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.