stemmed from having to learn about the disease as it was already happening. We just weren’t prepared. My Dad, Mom, Grandma and myself (all living in the house together) went through our own personal anger, fear, and sadness with watching Parkinson’s. Not to mention the great financial strain that comes with trying to battle these types of diseases at home, with hospice care and nurses visits. I wouldn’t wish that crash course of how to endure on anyone.
Beyond the pain, I’m so proud of my family for banding together, and deciding that no matter how hard it was, we were going to honor my Grandpa’s request to stay home, with his family, and we made every moment as positive as we could.
After he passed, my Grandma decided she needed to leave our house and try assisted living. We all understood. After all, they had been married for over 55 years and I couldn’t imagine what it would feel like to have to wake up every morning in the room where your beloved had left this life.
I remember a visit to my Grandma at her new “apartment” (it might have been the only time I went) where we all tried to point out how wonderful her new place was. It didn’t matter what we said though, she hated it there. “Ice Cream Social starts in 15 minutes! Come on down!” Came screeching out of the PA system in her room. She looked at me blankly, “I wish I could turn that damn thing off. And no, I don’t want any ice cream!” It wasn’t long before she was back at our house.
By this point I was starting college in downtown Portland and moving into my own apartment so having some distance from this second-time-around-move-in was appreciated. I would visit my parents and Grandma often, but quickly she started to show signs of dementia, and I knew this time, at least vaguely, where things were headed.
At first she would tell me about a little girl that was stealing her jewelry. Then my mom started finding that my Grandma was hiding her necklaces in different shirt pockets in her closet and forgetting that she’d done it, thus the mystery thief. She would get agitated, angry, her appetite started diminishing, and I was honestly pissed off that this was happening to our family again. Couldn’t she be spared? Hadn’t we all been through enough?
As things for my Grandma started to get worse, I was heading into new territory in my life, falling in love with a guy (my now husband) and was dropping out of Portland State and moving with him to California. I was so excited for this new chapter, but also extremely sad and worried to be leaving my family. I made sure to get home as much as I could, but it was clearer and clearer each time that my Grandma was hurting and wanting to give in, give up.
One of the last times I saw her, she was laying in bed, in the same room as my Grandpa, and it all felt eerily like saying goodbye to him again. We knew at that point she had Alzheimer’s and I didn’t know if she would recognize me. Instead, she absolutely knew who I was and that I was in love, and then as if a twisted gift from the universe was being given to me, she started talking about my wedding. I was not even engaged at this point, but in her mind, I’d had the most beautiful wedding and she had been there. I jumped right in and confirmed the joyous event. We talked about my dress, and how we had danced, and I choked back tears as she wished me as many years with my husband as she’d had with hers.
Back in California and back at work, I got the call from my parents that she had passed. And I was again so thankful that she was no longer in pain. And I was again so devastated at this loss.
When my 23&Me test results came back and I saw those online prompts “Do you want to know” there was no question in my mind. YES.
Not having information, not having a chance to prepare, is what makes me feel powerless. Being a teenager and trying to navigate that unknown road of detrimental disease was terrifying. I wanted so badly to help, and I didn’t know how to.
I look at opportunities like 23&Me as a way to put yourself in a more powerful position, a position of knowledge. With knowledge you can plan, you can prepare, you can invest in things that might help you later on. But if you don’t know what fight you’re going to be in, what can you really do?
The first result box I opened was for Parkinson’s, and I felt a wave of relief when it showed negative. The second box, for late onset Alzheimer’s disease did not provide the same comfort. I wasn’t upset, I wasn’t overwhelmed. The positive check just kind of ran right through me. If anything, I was relieved to know.
Testing positive doesn’t mean that Alzheimer’s will happen to me, it just means it’s a possibility in my body. Like a switch that may get turned on, but could also remain permanently off. Regardless, I know my silent enemy now and am doing all I can to build up my defenses.
My first step was sharing my results with my family. Next, I started looking into what I could do to better prepare my brain. I joined Lumosity for brain games, I make an extra effort to journal, meditate, and try to maintain a healthy diet and lifestyle. My husband and I both try to stay up to date on Alzheimer’s news and donate to organizations that not only search for a cure but also help families that are currently dealing with the disease, like Hilarity For Charity.
I have a great sense of peace knowing that my family and myself are all in the know should this ever take over my body and brain. We’re all just one more step ahead of the game, and I cannot stress how much better that is than to be behind it.
When 23&Me reached out to me after my results came back in 2013 to ask me how I felt about it, I was completely open to it. I wanted so badly for anyone to understand that knowing was so much more powerful than not knowing, to not be scared by this information but to instead look at this as an opportunity to help yourself. So we started with a phone call, that turned into a skype interview, which turned into them asking if I’d do a small unpaid testimonial for the website. I said yes right away.
Before anything became of it, the FDA basically shut 23&Me down, saying they could no longer provide information about diseases, and the convo between myself and 23&Me ended…. Until 2017.
The FDA eventually granted their approval and 23&Me reached back out to me, wanting to know if I’d still share my story. I again said yes and we began talking about doing the online testimonial. I honestly thought that I’d be driving somewhere into downtown Los Angeles to sit in front of a green screen and say something like “I might lose my mind!” with a smile and positive attitude. I was wrong.
