This photo isn't easy to share. Neither is the story that goes with it.
I had just climbed the highest point of the North Rim of the Grand Canyon. My parents and I were on a vacation visiting national parks across Utah and at the last minute we decided to check out the Grand Canyon. My dad had traveled there with his dad when he was younger and I thought it would be a nice moment for he and I to share. My dad's the one who taught me photography. His dad was also a photographer, and it kind of got passed down to me. My mom, who simply doesn't do heights, waited by the restaurant as my dad and I ventured along the trail to the rim.
When we got there, I climbed up this cliff, leaving my dad below with my camera and his (it was too sketchy to make the climb with my camera in hand). I had wanted this epic photo of me basically on top of the world. "Take a photo with my camera," I hollered at him. He looked at both cameras, confused. "It's the one around your neck," I said. He aimed my camera at me. I looked down and told him the lens cap was still on. "Why can't I see you?" he asked, just looking at the screen on the body of the camera. "You have to look through the viewfinder," I responded. "Okay, I have the perfect shot," he tried to convince himself. "You have the lens cap still on," I said. Tears were welling in my eyes. He didn't understand how to use a camera anymore. He could manage an easy digital one or his phone, but not a single-lens reflex camera (SLR) similar to what he taught me to use years ago, the one he gave me that he got when he served in Vietnam.
My dad took a photo of me. Luckily for me, it was from far away, because I couldn't stop the tears running down my face as I stood there. There, on top of the world, while my entire world was shifting below me. He was fading away right before my eyes. I climbed back down and we walked back to meet my mom at the restaurant (which is where she took this photo of us). The walk back to meet her was silent between my dad and I. We both knew something huge had just happened, but didn't want to acknowledge it with any words. Instead we kept moving, trying to enjoy the view.
This was only two years after my dad was diagnosed with early-onset Alzheimer's. It's been seven years. He's in the middle stage now, and doesn't really take any photos anymore. He goes on walks and listens to music. He's still the same human deep in there, but the person I grew up knowing, the man who taught me the art of photography, the fearless man who I used to go on epic hikes with, he's sitting back on the rim of the Grand Canyon with his own camera in hand, capturing moments of life and smiling.
This has been a very challenging piece to write. In fact, this is my second attempt at putting my thoughts into coherent words surrounding the subject of Alzheimer's. To be honest, it's really hard to go into all of it without sounding like a complete Debbie Downer. It's challenging to voice my thoughts on the disease without completely breaking down. I hate it. I truly and honestly hate the disease with all my heart. But then again, who enjoys it? No one. There was this joke on Orange Is The New Black this season, where the woman who is going in for chemo tells the young boy sitting next to her: "So the doctor says to the patient, 'I have bad news and more bad news. The first bad news is that you have cancer. The second bad news is that you have Alzheimer's.' The patient replies, 'well at least I only have cancer.'" I laughed. Sometimes you really just need to laugh about it. That's why I'm so grateful for causes like Hilarity for Charity. It brings awareness to the disease without completely depressing everyone. But to be fair, Alzheimer's is a heavy subject, and a lot of people don't like to talk about it. I get that. I truly do. But I have a hard time withholding myself from voicing my thoughts on matters such as this. Which is why I continue to write about it.
Last week, my parents and I went to the Alzheimer’s Disease: Continuum of Care VIII, North Bay Education Conference for Families and Professionals (woof, say that five times fast). My dad was on a panel there that consisted of early stage individuals. He was the only man out of four people, which could be due to the fact that women are more likely to diagnosed with it than men. That was something I learned there. Statistically, there is a 66.7% chance for women to be diagnosed in her lifetime. See, there I go again being a D.D. (Debbie Downer), but this shit is real and really frustrating to hear.
It’s also frustrating to know that these people suffering from this disease are now being defined by just that. Which is why I sometimes get agitated when people ask me how my dad is doing. I completely understand that it is out of love and concern, so it's not technically the question, but I guess it's more the way I have to answer it. Often times, I find myself talking about his health and well being more than telling people about him volunteering at a salvation store, participating in Meals on Wheels, and joining up with a wonderful support group advocating for those suffering from Alzheimer’s. Actually, that's a lie. I try to brag about that as often as I can. What really upsets me is the fact that I will never be able to look these people in the eyes and answer "you know what, he's cured!" Because there is no cure, not yet at least. There is no quick fix. Those that have it and those that know someone with it, we all just have accept it and move on.
And many people don't accept it. A lot of people hide from society because there is still a large stigma surrounding this disease and elders in general. That's why it's so phenomenal to see those that not only accept it but speak up about it as well. That's what my dad and so many members from his support group are doing. A couple months ago, they went up to the state capitol to voice their stories, and before that, my dad spoke at our hometown’s Walk to End Alzheimer’s event. He might seem like a shy guy, but he sure as hell is making his voice heard through these types of programs. I couldn't be a more proud daughter.
Today is the summer solstice, the longest day of the year. For those that have someone in their life suffering from Alzheimer's, that is how most days can feel to them. While I don’t live at home with my parents, I am aware that it is no easy battle. Both of them struggle each day with various obstacles, but maintain an overall positive outlook on things. It could be very easy for them to sink into depression or become so frustrated that they just want to call it quits. But they keep going. Among the many things that my parents have taught me, it is just that. To keep fighting the good fight. We try not to lose sight of what is important and always aim to look at the more positive side of things instead of the negative. We chose to embrace what life throws us and charge on.
