Saturday, September 20, 2014

Walk to End Alzheimer's Round 1: North Shore

Good morning, my name is Alex Magiera, and I am honored to be speaking here today. I'm a member of the junior board for the greater Illinois chapter of the ALZ association, and I also was a part of the Young Professionals Committee in Los Angeles, which is where I did my first walk 3 years ago. Each walk has held a very special place in my heart, and this one today is particularly special for a few reasons:

First, it's my first walk wearing this purple tutu. I recognize it's a bold choice, and I'm sticking with it even this early in the morning.

Second, I'll repeat what I said before in that I am truly honored to be standing and speaking in front of you today. Here's hoping I don't get rushed off the stage any time soon.

Third and perhaps what I have continued to be most aware of since I committed to speaking is that this is the first walk where I truly feel I'm "home." I grew up in Northbrook and Lake Forest, and I am lucky to be walking with members of my family for the first time today.

That said, there's one family member I wish could be here with me--and I simultaneously recognize that if she were here, I wouldn't have the same compelling reason to walk. That family member is my mom.

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. At first it was the little things: she would forget to pick me up from school, or she would go to pick me up from school instead of work, and we once got lost on a drive home from the airport.

Then, when I was 16, one day my mom asked, “What’s your name again?” I don’t even remember what I said in response. Even as I was writing what I would say today, there is much I feel I have forgotten, because Alzheimer’s just didn’t make sense to me at the time. I could process other diseases, but Alzheimer’s wreaked havoc on my family as we tried to figure out how to handle the loss of my mom in so many ways.

I still remember the afternoon of my high school graduation (in case you were wondering, I'm a Loyola Rambler...). At this point, my mom had been battling Alzheimer’s for about 3 years. Just a few weeks before, my family and I had flown to North Carolina to see my brother graduate from college, and after my mom had made it through traveling and attending his graduation, it didn’t occur to us that much might change in a few weeks.

However, a few weeks of early-onset Alzheimer’s had a huge impact. The day of my graduation, my mom refused to get ready to go with us, insisting that the clothing my dad had laid out for her was for children and that he was trying to trick her. Just five minutes before my brother and I were about to leave to go by ourselves, my mom changed her mind and decided to join us. Fortunately, graduation was fairly uneventful, and on our way home, we decided to stop to get some dessert at Baker's Square to celebrate that night. As we made our way to the table to sit down, my mom stopped and started yelling towards our table while looking at my dad: “I’m not going with him! He hits me! I am not going with him!”

A moment of uncomfortable silence followed as we decided what to do—I was ready to leave, but my aunt insisted: “No, Alex, you deserve to be able to celebrate! We can have dessert! It’s okay!”

With Alzheimer’s and any life-threatening disease, there is this inclination to hold onto what is “normal.” When I was 19, I was diagnosed with cancer, and I remember trying to maintain normalcy as much as possible—so chemo would just be a blip in my life, not the definition of my life at the time. In the very same way, that night at graduation and all throughout my mom’s fight with Alzheimer’s, my family and I fought the battle of how to maintain “normalcy.” The night of graduation, normalcy was having dessert with my family, because if my mom could make it through dessert, then maybe things would be okay. We could do what “normal” families do.

However, there is nothing normal about what happened that night or what Alzheimer’s does to anyone. We didn’t have dessert that night—instead, I asserted that “This is my graduation, and I would really just love for us to go home,” because I hoped that that would calm my mom down. My family could feel the heat of the eyes of the restaurant guests on us as my mom continued to claim, “He hits me! He hits me!” and at the moment, all we could do was smile a little with tears in our eyes as we reassured my mom, “It’s okay. We’re going to home, and it will be okay.”

We went home, but in just three years, Alzheimer’s had taken from my mom the ability to enjoy being with her family, to love life as she used to, and so it wasn’t okay. Instead, she feared the people who loved her the most. My parents would have celebrated their 40th wedding anniversary the year after my mom passed away, and my dad has always been head-over-heels in love with my mom. It might seem unthinkable that so many years of marriage and happiness can seemingly be erased, but for my mom, those memories were and instead she was very scared. She didn’t know what was going on—where she was, who she was with, and for about a year and a half, she actually was very angry, fighting back against the disease and as a result fighting back against those who took care of her.

