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.