At the event last week, the closing speaker was this gentleman, Alan Arnette. He is a mountaineer and Alzheimer's advocate. If twenty years younger, he would be my future husband because he has climbed the seven summits and has some of the most amazing stories. He also dedicated his ventures to his mother, who passed away due to Alzheimer's. Quite a remarkable man and a true inspiration to make a difference in anyway you can. Which got me thinking...
As I have mentioned before, I am an avid hiker. So today, being summer solstice and all (a.k.a. the longest day), I decided to do my own miniature summit climb and dedicate it to my parents. It was no Mount McKinley, but it was a good three mile hike accomplished in under forty-five minutes. When I got to the top of the hill (and I have to say hill, because it seems like that in comparison to Alan Arnette's treks) I paused. I stood there and took in the entire view of Los Angeles. As I had climbed up there, I was constantly reminded of all of those that continue to push forward, that continue to fight, and those that aim to make a difference in the world regardless of their circumstances. I thought of how much I have to be grateful for, it's ridiculous. I'd be lying if I said I this isn't the happiest (and healthiest) I've been in several years, but I know life is always full of highs and lows (good climbing metaphor, right?). Seriously though, all my happiness is due to their amazing ability to find the joy in life in the smallest of moments. So, in honor of my superhero parents that have raised a truly stubborn, feminist, independent, outspoken, and silly daughter, I just have to say:
Yesterday morning I was listening to NPR (as I do most mornings when I'm getting ready to go to work) and a piece came on the BBC news regarding people suffering from Dementia. I stopped while putting on my makeup, fearful that I would have to reapply it due to the emotions that could occur while listening to something that touches so close to my heart. The words the reporter spoke echoed throughout my apartment as I stood motionless in the middle of the room, taking all of it in.
There is so much to be said about this disease. So much I am still observing, analyzing, and studying. There are so many days when I want to punch something or scream on the top of my lungs with utter frustration. Instead, I remain stagnant in my car, weeping at the lack of control my family and I have with all of this surrounding us. The crying is not so frequent, but of course it arises when least expected (probably due to traffic jams and people driving like maniacs down the 101). As they say, it's the straw that breaks the camel's back, and that's when I find myself staring at an empty shelf at the grocery store with tears streaming down my face.
When something so heavy enters your life, it's easy to focus on the sadness or the negativity of it all. It's quite easy to sink into those feelings and escape from everything else. I try not to visit that place as often as I do sometimes, but it's challenging when forced to encounter some life altering decisions on a somewhat daily basis. Then I find myself taking everything so seriously and not enjoying the moments I am physically a part of because I am lost in some of those thoughts.
During this holiday season though (compared to those past), I find myself feeling especially grateful. For the first time since 2008 I was able to spend Thanksgiving with my parents and extended family. The last time I was able to sit at my aunt and uncle's dining room table, my Grandma was sitting across from me and I had a horrible case of Laryngitis. Obama had just won the election and I was beyond annoyed that I couldn't voice my political opinions around the turkey being served.
Over the past few years, I have celebrated this holiday with a series of friends in Los Angeles, Connecticut, New Hampshire, and New York. Those people I consider to be a part of my family just as much as those related to me through blood or marriage. It's those people and those moments shared with them that I treasure so much since I was unable to visit Northern California over all these years.
Last month, my cousin and I (plus her eight week old puppy) were able to drive up north for the weekend. We were able to sit in the comfort of our old homes and reminisce over the moments we shared between those walls. While driving along the I-5, we even blasted the Spice Girls and Backstreet Boys- songs from our youth. We remembered those music videos we used to create for our family, and realized how awkward that must have been for everyone observing. Seriously, who wants to watch their daughter lip-sync "2 Become 1"? Our parents definitely put up with a lot during our Pop music phase.
It's challenging to describe how momentous this trip home actually was for me. Not only was it amazing to spend time with my cousin (who I originally planned a cross country road trip with when the movie "Crossroads" came out), but I was able to celebrate my dad's birthday with he and my mom. I can hear my grandma repeat the words in my ears as I type this: "family is everything," and I can't help but tear up a little bit. My family really does mean everything to me. From the hikes with my dad, to baking pumpkin pies with my mom, to sitting at their kitchen table with a cup of coffee and the newspaper; whenever I'm at home there is such utter happiness beaming from within me.
Those simple moments are easy to bypass and ignore, but it's those moments that make everything so completely worthwhile. It's easy to get sidetracked with the technicalities of a disease, and become almost obsessed with everything going on internally. That's not what life is about though. It's about the moments that you share with those you love and it's about celebrating the simple things in life.
Sometimes we just have to put our lives in perspective, and lately one way I have been doing that is by watching the video of my dad at the Alzheimer's walk back in October. There is nothing but love and pride that I have for him, and this speech is a true reflection of all that he is as a person. I feel the need to share it at this time for many reasons, but mostly because I want to spread some inspiration to others who might need it right now.