After my freshman year in college, my dad finally made the choice for my mom to live in a nursing home. Up until this point, my dad had taken care of her at home; we had a nurse who came nearly every day to help my dad, and though he once said he would never put a hospital bed in our house, my mom had her very own bed in their room. I have never before witnessed or known the kind of love my dad showed for my mom. It absolutely broke his heart for her not to be at home with him, and he scheduled his days around her. My dad is 13 years older than my mom, and he always envisioned growing old with her…with her taking care of him, instead of the other way around. I speak with my dad everyday, and at that time, his daily schedule either consisted of things to do “before I go visit your mom” or “after I go visit your mom.” Even when he was taking me to chemo daily and making sure I was okay, he would make time to go see her once I was home from the hospital and resting.

My dad finally made the choice to have my mom come back home with him after two years of her being in a nursing home--she had her own room in our house, with a hospital bed and a lift, and a hospice nurse who regularly visited her. My dad always speaks about the joy he experienced just being able to have breakfast with her, to see her face, to see her smile even though she didn’t know who he was. He loved to be able to say goodnight to her, and when he woke up, he loved to get to see her right away.

The year my mom passed away, we found out my mom had cancer. I remember sharing this news with my best friend who to this day also calls my mom “Mom.” She asked me: “Alex, so what happens? Is there surgery? Chemo? What’s the treatment?” …and my heart sunk. I nearly broke down as I explained to her: “Megan, she’s 'do not resuscitate'. We’re not going to treat it, and it’s not going to go away. I’m so sorry.” 

Just a few years before I'd told Megan that I was the one who had cancer, and I immediately was able to say, "...but here's the treatment. Here's how I'm going to get better!" And if my mom had not been DNR, yes perhaps we might have attempted to treat it, but the reality is, even if the cancer went away, even if the treatment worked, she still had Alzheimer's, there is no way to cure or even slow Alzheimer's, and that's unacceptable.

My brother, dad, and I had been fearing and anticipating this moment for years, and so the news of her illness and knowing what was ahead, albeit scary, was not unforeseen. However, for some of our friends and family, it was, and it was very difficult for them.

On September 29th 2011 just four months after my dad told me my mom had cancer, he called me and told me my mom had been having trouble breathing. He also told me the nurse from hospice said unless my mom were to take in more fluids, she would only be able to live for about 2.5 more weeks. Four days later, on October 3rd at around 8 am, my mom passed away. After ten years battling, my mom finally got to rest.

I can't change the fact that my mom isn't here today, and I can't help but be glad that after her brave fight she's no longer in pain or scared. That said, I refuse to accept that her fight is over--I just think I've got to do some fighting of my own, and one way I choose to fight is by walking and raising money and awareness for Alzheimer's research and treatment. So really, why do I fight? Why do I walk each year?

Well, I walk in honor and memory of my mom; I'm here with my mom's sister and my cousins, and it breaks my heart that my cousins never really got to know my mom. It breaks my heart that I didn't.

I walk because I don't want to have to walk for my friends and I don't want them to have to walk for me. I don't want to forget the people I love and care about, and I don't want them to forget me either.

I walk because I'd like to see a survivor flower at future walks. There is something so sobering about being at these walks. I feel energized as I meet other people who are as committed to eliminating Alzheimer's as I am, but I wish we didn't even have to think about Alzheimer's as a threat. The only way we're going to get there is if we continue to raise money and awareness of just what the disease does.

So before I actually do get rushed off the stage...I'd just like to thank you all for being here today and listening to me share my story. It's an honor to be here with you, to walk with you, to know we're fighting this together, and the only way I could imagine today being better is if my mom was wearing a matching tutu and walking with me.

If you'd like to donate or join my team for next week's walk, you can do so here.