When they told me about the new “stories” section of the website, I somehow still thought I’d be blended in with other people. Then they told me they’d be sending out a documentary film crew from New York to film me, my husband, and my dog for 2 full days and I knew that I was underestimating the whole thing. Even then though, I thought only the people I shared it with on Facebook and a few random internet strangers would ever see me & my “story”.
The weekend the film crew arrived at my house I still didn’t totally know what to expect. We were so thankful that the entire crew were such nice and wonderful people, and they made me feel very included in the process along the way.
Sitting in my dining room that had been transformed into a filming area, I cried multiple times trying to talk about the loss of my grandparents. The more I tried to say what had happened, the more it brought up vivid memories, the more it reminded me of the pain and why I was doing this. I genuinely don’t want any person to be surprised by Parkinson’s or Alzheimer’s disease ever again. Not EVER. After one shoot, I wiped the tears from my eyes and asked for a short break, only to see my cool NY crew tearing up too. My 23&Me touch person came out from my kitchen and gave me a huge hug, told me I was doing great and that everyone at headquarters was so pleased with what I was bringing to the table. It took me a minute to understand what that meant, because I never thought anyone else was watching, but there was in fact, a conference room full of people just wanting to make sure I said what needed to be said in accordance to the FDA and corporate guidelines. While our director did remind me at various times to say “Parkinson’s disease” instead of just “Parkinson’s” everything else was just on the fly, it was what was in my head and in my heart. There was never a script, never a plan of how the shoots were going to go, just me sharing, and them asking a few questions.
By the end of the weekend I was emotionally drained and happy it was over, but was also overjoyed to have been apart of it. I hoped that maybe one person who got the same results that I got would see my testimonial and realize that its better to know now than to be caught off guard later on. As the crew headed back to NY there was some small mention that “maybe it’ll even become a commercial” but I just thought everyone was being nice to me.
A month or two passed and my story never made it online. I finally reached out to my 23&Me touch person, assuming that they chose not to use my story, and asked if I could have some of the images or footage sent to me to show my parents. I got a response back including my 4 minute online clip saying that they were sorry for the delay but that the BBC had seen my segment, liked it, and turned it into a commercial. I was honestly stunned. But still, I thought, nobody I know is gonna see it on the BBC.
Then, as my husband and I headed home to Oregon for the holidays this past Christmas I got another email. The clip had been turned into 3 commercials and would be playing nation wide for about two weeks starting January 1st. I was again stunned, but figured it would be on obscure channels at odd times.
We got back home just in time for New Years and on New Year’s Day I got a call from my mother-in-law saying her and her friends just saw me on ESPN during halftime of the bowl game. I instantly felt so seen. It was bizarre and strange. Then the messages started pouring in. I wasn’t sure what to do with it. People were asking if I was going into acting, if I was making bank off of the add, I didn’t even think that would be something I’d have to answer to.
The commercials ended up being two 30 and one 60 second edited clips of me essentially doing Pilates flips, running on the beach, and telling people to “live their best lives”, which to be honest, is my actual life. But I was instantly aware at how many people must be seeing that thinking that its all completely contrived and staged. I also went through the downward spiral of “Why didn’t I have someone do my hair? My makeup!?!” and “Why didn’t I work out more before they came to film???” Total internal shaming and judgement.
It went from this want of sharing the importance of discovering your possible genetic diseases, to feeling like I needed to shout from the rooftops that I wasn’t a paid actor. I got some anxiety over the whole thing, but kept reminding myself why I did it in the first place.
I’m not by any means trying to imply that I’m famous, nobody is approaching me asking if I’m “that girl from the commercial”, but it was still really weird to have people I haven’t spoken to since childhood hitting me up because they saw me while they were watching Hulu. Or hearing from our friends in Singapore, who sent me a video of them and their friends catching it during a game. When I caught the commercial myself on Bravo, I was officially in surreal land.
Maybe you saw it, maybe you didn’t. Maybe it’s still playing, maybe its done. All I know is that I’m still thankful I did it, and I’m still thankful I didn’t get paid.
Almost everyone I know has a hard time with that last part. “You should be getting something!” Is all I regularly hear. And hey, if it pops up during the Super Bowl, maybe I’ll ask 23&Me to take me out for a steak dinner. But the truth is, I signed on in the first place because I wasn’t getting paid, and because I never wanted to profit off of telling the heartbreaking story about my grandparents, or off of my family’s shared pain. I just wanted to help other people in my similar situation find support. And I really hope that in any small way, I was able to accomplish that.
This whole experience was so wonderful and so challenging and taught me some good personal lessons. More than anything it has cemented for me that as a person, I always want to be enlightened, I never want to hide in the dark. Information is so powerful, and I will continue to seek it out and use it to help me better navigate this life.
In the end, maybe I’ll get Alzheimer’s, maybe I won’t. But if it does come knocking at my door, I won’t be surprised, I’ll be as ready for this unwanted guest as I can possibly be. And that makes me feel like I’ve already put a chink in Alzheimer’s armor, disabled its element of surprise. And if I can do that now, who knows how else I’ll be able to disarm it down the road.
Thank you for reading, and if you’d like to see my whole 23&Me story on this topic, you can watch it here.
XX – Sarah