Wonders of Life

An April 2003 Journal Entry

I had one of those rare but stunning moments the other day where I just felt flooded by the utter profundity of this world – at the miracle of actually being alive and part of this infinite web we have yet to fully understand.

Every day I lie in my bed in virtual stillness, yet I am also simultaneously spinning with billions of others on a beautiful, blue-green orb within an endless, incomprehensibly massive universe. And, even more miraculous, I am blessed with the human ability to be fully aware of that fact, and to ponder and be in awe at the meaning of it all.

Sometimes, I look out my window at the beauty of the mountains and trees and all the cacti. Or at the birds fighting for food on the feeder we have provided them. Or the bunny rabbits who visit me from time to time, scurrying about or just sitting there in some kind of quiet reflection I don't fully understand. And I think about how all these things are all distinct forms of being-ness. All these things are alive in various forms of consciousness that each differ from mine. And yet, in so many ways, we are the same. We are all alive and experiencing the world through our endlessly unique roles and abilities, and we all have the same basic, inherent needs and desires -- to be nourished, to thrive, and to simply be as we were created to be.

Other times I just lay with my eyes closed in meditation and try to feel this life inside me, as well as this sickness that has taken so much from me. I let myself go to the middle of it and feel the agony of it to the core. And I wonder at the fact that my internal body actually knows what’s wrong with me, yet “I,” my mind, does not. My body somehow knows what has gone astray, and it is desperately trying to fix it for me or to compensate for it in some way. It is failing, of course, but it is indeed trying. How does it know where to begin, or what to even attempt to do? How does it know and function beyond what I myself can comprehend? Every cell of my body seems to carry its own intelligence, independent of what I define as “me.” How extraordinary is that?

In my questioning, I start to marvel at how incredible the human body is. Do healthy people really consider the miracle of their wellness, when so many things could go wrong and yet rarely ever do? Do they understand it, glorify in it, breathe it in every second of every day? Do they dance with joy at their good fortune? Do they know the tremendous gift that they have been blessed with, and do they appreciate it? I mean, REALLY appreciate it, with all their being?

Sometimes I am just overwhelmed with how amazing life is. How every inch of this universe and every breath we all take is filled with endless miracles and wonder. If only we took note of it all more often. If only I had soaked more of it up when I still had the freedom to dance.

What I Miss Most

Note: This is a personal journal entry from a couple years ago. I was a bit hesitant to post it here, as it was written in what was a moment of grief for me.  I  pretty much bare my soul. But I wanted to share it with all of you anyway because it shows the degree of loss that can come with this illness, as well as all the hopes and dreams that fervently remain. As I continue to try to dig out of a lengthy crash, many of these emotions have again been stirred, and I wanted to express them.
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I want my life back. All of it. Every little morsel.

These are just some of the many, many things that I miss most.

I miss the feel of soft, freshly cut grass as you lie in a field on a warm summer's night, gazing up in wonder at all the stars shining like diamonds in the sky.

I miss salty ocean breezes caressing your bare skin as the sun warms every inch of your body, down to your core. I miss the refreshing, cool feeling of ocean water washing over you in a playful dance as it moves in rhythm to the pull of the moon. I miss looking at the vastness of the sea and sky, and sitting in wonderment at how beautiful it all is.

I miss picking up the phone to call and hear the sound of a life-long friend's voice.  I used to love that first familiar "hello," detecting a sweet mix of love and loyalty and happiness at hearing from me,  knowing we share a history together which includes our innermost secrets and flaws, and that we love each other just the same.

I miss the glorious feeling of a daily shower and the soft, massaging flow of water gliding over your skin. I miss the wonderful feeling of being clean and fresh from head to toe, of having bouncy hair every day, and smelling of scented soap.

I miss hearing my own voice and the liberty of being able to speak what is on my mind and in my heart. I miss being able to tell people in my own voice that I care about and love them. I miss the joy of lively conversation and sharing ideas out loud. I miss the exhilaration of a full, deep and jubilant belly laugh --  the kind that makes you catch your breath as tears of joy stream down your face.

I miss going for long scenic drives, with or without a planned destination. I miss the freedom, joy and sense of adventure that travel brings, the discovery of new territory or culture, and the sense of awe at seeing beautiful landscapes and scenic views. I miss meeting new people and the joy of new experiences.

I miss getting to see my fiance's sweet smile each day and the amazing sense of comfort I get in being wrapped in his arms.

I miss sleep -- beautiful, uninterrupted, deep and refreshing sleep. I miss waking up feeling rested and renewed, healthy and vital. I miss waking each morning knowing, without even having to think it, that my body is ready and capable to take on any adventure or challenge of the day with perfect ease and good health.

I miss the joy of learning to cook and the satisfaction of creating a well-prepared meal.

I miss cleaning! I actually miss dusting, vacuuming, scrubbing, doing the laundry and cleaning out clutter. I would LOVE to get down on my hands and knees and scrub a house from top to bottom until it sparkled. I love the feeling of a freshly cleaned home, especially in spring.

