Monday, January 25, 2016

Finally, a new speech: The real truth

Good morning, thank you so much for having me here—it’s truly an honor to get to speak to all of you today, and I am so very grateful for the time and energy you put into every Walk and Longest Day.

Fun fact: I maybe ate almost an entire bag of chocolate and goldfish the other day thinking about being in front of such a large group of people. Despite my 5 seconds of Association fame with my purple tutu and the thank you going out, I still get nervous speaking in front of large groups of people. And though I’ve built this comfort over time, I haven’t always been as open about my mom’s experience with Alzheimer’s.

Allow me to elaborate a little. When I was 15, my mom was diagnosed with early-onset Alzheimer’s at the age of 50. The once bold and fiercely independent woman I knew quickly became a stranger to me. My mom has always been known as a force to be reckoned with, and so it was very odd to watch her go through the initial stages of Alzheimer’s. I was a freshman in high school at the time, and it actually wasn’t until I was a junior that I shared my mom’s diagnosis with anyone. 

In fact it was only out of necessity that I told someone to begin with—my dad needed to go to the ER, and I was worried I might have to miss work to take care of my mom. I remember pulling my boss, Carol, aside—Carol has known me since I was about 3, and I was barely able to get the words out. I remember her shock as I said, “My mom has Alzheimer’s—that’s why I might be late and I don’t want you to have to worry about it.”

Carol has always been such a strong positive influence in my life, someone I can trust with anything, but I’d kept this to myself, not just from her but from everyone, because I didn’t know how to start that conversation:
How do I explain to Carol that my mom can’t be left alone or make her dinner? That while my dad is in the ER, I need to make sure she’s okay? 

Bigger picture, how do I tell anyone that my mom forgot my name? 

If I say my mom has Alzheimer’s, how will they react?

Will they treat me differently? Will they treat her differently?

With all these unknowns, my solution became not to tell anyone. It’s scary enough to say, “My mom has Alzheimer’s. She’s confused and is starting to forget things.” It’s even scarier to share the real truth about what happens as Alzheimer’s progresses.
In my speeches, I often tell the story about how my mom and I once got lost on a ride home from the airport. I leave out yelling at my mom, insisting that she needed to find the way home, angrily snapping at her:

“You are my mom, the parent.

The adult.

Be an adult.

You’re the one supposed to figure this out!

It is NOT my job to take care of you!”

As we yelled at one another, tears streamed down our faces. We were confused and lost, terrified of not knowing how we were going to find our way home. However, that terrified feeling didn’t disappear when we got home. Instead, I was terrified because she wasn’t just forgetting small things anymore. She was becoming a different person; her personality was changing.

This amazing woman, who I have had complete faith in, who was supposed to help me, guide me, didn’t know my name, and I was terrified of what was to come.

She thought we were trying to trick her. She was scared of her family, the people who wanted to take care of her, and I didn’t know how to share that with anyone. I didn’t know anyone who had dealt with Alzheimer’s.

I didn’t know if anyone would understand if I said, “My mom tried to hit my dad the other day. She’s been fighting back at him when he tries to help her, and she’s even been trying to bite him. The weird thing is, when she goes to bite him, if we move her arm in front of her mouth, she will bite her own arm. She doesn’t even seem to realize she’s hurting herself.”

As I finished my homework during my prep period, should I just toss out, “I think my mom doesn’t know how to use the bathroom correctly anymore. She doesn’t seem to flush the toilet, and she’ll sometimes even leave toilet paper she’s used hidden in drawers. I don’t think she knows how to take care of herself.”

When I heard a friend’s parent has passed away from cancer, was it so terrible that I briefly thought my mom would probably much rather have passed away sooner instead of having to go through Alzheimer’s?

Saying, “My mom has Alzheimer’s” is scary enough.

Sharing the real truth and the real feelings about what happens when she has Alzheimer’s is terrifying.

I think this instinct not to share comes from a place of love—this is not how I want people to remember my mom; I don’t want them to think that she isn’t able to take care of herself. Because this isn’t my mom anymore. I know that she’s there somewhere, but Alzheimer’s has taken away the mom I know. I want to protect her and protect the memories people have of her.