Sunday, May 4, 2014

Top 10 Reasons to Walk to End Alzheimer's

10. Alzheimer's disease is the 6th leading cause of death in the United States. Alzheimer's cannot be prevented, cured, or slowed unlike the other top ten causes of death in the US.

9. More than 500,000 seniors die each year because they have Alzheimer's. If Alzheimer's was eliminated, half a million lives would be saved a year.

8. While the number of deaths due to HIV, stroke, heart disease and prostate cancer all declined between 2000 and 2010, deaths attributable to Alzheimer's increased 68 percent, according to the Alzheimer's Association. (source)

7. If you're a woman, Alzheimer's is as great a threat to your health as breast cancer. This means, if you're a man, Alzheimer's is as a great a threat to the health of your sister, your wife, your aunt, your mom as breast cancer is.

6. Funding for Alzheimer's "still remains a fraction of the $2 billion that the NAPA Advisory Council recommended."  We need to keep raising money to ensure we see a change happen.

5. By 2050, the number of people age 65 and older with Alzheimer's disease may nearly triple, from 5 million to as many as 16 million, barring the development of medical breakthroughs to prevent, slow or stop the disease. The need for research and medical developments is URGENT and cannot wait. Alzheimer's isn't slowing down so we can't either.

4. Every 67 seconds, someone in the US develops Alzheimer's. Think about how long it's taken you to read this--how many people have developed Alzheimer's in that time?

3. We all deserve to grow old, #tbt, and say the words "Remember when?" Alzheimer's robs us of the ability to grow old and gray together with our friends, to enjoy blissful retirements, to be badass seniors who dance like this.

2. We need to make noise. "Americans whisper the words Alzheimer' needs to be yelled and screamed."

1. There are no survivor hats or shirts at Alzheimer's walks, and there should be. There's something to be said for going to a walk and celebrating the survivors you see or to see someone fighting whatever it may be that the walk/event is raising money and awareness for. However, when you go to an event for Alzheimer's, there are no survivor hats or survivor t-shirts. We walk in memory of and in support of those who fought or are fighting Alzheimer's. It's a sobering reality of the disease, but it doesn't have to be reality. We can make a change.

Please consider walking with or donating to my team, We Kick Alz! The walk is on September 28 this year.

Want more information? Read the 2014 Alzheimer's Disease Facts and Figures--a report from the Alzheimer's Association. (A lot of these facts came from this report.)


Some more reasons courtesy of BVB in LA:
Board of Directors meeting for the California Southland chapter of the Alzheimer's Association
Mom's Birthday Year 1

Wednesday, April 30, 2014

What do we need to know and believe about ourselves, our worth, and life?

Yesterday, my former roommate, Cassie, who is currently an assistant school leader at my old school texted me to loop me in on one of my students. This student has been having a tough time recently and feeling very sad--and not just elementary-school-student sad but grappling-with-very-difficult-things sad.

Cassie told this student that he/she (I'm avoiding any revealing details about the student) could select an adult to write to and that that adult would write back. (To be clear here, Cassie also is taking many other steps here to support this student--and this is one way to allow him/her to find a way to express his/her feelings.) My former student asked to write to me.

I've now written two letters, and this got me thinking about all the things I wanted and still want my students to know and believe. I started with the following:

...and today I wrote the following:

What are the essential things that children need to hear, deserve to hear, and must believe about themselves, their worth, and life? For that matter, what do we as adults need to hear, what do we deserve to hear, and what must we believe about ourselves, our worth, and life? I'm starting a list (the first four have already been shared)...but I need help. (Please ignore the fact that they are a mix of first and third person.)
  • It's okay to feel sad, and it's okay to admit you are sad. Doing so makes it less scary.
  • You are wonderful, strong, caring, and funny.
  • Never forget how special you are.
  • I am important.
  • 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 deserve to be happy.
  • Life will never give me more than I can handle, but that is not to say I will not have to ask for help.
  • It's not easy, but I can and will have the courage to get up and try again even when things are tough.
  • Never ever forget to say I love you.
  • Be kind.
  • Love wins.
  • A cheerful heart is good medicine.
  • Laughter really makes things better.
  • There is goodness all around you--sometimes it's hard to see, but trust me, it's there. If you look hard enough, you can find goodness.
  • I deserve to be loved.
  • I am enough.

