When I wrote this in 2014, there was a viral momentum that pushed memory loss and Alzheimer’s disease into the national spotlight. Then, and even now, the United States had a problem that basically needed money to have a chance to be solved. In a time when people are surviving and living through other major diseases, our friends and family members with Alzheimer’s disease — without cures or real treatments — are dying at an increasing rate.
“Americans whisper the word Alzheimer’s because their government whispers the word Alzheimer’s. And although a whisper is better than the silence…it’s still not enough.”
I was surprised to hear Seth Rogen give a speech about his mother-in-law, who was diagnosed with Alzheimer’s disease in her 50’s. It’s the sixth leading cause of death in the U.S. (and is emotionally and financially devastating to so many families) – yet it’s treated like another inevitable disease. I hung on to every word because I understood his pain.
I remembered sitting outside with my grandma one summer and listening to stories about her life. I think I was 17. I definitely didn’t know then what was to come. I wasn’t aware of what could happen to a person, even if you love them. Even if they’re the most important person in the world to you.
The comedian’s story in front of the U.S. Senate’s Appropriations Subcommittee on Labor, Health & Human Services was predictably funny, but still powerful. That committee is the one that was supposed to look at the economic effect of Alzheimer’s disease as well as how much money is going into research.
I was immediately grateful that he lent his celebrity to this cause and shared such a personal story. I was grateful that the C-SPAN video blew up online less than 24 hours after it was recorded. Honestly, if he wasn’t trying to make us laugh, I would have been crying all over my keyboard.
All I could think about afterward was that sharing stories is so important to help others understand what’s important to you.
My grandmother lived with dementia for several years. Before she passed away at 93 years old, she couldn’t recognize her closest family members.
Having dementia means cells are dying in your brain, causing what you would expect: a person to forget. First, small things, and then lots of things all at once, including people they’ve known for decades. Their brain loses the blueprints for activities that you and I find simple, like how to get dressed or eat or which people to trust. Most cases of dementia are caused by Alzheimer’s disease (though there are several others).
An important thing to remember is that Alzheimer’s and dementia are not a normal part of aging, just like cancer is not a normal part of life.
My grandmother had a difficult life. She survived World War II, years of starvation, Stalin and all of the things associated with the Soviet Union. She was forced out of her country and her home as a teenager. At almost 70 years old, she moved to the United States with her children and grandchildren
One of my favorite photos of my grandmother is her as a young girl. I love this photo but it’s difficult to imagine her this way. What were her hopes, her goals or her dreams? That’s something I can’t ask anymore.
As one of the youngest grandchildren I feel that I could never have had as much time as everyone else to know her. I’m sure no amount of time would have been long enough anyway. All I know is that she loved us, and doted on my brother and me in all of the ways she knew how — by telling us about her plants, making fresh bread, forcing us to eat her meals, and then making something new when we protested.
This was not a grandmother who’d let you eat pizza or hamburgers. I remember her laughing at all of the “American” habits we picked up at school. I’m sure we did some strange things in her eyes.
I remember when she learned to read English but couldn’t understand a word. She would read my brother’s t-shirts and ask us what the phrases meant.
She taught me to do crosswords in Russian and I still love them. The little squares remind me of her. Vines on plants and fresh bread remind me of her.
Tell Your Story
Sharing stories gets people out of the shadows, and encourages them to ask for help. But the resources they need have to be there or else it’s just talk. There is no way to prevent, cure or to slow the progression of Alzheimer’s. Unlike other major diseases, diagnoses have actually increased 68% over the past decade. According to the Alzheimer’s Association, more than 5 million people are currently living with the disease. That doesn’t include non-Alzheimer’s induced dementia, nor does it count the number of family members, caretakers, social workers and other invaluable people who spend decades of their lives dealing with the disease.
Seth Rogen mentioned that not so long ago, people who had cancer were ashamed to tell anyone. Though unfortunately cancer is still a leading cause of death, the research for its cure has visibility and financial support.
It’s not easy to share something private, but I’ll gladly do it if it will tell someone that they’re not alone, or it will remind others that we’re still fighting for our loved ones.
Politics, committees and budget meetings like the one Rogen attended happen all the time, but I’m hoping that there will be some breakthroughs given this momentum.
So I ask our Congress, the President and everyone else: What are your memories worth to you?
For years and years and years, I kept saying that I would spend some time interviewing my grandparents. They have a tremendous history both in their lives together, and separately. I won’t get into all of it here, except to share a part of an interview with my grandfather. They spent 68 years together and I think my grandpa does a great job of communicating what went on between them. Unfortunately my grandmother isn’t part of this, as she passed away in 2018.