It’s terrifying. It’s scary. And hell, it hurts. A lot. But it hurts even more when you don’t have someone to talk to. Someone to share it with. Someone who can say, “I hear ya. I wish I could say something other than Alzheimer’s is sucky, but honestly, it sucks, and I’m here for you. Whenever.”
And that is where you come in. With each Walk, each Longest Day, you give the people who might never have had the courage to say, “My dad has Alzheimer’s.” or even “I have Alzheimer’s” a space to do so. You give them a community to connect with.

It still hurts, and it’s still scary…but it’s a little bit easier to go through with people on your side. It means that at a walk, maybe I’ll find someone that I can actually tell that my mom has hallucinations. Or that we had to admit my mom into the psych ward at the hospital so they can figure out her meds so she stops getting so angry.

Every single one of you in this room gives people impacted by Alzheimer’s a support system, a place to tell the stories we are too scared to share at any other time. The first year that I wanted to walk, I ended up flying home for my mom’s funeral. I remember participating in the Blondes vs. Brunettes game that spring, and it was such an oddly emotional event for me. I was in tears before the game began, wishing my mom could be there but also feeling so lucky, surrounded by amazing people and feeling so proud to be able to have played for her.

When I moved to Chicago, the very first time I spoke at a walk, I was able to do so with my aunt and cousins present. I was able to walk with my mom’s sister—and I was able to share more stories with my younger cousins about their aunt. They never got to know her when she wasn’t sick, and every Walk we participate in gives my family yet another chance to remember how great my mom was and to share the stories we never want to forget with each other and with our friends.

I honestly relish the opportunity to speak and attend events, because it means I get to share my mom’s story, I get to make her proud, and the events you all host, each Walk, each year on the Longest Day, you give every person participating a chance to remember someone they love, a space to talk about someone they care about, the courage to share something new.

So as you get ready to launch this season, to kick off your walk and longest day prep, please know how important what you do is. Every chance you give someone to share a story, to share their “why,” who they’re fighting for makes the scariest parts of this disease seem a little easier to tackle. No one will ever say, “Oh yea, Alzheimer’s, that’s a walk in the park,” and I do really hope (and will continue to fundraise and advocate) for the day that we have a survivor flower. But until then, and even then, thank YOU for giving us the time and space we need to have the courage to tell our stories, to be brave when we don’t really want to be, and to find a community that we might not have known existed but that is indeed the one we need.


Monday, November 30, 2015

That damn bikini...

About a year and a half ago, I took a photo of myself in a newly purchased bikini from J. Crew. I was getting ready for a lovely vacation in Hawaii (thanks, Chris, for getting married there), and I wanted to see just what I looked like before the whole world (read: a handful of people who honestly probably didn’t care what I looked like) saw me.

The result wasn’t terrible, but it wasn’t great either. More than anything though, I felt frustrated. I had tried on occasion since college to find a workout and stick to it, but I never really lasted more than a couple weeks. Though I hate to pin this frustration on being sick, my battle with getting back in shape has been one of the biggest challenges for me post-surgery and chemo.

Chemo taught me wonderful life lessons about appreciating my body and all that it can do. I sent an email out a few months after finishing chemo, around Easter, and included the following in my takeaways:
*Even if you think you're not the bravest or the strongest, trust that life will make you braver and stronger than you ever thought possible.
*I'm forgetting diets and counting calories. I intend to enjoy food. Enjoy being able to eat food that tastes good, that doesn't make you feel sick. If I get hit by a bus tomorrow, I don't want the last thing I think to be: "Damn I wish I had eaten that cheeseburger."
*Along the same lines, being skinny isn't all it's cracked up to be. If you want to be skinny ask your doctor for abdominal surgery followed by chemo. It makes the couple extra pounds afterwards seem not nearly as bad.

I snuck these in casually with other thoughts so that they probably didn’t seem like a big deal. After chemo, however, I took a very different approach to food than I had in the past, and so these takeaways were indeed pretty noteworthy, because I never actually believed them up until that point. Though I’m loathe to admit it, past food and exercise options included working out excessively, restricting what I ate a fair amount, (thankfully) a very brief attempt to see if diet pills worked, and (also thankfully only for a very brief time) throwing up on occasion after meals. I was never actually “good” enough at any of these habits for them to stick around for too long—I didn’t let them get to the point where they interfered too much with life, but these habits crept in on occasion when I was stressed. I also loved a yummy steak dinner with friends and family or a great meal at Taverna Tony’s in college, and I didn’t have the “strength” to push that great food away.