Monday, April 21, 2014

Happy mom's birthday to you

(Fair warning: there's a noticeable increase in my use of swear words in this post. I'm no Wolf of Wall Street, but you've been warned.)

This morning began with a phone call home: "Happy Mom's birthday," I told my dad, and a few hours later I texted my brother the same thing. It's a weird thing to celebrate--but let's be honest, no weirder than celebrating my mom's life and her awesomeness two and a half years ago at her funeral.

I tried to write last night, but my brain just couldn't process it. Perhaps it was the after effects of the vodka on the rocks I had the night before (because of course, my mom's signature drink couldn't be margaritas, but no, straight vodka on the rocks), but it just wasn't happening. Instead, I spent most of my night flipping through photos of my family--many of which included my mom. I re-read things I wrote two and a half years ago, and I kind of felt pretty awful.

I give myself 1% of the year to feel shitty. I figure 3.65 days of the year I'm allowed to have all out crappy days. 2 of them are the same each year: October 3rd, the day my mom died, and April 21st (or thereabout depending on when it actually makes sense for me to celebrate her birthday. Vodka is not a Monday night type of drink for me).

Last night it was a 1% day. As I looked through photos of my mom, I was reminded of just how amazing she was. She was selfless. She was caring. She was compassionate. She didn't give a shit what people thought, she knew what she wanted in life, and she went after it. She was always up for a challenge, and she was always on the go. She lived life the way I think most people strive to, and she was pretty damn awesome.

This should make me feel great, right? The fact that my mom was such a wonderful woman, and it does.

...but it also makes that loss all the more difficult. I didn't lose an okay mom. I didn't lose a mom who maybe cared about me or who sometimes told me she loved me or who believed in me 75% of the time.

I lost a mom who cared more about her family than I can really even process.
I lost a mom who told me on a daily basis she loved me.
I lost a mom who believed in me without wavering or doubt.

So there I sat, sad girl in pajamas, eating sushi on the couch, flipping through photos, thinking, "Man. This hurts."

I very much so believe in my ability to will things to happen, to make a choice in life and to see that it happens, but the reality is, I can't will my mom to be alive and healthy. I actually don't have a say here. I don't get to call my mom on a daily basis to ask her advice, and I'm going to have to keep deleting all of those damn emails that are filling my inbox about "gifts for mom" as Mother's Day approaches. All those questions I want to ask my mom just aren't going to get answered right now.

*sad violin plays*

...okay so yes, yesterday I tried to close my eyes really tight and see if I remembered my mom's voice. I don't. I tried to think about the last memory I have of her when she was 100% healthy, and I found myself thinking back to the end of eighth grade. We're talking 14 years now. It's hard, and it gets scarier the less I remember of her. I get nervous at times I'll forget her.

However, then, my better judgment kicks in. I read her eulogy and what I said at her memorial mass.

...and I find myself constantly arriving at the same conclusion:
Yes, losing my mom was easily one of the most painful things I've ever gone through. And yes, it still hurts.

But oh my goodness,
how fucking lucky were we all to know her?

I would almost argue that the real people who are unlucky here are those who didn't know her. I feel a little envious of those who knew her better than I did.

...but I also feel so unbelievably blessed to have had such a wonderful mom for the time that I did. It almost feels greedy to say that I should have had more time with her, because I got to know her for longer than many other people did, and the impact she had on my life is immeasurable.

I got to reap the benefits of having such a bad-ass mom. Don't get me wrong, I'm sure my mom cringes over some of the choices I make (Mom, it's cool, I do too), but overall, if I dare say so myself, I think my parents raised some pretty awesome kids.