This is a huge project with a lot of editing to go, and a totally new medium for me as well. Enjoy and feel free to share your thoughts or suggestions.
A special shout out to my parents for checking my translation. And to my grandpa, who doesn’t use the Internet — you’re the best. Now everyone knows.
Happy birthday to my brother who is actually not little at all — today he’s 21! He’s probably studying right now or making up on lost sleep time, so let me embarrass him quickly.
First of all, let me tell you what it’s like having a younger brother. When we were kids, it was someone to boss around and someone to play with. He always had a lot of friends but we stuck together, even when we didn’t like it. As we got older, he was someone who wanted to hang out with my friends and do things I did. At one point we grew into our own lives but I think we’re growing to love each other more. Now I realize that a younger brother is someone who makes you proud.
I’d imagine it’s what parents feel when their child accomplishes something. I feel proud of the person he’s become because I’ve watched him grow up (even if I refuse to believe it)! I know you’re meant to do great things, it’s just a matter of time. Whatever you plan to do, I can only wish you happiness and remind you that I’ll always have your back.
At some point you became taller than me and cooler than me. You’re tough, but you also have a big heart. You’re quick to share what you have with your friends and help them up when they’re down.
That’s just who you are and I’m proud of that. Love you, bro!
Food can tell you a lot of things about people. It can tell you what their tastes are, what kind of traditions they keep and, of course, how hungry they are.
This year my husband and I invited our family and friends into our home for New Year’s eve. Since we were raised in the same culture, we see a lot of the same foods on holidays. I don’t know if this is true for other cultures, but Russians, we put the same dishes on the table over and over.
Even though on a regular day my kitchen is a Pinterest laboratory, there was no escaping “the classics” for this party. Here’s the anatomy of a New Year’s meal in our home:
More is better
Dinner started at about 8 p.m. We begin with appetizers. Russians are pros at this part because of a simple motto: “more is better.” I mean if you love this part of a meal, a Russian holiday is your heaven. You definitely won’t see our mothers put a weak lettuce and dressing salad on the table.
One really popular salad is called Olivier (pronounced like Sir Lawrence, but named after a Russian chef). It’s potato salad on steroids, with carrots, peas, pickles and meat mixed in with mayonnaise. (Update, I forgot about this until I opened my fridge) There’s also “holodets” — a meat jelly made by cooling soup in the fridge. My mom is the expert with these dishes!
It all sounds like mystery cafeteria food, but trust me, it’s good. These foods are also really filling.
And yet, there must be fish! Usually it’s smoked salmon or pickled herring (though never at my house). To top it off, you’ll see some kind of pastries with meat or vegetables. My mother-in-law was kind enough to make them filled with pumpkin.
Entree, Part 1
Planning for the meal involved coordinating with my mother and M.I.L. I decided to roast chickens for the entree, so that came out first with a side of potatoes and vegetables. The main dishes obviously need to be large enough for the family to share and pass around several times. Don’t forget it’s possible that someone will get hungry again closer to midnight. Eat and repeat, guys.
Interlude, and second entree
After an awesome interlude of games and a makeshift photo booth, we sat down for another course. On the table were “manti“, which are basically steamed dumplings. Again, my husband’s family brought those over. These things are one of my favorite foods. Can you get tired of eating dumplings with spiced meat and onions? No, you cannot.
By this time, midnight had passed, everyone was cheery and it was time for tea. I don’t know why the British are known for loving tea because we drink it a million times a day and as a cure for everything. Unlike Americans, our grandparents tell us to never to drink anything but warm liquids with our meal. (Your stomach might explode, kids). Of course with the tea there are fruits and pastries. Maybe a cake. Ok, it’s me so always a cake.
So that’s what we ate to celebrate 2014. You might see a similar meal in a different household, and possibly on a different occasion. I don’t know what it is, but the traditional dishes make everyone feel good. There’s no guessing about whether or not you’ll enjoy it (you will). Or if you’ll leave full and happy (definitely).
And while I go tend to the leftovers, let me know what you eat on New Year’s eve in the comments. I’m looking for some new recipes…
My grandparents were over today. Grandpa got up at dinner and gave a touching speech about how he feels about his grandchildren.
He said that he wants to live and see us become successful and happy. He stressed that he would respect us no matter what — just because we are family.
Because we are family. Respect is so important to me and it was great to hear him say that. It seems that love is such a strong word for some people, so respect works just as well.
I love these people and I want to make them proud of me.
Other than that.. Listening to my grandfather yell at the Green Goblin is the most amusing thing. Clearly villains transcend language barriers.