I walked away from chemo with a newfound appreciation for my body. Don’t get me wrong, I still felt frustrated at times or didn’t love the way I looked in things, but I reminded myself that my body had been reallllly good to me and perhaps I ought to return the favor. If my body could kick cancer’s butt, I shouldn’t push it to its limits in unnatural, unhealthy ways all to feel/look skinny. Sometimes this is easier said than done, but I will however say that I can proudly attest that none of those awful aforementioned habits have reared their heads since.

Back to the point of this post, though, that initial photo in the J. Crew bikini.

I had worked so hard to love my body and not to feel ashamed of it—and yet I felt so frustrated as I stood in front of the mirror and snapped that photo.

Frustrated by every time I had started to work out and realized that getting back in shape wasn’t going to be easy.

Frustrated that even though I was young when I was sick and was able to recover quickly, it didn’t mean I was going to bounce back physically in terms of exercise.

Frustrated that any strength I’d had in my arms and abs seemingly had disappeared after having an IV in one arm and having had pretty intensive surgery on my abdomen.

Frustrated that I waited so long to get back to working out that sometimes it felt like I never would.

And so while I have felt so damn proud of my body for all it has done for me, I have also felt so frustrated whenever I’ve tried to work out and realized that the strength I once had has faded.

To be 27 and have anxiety walking in to a workout class because I was worried I might not being able to do simple things was not easy to overcome. Amid all this were the consistent reminders from friends and family that I looked great—that I was thin and skinny. Words I’d heard before and didn’t believe I now (for the most part) trusted. I knew I wasn’t overweight, but I also knew what everyone else didn’t see: that this normal-sized body couldn’t do normal things.

The slow process of finding a workout began. 

I tried a couple barre classes, then yoga, then Pilates. All of them made my body ache, but each time I walked into a studio I felt a little less anxious and a little more brave—it took me a while to commit though. For about 4-5 months I took a couple classes each month, and then I decided that Pilates was the workout for me. I wasn’t limited by my horrible flexibility, and it targeted something I was very much so determined to get back: core strength. So in February I started signing up for more classes.

There’s no magic P90X story here—90 days later I was not ripped, and much the same way that my abs did not magically appear, my frustration did not magically disappear either.

But I decided to go all in.

In April, I knew I could commit to a boot camp which had been recommended to me by a friend. I took a private lesson and then signed up for that boot camp, 3 days a week for a month. It seemed manageable, but I also knew it would be super challenging.

It took me about 2.5 weeks to make it through class without stopping.

However, as I had learned (and even though I’d heard others say it before), no one in the studio judged me for stopping—and I didn’t get dirty looks for being the girl who wasn’t in as great of shape as everyone else. By my 3rd and 4th weeks, I, as the typical workout story goes, looked forward to class. I started signing up for other Pilates classes, and I was officially hooked.

Tomorrow will be nine years since I found out I had cancer. Nine years ago I didn’t realize I was headed down a path to being proud of my body for all it’s been through and not depriving it of the food it very much so deserves. This year has been a long time coming—a year where I’ve regained strength and also see a much stronger body in front of me.

I’m not about to post my before and after photo for anyone and everyone to see (text me, maybe I’ll be brave enough to share it; sorry, strangers and internet creepers ), but it’s kind of crazy. Today I put on a different bikini (one that actually in theory is less flattering) to compare my photos side by side. I weigh roughly the same I did when I started. I wear the same clothes. But I have abs. And a waist. And an even firmer belief that life will indeed make me stronger than I ever thought possible.

On that note, I don’t have much else to say to wrap this post neatly (let’s be real, it’s kind of a rambly mess anyway), so I’ll be over here drinking a glass of wine in that bikini celebrating nine years and feeling proud. Cheers.


Saturday, October 3, 2015

Four years ago.

Four years ago I woke up to a call from my dad telling me my mom had passed away. I don’t really remember how I responded. I remember I didn’t cry. 