I miss having had the chance to create a long, successful and satisfying career doing something I love. I miss the feeling of achievement that comes with a job well done. I miss being able to put my ambition to work and experiencing the rewarding feeling of a difficult goal or task coming to fruition. I miss being able to wake up each morning happy to go to work, and coming home each night knowing I gave it my all and exceeded expectations in doing so.

I miss going to movies and the fun of getting absorbed into a great story on screen, whether it be one that makes you laugh, cry or think and reflect. I miss the smell and joy of eating popcorn at the theater or even in front of the TV.

I miss reading -- books, newspapers, magazines, and letters. I am ever grateful for audio-books, but there is nothing like reading a good book, cover to cover, on your own.

I miss exercising. I miss going to the gym, doing sit-ups, lifting weights and going for long (or even short), satisfying walks. I miss the joy of a good workout and the feeling that it helped to benefit my body instead of worsening it. I miss being toned and fit, and looking at my body in the mirror with some sense of satisfaction or pride. I miss having the chance to take the karate and dance lessons I've so wanted to take since I was a young girl. I miss a body that responds as it should to physical and cognitive exertion.

I miss the pure exuberance of good health, of being able to move and engage in life with ease and freedom, and without repercussion. I miss the feeling of wellness, of not being sick, of not being in constant physical distress. I miss being able to do whatever I please, even the simplest of things, without penalty. I miss having a body that matches the energy and vitality of my soul.

I miss having endless possibilities for each day. I want to wake up again one morning knowing that I can do ANYTHING I want that day and that the world awaits me.

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I also yearn for what I have not yet had.

I want to know what it’s like to spend endless hours in conversation with my fiance, getting to know him even more deeply every day and falling more and more in love with each other. I want to have many candlelit dinners and romantic evenings together, and go on fun adventures doing the things we love to do. I want to experience the simple and mundane tasks that couples share together every single day.

I want to know what it’s like to walk down the aisle on my wedding day, knowing the man of my dreams awaits me at the alter. I want to know what it's like to vow to love, honor and cherish him every day until death do us part and hear him make those same vows to me in return.
 
I want to know what it's like to have life growing inside of me; to feel the rhythm of a tiny but steady heartbeat in my belly that is not my own. I want to know what it is like to see life flow through me, to hear my baby's first breath and to marvel at the miracle of his/her arrival.

I want to know what it's like to hear a child's repeated cries of "Mommy! Mommy!" knowing it's you for whom s/he yearns.

I want to be able to change dirty diaper after dirty diaper, to soothe a child's tears, to be filled with awe at the miracle of their existence. I want to watch them smile and giggle and grow as they make each milestone, and boast to everyone with pride.

I want to go to my future children's dance rehearsals, soccer games, school plays and piano recitals. I want to do crafts and bake cookies with them, play sports with them, help them with their homework and school projects, and teach them about values and morals. I want to go on vacations together as a family and watch their joy as they experience new adventures for the first time. I want to be there for them in all their good times and bad; to be fully involved and deeply interested in everything they have to do and say. I want them to know without a shadow of a doubt that I love them unconditionally.

I want to be able to play and get to know my niece and nephew. I want to be able to hug and kiss and talk to them so much that they get sick of me. I want to take them on adventures they will never forget and help them make memories they will cherish for a lifetime. I want to be a good godmother to my godchildren, to be their buddy and friend and someone they admire and look up to.

I want a successful career doing what I love. I want to get my master's degree and make a difference in the world doing something that brings me joy. I want to do volunteer work, knowing I am helping those in need, and helping them make dreams come true.

I want the chance for a full, engaging, adventurous life as I express all the vitality, energy, joy and spirit of my soul.

I want the chance to fully be me.

On Being Treated with Humanity

Note: This is an old journal entry I wrote years ago. While it initially starts out by describing some of my experiences with the homeless, it is ultimately about treating people with dignity and humanity, with (I hope) a clear tie-in to ME/CFS at the end.

My sophomore (and first) year at Tufts University, I decided to join the college weekly newspaper as a photographer.  During my first day on the job, I was told they were doing a story about the homeless in Boston. They wanted me to go downtown and take some photos of any homeless people I happened to come across. Fabulous, I thought. That sounds like loads of fun. While the assignment was not what I'd anticipated, I hesitantly accepted the challenge.

I took the T to Harvard Square, hoping I’d find someone in the subway or thereabouts curled up in a corner and covered in a blanket, and I could snap a quick photo without notice and be on my way. But there were no homeless to be found in the subway that day.

I climbed the stairs leading to the Square and walked around the shops until I found a man standing on a street corner with a duffle bag, holding a sign that read “Will work for food." I tried to casually snap a quick shot of him, but I realized I couldn't get a close enough photo without him seeing me. I was afraid this might anger him. So (realizing this might not be the best idea either), I decided to simply approach him and ask his permission to take his picture.