And so I find myself going back and forth between two very different sets of emotions:
1. Feeling sad (and well, feeling sorry for myself), because really? Mom, really, you had to leave me so soon?
2. Feeling a kick in the ass from my mom reminding me: Life is tough; suck it up, because at the end of the day, I'm very lucky.

I probably sound terribly arrogant saying this, but, on a daily basis, my life is fucking fabulous. I'm actually not quite sure why I've been given such a phenomenal life with such amazing people with whom to share it, but I have. ...and each day that I got to spend with my mom (when I was smart enough to listen to her and not being a punky child) has contributed to the awesomeness of my life. Each day that I wake up and do something that would make her proud, well, it continues to contribute to how wonderful my life is., really, if I were to re-write this post, I'd probably write about how lucky I am and how much you should be jealous of me, because I had the privilege of having such a wonderful mom, and though I may not get to see her on a daily basis or talk to her at all, I get to go through life with her in my heart, which, hey, really isn't too shabby.

Happy mom's birthday to you; may you be as lucky to know someone as amazing as she was at some point in your life.


Monday, March 24, 2014

High five for scars and fevers

I spent today with my apparent new best friend of 2014: Advil. You see, Advil has been a pretty crucial part of the past month of my life. Despite the fact that I don't like taking medicine as I consider myself to be very tough, sometimes things like broken elbows or fevers require me to take medicine.

(Fun fact: I've had a bottle of 80 Advil that I purchased the weekend I fell. I have 49 left (discovered this today when the bottle spilled...)--which means I really haven't taken very much medicine anyway since I'm allowed to take 9 a day).

This morning, or if I'm being really honest, nearly this afternoon, as I was lying on my couch, I briefly got a little angry at my body. Seriously? You are just getting over a broken bone and think that now is an appropriate time for me to get a fever? I disagree with you, body. I issue a strong statement of dissent.

The moment quickly passed, and I found I was reminding myself of something I know but maybe sometimes forget: my body does a lot for me, and I should really be grateful for it.

Now don't get me wrong, my body and I have our disagreements. I will often push my body to its limits, because I think I'm oh-so-tough. I often don't give my body a break when it needs it. For example, I still remember being offered a wheelchair when I needed to have some lung test while I was going through chemo. Let's be honest: I probably wasn't looking so great if I looked like I needed a wheelchair. I refused, however, and felt a little bit upset--really, body? Can't you keep it together?

I also have moments where I get distracted by things and people around me, and the words "juice cleanse" seem intriguing. Though my pant size is a single digit, I'm no longer as little as I used to be in high school; I know, it sounds so awful (sarcasm marks), but hey, sometimes it's hard to ignore the allure of new diets and trends.

However, in time, I've come to realize my body is pretty damn strong, and I ought to give credit where credit is due (instead of getting sucked in to a world of skinny jeans and feeling down on my appearance). Sure I have a few scars, and yes I'm not always stoked to take a day off from work, to admit I'm not feeling well, or to feel like my body at any point is limiting me, but if I look at all the evidence, well, it's in favor of my body being strong and useful--and in fact, not limiting me.

My scars are reminders that 1. My body can handle cancer. Win., 2. My body can also handle my clumsiness and failed attempt at using a steak-knife to cut a plum when I was 10, and 3. Shark bites happen (I kid. It was the crazy tumor--but I like referring to it as my shark bite).

Each day, I get to wake up, make breakfast, walk to my car, drive somewhere--my body allows me to travel, to sleep well, to move, to walk, to dance, to talk, to write. If I'm thinking really big picture, my body allows me to live.

Sure, perhaps today there wasn't a lot of dancing happening, but maybe, just maybe, instead of getting angry at my body for failing to be healthy 365 days a year without a break, I should cut myself some slack and rest. Take care of my body after all it does for me. So in the spirit of being grateful that in a day or two I'll be good as new (and being patient with my body as it gets back to 100%), I'm heading to sleep early. Thanks for being awesome, body, for putting up with fevers and scars and still coming out on top. It may be time for a self-five.

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