Tuesday, January 29, 2019

12. YEARS.

I finished chemo 12 years ago. At 32, it feels surreal to say that.

Am I old enough to say it’s been twelve years since I kicked cancer’s ass? Shouldn’t this be something I say at 60? Or 80? But also, there are kids who get cancer, and not at 19 but at 2, 5, 12. So, at the end of the day, I’m not sure there’s an age when it’s “normal” to get to say that. But I’m very grateful I can.

This time of year always surfaces a modge podge (hodge podge?) of emotions. Or a cornucopia of emotions perhaps. And here’s what apparently I face at 32 and 12 years out from chemo:

This year, I wonder if I am so far removed from being sick, from thinking that life is short and I should make the most of it, that I take life for granted at times. I still find myself asking: If I die tomorrow, or in a week, or a month, will I regret or miss out on something? But, have I not lived life as fully as I could...and is that because 12 years out, when I have been told I’m at least in the clear from this disease, I live life more safely?

A couple of weeks ago, as I was trying to fall asleep, I thought: What happens if I die in my sleep tonight? It’s a very weird question to ask. And I realize perhaps one many people don’t think of (or maybe they do). But I thought for a long time about it (and admittedly probably stressed myself out a little that night):
  • How will people remember me?
  • How much time do I really have left in my life? (There was no particular reason I was thinking this--it’s not as though I was like “I have this awful headache that makes me think my head is going to split open in my sleep” and then ignored it)
  • What happens when I die? Will I remember any of the goodness in my life? Will I get to take any of the memories with me? And have I even lived a life that merits getting to enjoy whatever is after?

Here’s what continues to be hard for me (and is making my screen very hard to read right now since I’m crying as a I write this, not from sadness per se but mostly because this is emotionally draining to write and admit): I’m scared of dying. I don’t want to. I feel like there’s so much good in my life. And so many people I want to spend more time with. And so much more I can do. And I’m trying to do those things without running myself into the ground so I can ENJOY the goodness.

I started to think YEARS ahead the other day. YEARS. I thought about the fact that maybe by the time I am 37 or so, I’d want to buy a place. To pick a city I know I want to settle down in a bit more permanently and buy something.

I have tried before to look 5 years out, but whenever I have l’ve never been able to envision an older version of me. I’ve always struggled with that--it’s not for lack of trying but now that I realize it lack of certainty that I will still be here in 5 years. Let alone 10. Or 20. I’m not afraid to set an ambitious goal in my career and then fall flat on my face. I’m not afraid to say what my wildest dreams are because then I have to chase them. I’m afraid to say what my wildest dreams are because what if I start chasing them and life comes in and fucks things up, and I’m not ABLE to chase them? I’m not here to chase them?

And so here’s my other hang up: I don’t consider myself particularly reserved when it comes to goals or dreams. I try not to settle for the ordinary. I try to enjoy my life and to let others know how much I care about them. I try to be not ordinary. Because I’m aware that life is fleeting. That I could be sick again with a different type of cancer or disease tomorrow. Or I could start forgetting the people in my life and lose many other things along the way. And so it’s much easier for me to live life the fullest in a shorter term way...but I think that to achieve some of these bigger dreams and ideas and to live life to the fullest, I actually have to allow myself to imagine being older. And to believe that I can pursue a dream that will take 10 years to accomplish.

All that to say, I think I will still constantly have to walk a delicate tightrope line of looking ahead to and preparing for longer-term dreams (and believing that I will be given time to be around for that) AND never forgetting that all that believing aside, each day I’m given is not a guarantee.


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.

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