I explained to him that I worked for a local college newspaper, and that I would like his okay to take a photograph of him for an article we were doing on the homeless. "Well, that depends,” he immediately responded, "What does the article say about us?" I admitted that I did not know; I had not seen the article and wasn't even sure it had been written yet.

He then went on to tell me a bit of his personal story. I don’t recall all the details now, except that he was an educated man and had once been a professor, and that he’d merely fallen upon hard times. He went on to say that people often think the homeless all have similar stories that led them to where they are; that is, that they're all drunks, or mental cases, or drug addicts, or uneducated and lazy bums who couldn’t make do in the world. But that's not the case. While that stereotype may fit some, even many, every homeless person has their own story just like everyone else. One photo of one homeless man, he told me, could not possibly represent the homeless as a whole.

I admit I was surprised by his words, and by how articulate he was. I am not sure what I’d expected him to say, but I know I had not expected to engage in an intellectual conversation. Perhaps, I realized in that moment, I had been guilty of making such stereotypical judgments about the homeless myself.

In the end, he agreed to let me take the photo, but only if I made sure the article did not paint the homeless in a negative light. I wish I had spoken to him longer, had thanked him for his words of insights, and had not agreed to a promise I couldn’t keep. I don't think I realized at the time, though, how much his words had impacted me.

I thought of that man often after that, and never looked at the homeless in quite the same way again. Many years later, after moving to Arizona, I had another similar experience which also left a lasting impression. I was sitting on a park bench one day, reading a book on medical intuition in an attempt to solve my own struggles at the time (this was after I got sick, but obviously before being bedridden). I looked up from my book for a moment, absorbing a thought, when I saw a very young (and admittedly very scary looking) homeless man approaching me. He was probably just in his early 20s, and I vaguely recall he had piercings and tattoos all over him. I looked back down at my book, in part not wanting to stare, but mostly because he made me a little nervous and I didn't want to draw his attention.

I heard him stop in front of me and ask for change.  I looked up at him and smiled, apologizing that I did not have any money on me. Despite the news that I had no cash to give him, his eyes and face brightened at my reply, and he seemed surprised by my friendliness. He asked me what I was reading. Too embarrassed to say it was a book on medical intuition, where people claimed to be able to tell you all that ails you with one simple glance, I quickly responded "Oh, nothing interesting,"

“Well then, why are you reading it?" he asked, and this made me laugh.

He stayed and continued to chat with me, even briefly joining me on the bench.  I don't remember what we talked about in that short amount of time, but I do remember he asked me if I lived nearby, and if  he could use my bathroom to perhaps take a shower and wash up.  I emphatically turned him down.  He asked me if it was because he was a "bum."


“No,” I said to him, “it’s because you’re a stranger. I’m not in the habit of letting strangers into my home so that they can have a shower.”  He laughed at this and told me that was fair enough.

In the end, when he got up to leave, he looked at me and thanked me for talking to him. I gave him a somewhat absent-minded but friendly “Sure!” and suddenly he looked very serious. "No, really,” he said, “thank you for treating me like a human being."

This caused me to tear up a bit. I was deeply saddened to think this man had been so continuously judged and mistreated that he actually felt the need to thank me for responding to him with basic kindness, and recognizing his humanity.   My heart broke for him.

Despite the difficult circumstances I now also find myself in, I am grateful I live in a beautiful home with plenty of food and water and shelter from the rain. I have a wonderful companion (now my fiance) with whom, though long-distant, I feel the greatest of support, love, friendship and encouragement. I also have family and very dear, lifelong friends who care for and love me. But I now understand, at least on some level, what it feels like to be regularly misjudged, and to be seen only for where you are, versus for who you are. People who don't know me are quick to make assumptions, and people who do know me seem to sometimes forget that I am still that same energetic, ambitious, adventurous person inside, with the same dreams and desires.

I would even say that, at times, I actually do feel homeless in a way because I am trapped in a body that no longer feels like a true home to me.  It does not match the spirit and energy of my soul.

Several years ago, I had the unfortunate experience of seeing a doctor who, upon hearing I had ME/CFS, immediately responded "I don't do CFS. I don't believe in it, I don't treat it, and I certainly don't do disability forms for it." She then wrote down "major depression" on my chart -- without asking me one single question about my symptoms, my medical history or my beliefs. When I told her I wasn't depressed, she simply replied "I don't believe you." This happened in the first five minutes of entering the room before she even examined me, all merely from my stating I had CFS. It was the first time in my life I had been made to feel less than human, like I was a piece of trash. Much like, I suspect, the homeless feel on a regular basis.

Wherever we are in life, whether it is in a good place or bad, we are not defined by our circumstance. Life can change in an instant, even when you're doing all the right things, and all that you once had, all the things you once thought defined you, can suddenly be gone. And when you find yourself faced with such incredible obstacles, all you can do is give your best and try to face each day with courage, optimism, hope and some grace. But no matter who you are or where you are, each and every one of us has the undeniable right to be treated with kindness, respect, dignity, and above all, humanity.