Logo for Saybrook University

Posts

"...In the hardest of moments, we can also live the fullest of lives."

By: Aimee C. Juarez | 05 Aug | 2 comments

 

Photo of Mari courtesy of the Grace, Joy, and Healing blog.

While perusing my Facebook page this afternoon, I learned that the friend of a friend—a woman named Maria—was recently hospitalized in her battle against an inoperable brain tumor.

Maria's name sounded familiar so I looked her up. I know her, I thought. But I don't know her. At least not formally.

I remembered her as Mari—her high school nickname. In my memory, she was one of those popular upperclasmen who roamed the halls of St. Brendan High School oblivious to people like me—the outcasts who generally blended into non-existence—more than 15 years ago.

That past became irrelevant as I read my friend's plea to keep Mari in our thoughts and prayers. Within minutes of reading the request, this same friend posted a link to Mari's blog, Grace, Joy, and Healing. I followed the link and read what Mari's written about her illness.

In 2008, Mari began experiencing neck pains that, over time, spread to other regions of her body and increased in severity. She began experiencing headaches, shoulder pain, a limited range of motion in her neck and right shoulder, a weakness in the right side of her face, hearing loss, pain in her jaw, and dizziness. "The symptoms," Mari wrote, "would come on gradually causing me to wonder if I had done something to cause myself an injury. There came a point where it was undeniable that something was not right."

In November 2010, Mari was diagnosed with a large, atypical tumor in her head and neck, according to her blog. After two MRIs, a CAT scan, an angiogram, a carotid angiogram, and a nuclear medicine scan, doctors found that the tumor, which is larger than six centimeters in size, runs from an area near her ears down to the base of her skull. In terms of depth, the tumor runs deep into Mari's skull just behind her right eye. It's encased the carotid artery, she wrote, and, consequently, affects several nerves, which has caused the pain and limited motion she's experienced.

Mari's doctors told her that a biopsy was too risky for a tumor like this and, given its placement, surgerically removing it is impossible. Since January, she has been undergoing radiation treatment in the hopes of shrinking the tumor, which would also alleviate the symptoms she's suffering.

Mari's about to turn 33 in two weeks. She's older than me by a year and three weeks.

I had been preparing to write this post, which was initially about rekindling a connection with one's true self based on the writings of author Parker J. Palmer, when I came across Mari's story. I knew I had to bring her into my narrative somehow, especially after I read her January 5th, 2011, post where she wrote:

"A mentor of mine told me that during the hardest of moments we can also live the fullest of lives. These words really resonate for me. The hardest of moments help us to appreciate and become present to the wonder of being alive, sharing with those we love, and the beauty all around us. It's put into perspective for me how precious things we often take for granted are."

It's amazing how we take life for granted on a daily basis. We do it so much, our lives become unsustainable, chaotic, and complex without us really knowing why until everything spirals out of control in some way or another. That's when our hardest moments force us back to our true selves.

In our daily lives, we take in external perceptions, ideas, and suggestions without question and make them our own. We do this until we begin living lives that aren't true or fulfilling to the yearnings of our own, inner selves. This pattern draws us inward causing a disconnect that, eventually, desensitizes us to others and ourselves. It makes us negative, short-sighted, and hard to be around.

Then hardship strikes. It hits us all differently, but serves the same purpose. It acts as the catalyst that jolts us back and begs us to, once again, live sustainably by embracing our true selves—the self that got eclipsed by those external perceptions, ideas, and suggestions.

The hardships I've experienced in recent years pale by comparison when I think about Mari's story. Someone who responded to my friend's posting about Mari summed my feelings up nicely: "...Here I am feeling sorry for myself for dumb reasons and then I go and read just a little [of Mari's blog] and it made me rethink everything."

In his 2000 book, Let Your Life Speak: Listening for the Voice of Vocation, author Parker J. Palmer wrote that life is like a pilgrimmage where

"...hardships are seen not as accidental but as integral to the journey itself. Treacherous terrain, bad weather, taking a fall, getting lost—challenges of that sort, largely beyond our control, can strip the ego of the illusion that it is in charge and make space for true self to emerge."

In my travels, I've learned that the road we follow on our pilgrimmage of human growth is unique to all of us and highly personal. But there's a systemic quality to the experience of traveling this road. What affects one person, affects us all in some way. We only feel the systemic effect when we lift "the ego of the illusion" that blinds us—the ego of the illusion that manifests when we take life for granted too much.

In her last post dated July 31st, 2011, Mari chronicled the pain of her radiation treatment and talked about the extreme amount of weight she's lost, dropping 13 pounds in three weeks. On July 31st, she weighed 92 pounds, according to her post, which she titled "My Darkest Times." In it, she wrote

"It feels unimaginable that my body would be wasting away right before my very eyes. Then there is the infection that rages in my mouth. There are ulcers that cover my mouth and throat. This makes it very difficult for me to speak at times. Food does not taste like food. It is disgusting. It tastes mostly like sand in my mouth mixed with the infection. ...Sleep is a huge problem for me as well.  I can hardly sleep at all—mostly because I am so hungry I need to keep feeding myself and then the digestion makes it impossible to rest at all. I’ll literally just sit and work for hours on end. But I can’t manage to care about anything that I’m doing. I notice that I can’t manage to care about other people. On top of that, I’m confused. I started to have cognitive deficits. I noticed that I started feeling disconnected all the time and it scared me. I would cry [at] the drop of a hat because I couldn’t understand what was happening to me. I noticed that I stopped caring about psychology—something that I know is my passion—but I couldn’t connect with it; it was an indescribable feeling of just not being able to associate to anything at all. ...I would look at myself in the mirror and I couldn’t recognize the girl that was looking back at me. I hated looking at her—such a strong word and it’s the only one that fits. She’s ugly. She’s emaciated. She looks like she came out of a concentration camp. Her legs are just bones. She’s disgusting. She’s bruised because of the blood thinners. All I can see is her ugliness. I would put on makeup to go to radiation; I would try to smile at people but I knew that  was just being a total a fake. ...I was feeling so awful about having to go to radiation every day. They make me lay down on a machine with this huge face mask strapped down to a bed that burns me every single day. I feel it. I taste it. It’s been mentally excruciating. I’ve just felt like screaming—somebody save me. ...Then there was God. I didn’t know or remember that there was a God. I literally didn’t stop to think of God. Who thinks of God when you’re starving to death and burning? I couldn’t even manage to get myself out of a chair without extreme effort. All I could do was wonder who was going to save me?"

If I said I can imagine the pain Mari's going through, I'd be lying. I can't. I've never experienced that amount of physical pain and anguish. It's a hardship that's unique to her experience; not mine.

I can say, though, that I'm experiencing something that's not unique to any one person. I'm feeling an extreme amount of empathy, which is the glue that systemically links our lives together in the human experience.

Through empathy, we're reminded that "...in the hardest of moments, we can also live the fullest of lives"—a lesson Mari's story teaches us all.

My thoughts and prayers are with her.

NOTE: If you would like to read more about Mari's experience and leave some encouraging words of support for her, please visit her blog Grace, Joy, and Healing.

Read other posts by Aimee C. Juarez

Keep up with our community: Facebook | Twitter | Saybrook's Organizational Systems Program

 

Comments and Discussions

re: "...In the hardest of moments, we can also live the fullest

Aimee,

This is a powerful story. I am sorry for your loss and am grateful for your amazing insight.

In wonder,
Julie

re: "...In the hardest of moments, we can also live the fullest

Thanks, Julie.

Facebook Twitter LinkedIn YouTube Google Plus

share