I emailed friends that morning (I actually was able to find it in my gmail—because I don’t remember doing this):
Hi everyone,

I just got off the phone with my dad, and I wanted to let you know that my mom passed away this morning at around 8 a.m. in Florida. Thank you for keeping her in your prayers! She was pretty awesome and definitely deserved them. :)

By the way, sorry for the awkward subject line...I wasn't sure the best title for this email. Other options seemed far too gloomy. :P

Sending you all love this morning and hoping your week, despite the not-so-happy email, is off to a great start.


I also emailed everyone at work to let them know, and then yes, I went to work. For whatever reason it seemed like a good idea at the time (and I’m still glad I went). I’m so grateful to Margarita for indulging me and letting me go. If I recall correctly, Maggie drove me to work; my hunch is I didn’t feel up to it. I remember Maryrose brought me an iced blended from Coffee Bean which was vital to my making it through the morning, and Yvonne gave me a giant hug, which despite the fact I thought I couldn’t handle hugs, I really needed at the time. To the best of my knowledge the day was pretty uneventful. I remember attempting to book a flight during lunch, looking up how to get a last-minute flight using airlines bereavement policies; I didn’t book my trip in that moment, because it felt so weird. To be flying home for a funeral. My mom’s funeral. I think that was also the first time I talked to Chris, during lunchtime. It’s kind of crazy how that day was such a blur.

At some point that day I was able to book a flight home, and here’s what I actually do remember. The next day, as I traveled home with my cute little pup in tow, some man had taken my seat on the airplane. He said he traded with someone else for my seat, and he needed to sit in the aisle seat for some reason or another. This was very perplexing to me as I attempted to explain that whoever traded with him actually was not in a position to trade the seat. As the seat was not his but rather mine. However this was futile. He seemed convinced he had fairly traded for my seat on the airplane. I then found the man who traded my seat. And, after quite a long conversation to determine where his seat was, I eventually made my way there. I had to stop myself on more than one occasion from saying, “Sir. Please. I’m flying home for a funeral. Please just give me back my seat.” With my little pup in tow, I finally made it home to Florida. Just for fun, though, Chloe decidedo escape her bag during the last 20 minutes of the flight. She must have been just as annoyed as I was to be traveling home for a funeral, and she probably figured she could express her frustration in a way I could not.

I remember when I finally got into Florida, Chloe stuck her head out the window and enjoyed the breeze as we drove home. 

I remember the house was oddly quiet without my mom there. 

And I remember the very next day I did some excellent retail therapy, and I didn’t look at my bank accounts until January 1st. My mom would have approved.

The thing I can’t remember right now that is so confusing to me is when I cried. I must have. I know it happened. But when? Was the first time really when I read the eulogy? How on earth do I not remember?

I remember suggesting mimosas, and Chris pointing out that champagne might not be appropriate for a funeral.

I remember Chris and I had to go pick up a salad for after the funeral, and the woman at the grocery store just took a marker, drew a line through the bar code, and that meant it was free. Note to self: Bring sharpie on next grocery store visit.

I remember being showered with texts, emails, calls, flowers, cheesecake (!), and so much love. 

I remember feeling surrounded by so much love that it made me feel so overwhelmingly lucky during a not-so-happy time.

I remember we drank.

I remember I was supposed to do my first Walk to End ALZ that year. However I was home getting ready for a funeral instead.

I remember I started to realize I really wouldn’t get to see or talk to my mom ever again, and that pretty much sucked. 

When Chris told me I should write it and practice it, I remember being angry, because I didn’t want to think about it just yet, but my first draft ended up being my final draft anyway that night.

This isn’t one of those eloquently or wittily written recollections of a crazy time in my life. This is a scattering of memories. Something to help me not forget that day. That week. That really bizarre time in my life.

Four years ago. Wow. Mom, you are missed.

And, just for my own "fun," things I found while searching through my inbox:
A conversation with Brittany as she was prepping for her first day of school:
Brittany: well i'm glad to hear you sound pretty balanced
me: haha well we'll see but for now yes…as long as balance includes ice cream

A response to a friend’s question about services and plans for my mom’s funeral: “This weekend we'll just be hanging out, probably drinking…haha kidding, a little”

An email to myself with a shopping list: coated aspirin, beer
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