The Power of Connection

"We don't accomplish anything in this world alone... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads form one to another that creates something." Sandra Day O'Connor.

 

Recently, I received an email from Grace Goldstein, the Chief Operating Officer of the Carcinoid Cancer Foundation, letting me know that CCF had featured my blog on their Facebook page. I was honored and touched by her faith in my words.

...from CCF's Facebook Page

Sometimes I forget that I have a rare disease. And sometimes, I think I'm cured. And then I get test results and realize - nope... I'm still a medical mystery.  CCF is an amazing place where carcinoid patients can connect and educate themselves about this rare cancer.

I would like to share a recent message I got from a fellow zebra, Christina, because sometimes I forget that I write for more than just myself. I get lazy and down because I think - who's really listening anyway...right?  I mean... I'm just writing words so they can aimlessly float around in a starless cyberspace... so who cares if I go for a Red Mango Fro-Yo instead of blogging? (Red Mango is delicious by the way, but I digress.)

But Christina and Grace, and all my fellow carcinoid friends, help remind me that one of the purposes of my blog is to connect --which not only might help others facing the same baffling carcinoid questions that I do, but also help ME continue on with this quest, which sometimes seems like a never-ending riddle that gets even more complex with each lab print out and doctor's furrowed brow. 

Below is part of an inspiring email I received from a fellow zebra Christina (visit her site at Caring Bridge)

Hi Beautiful Marlena! 

My name is Christina and I am a huge fan of yours.. not only have you lifted my spirits, helped me to feel less alone (less alone regarding the whole Carcinoid nightmare), your whimsical and soulful writing has also opened my heart and helped me heal.. thank you dear one.

I was finally diagnosed with Carcinoid Syndrome January this year (having been misdiagnosed for over 5 years ) By February I was in Carcinoid Crisis and by Feb 21 my surgeries ( liver 70% taken out. Over a foot of small intestines taken out and several organs removed for good measure). Since then I have been in ridiculous pain 24 / 7. Have had bile leak, followed by a mean bout of painful gut retching pancreatitis, stints put in and several other issues that have come up since.
 

Needless to say I feel lost, tired and scared…..
 

To say it has been a Hell ride would be an understatement.. it has been – by far – the worst experience of my life.. yet there have been some miracles along the way .. Back to YOU. Thank you for your brave willingness to share your thoughts, efforts, feelings, hopes, … your LIFE! You are such an inspirational Lady and this makes reading your posts that much more interesting and uplifting!

...

So, dear lady, I wish you and your loved ones AND CCF all the love and healing in the world. Hopefully our paths will cross. And may you have great health and many years of adventure and bliss and love!

Warmly and with Aloha
Christina

New Ink

“A tattoo is a true poetic creation, and is always more than meets the eye. As a tattoo is grounded on living skin, so its essence emotes a poignancy unique to the mortal human condition.” - V. Vale

"everything was beautiful and nothing hurt"- my first tattoo

Unfortunately, my inkwell went dry for a while - despite a deep reserve of new stories and major life changes.

I have been feeling guilty about my silence. I can almost envision a disappointed Kurt Vonnegut, shaking his head as he rhetorically asks, "Who is more to be pitied, a writer bound and gagged by policemen or one living in perfect freedom who has nothing more to say?" My response to K.V. is - both.

I began thinking: How will I ever start blogging again? Where will I begin? I even pulled out my laptop a couple of times, but there just seemed too much to say... the white computer screen unblinkingly stared back at me, mocking my indecision.

But as Bukowski once said, even "writing about a writer's block is better than not writing at all." So I decided to start writing again, which meant haphazardly picking a moment from the past few months to reflect upon... I finally settled on November 17, 2012 - the day my close friend took me to his seriously cool tattoo artist at the "Tattoo Garage" in Bloomfield, NJ.

For the past 10 years, I have wanted to tattoo my favorite quote from Slaughterhouse Five across my back. The quote reads, "everything was beautiful and nothing hurt." Perhaps it's because my young life was wracked with such pain that I've been repeatedly drawn to these words; however, something always seemed to get in the way of putting ink to skin. I think I now understand why - sometimes, even if we know what we want in life, we aren't yet ready for it.

Everything about the day of my tattoo felt right. I loved the fact that my friend's artist was in Bloomfield - the town where I was starting my life over again, after a long battle against Carcinoid cancer; and after ending a 5-year relationship with a good man - who just wasn't the right man.  I finally felt like I had reached a point in my life where I was ready to take a shot at happy possibilities instead of merely falling back on survival instincts.

Shortly after getting my tattoo, wonderfully positive things began to happen.  I met an adoring man who actually understands who I am at my core, and has made me feel more loved than I ever thought possible. I've begun to finally put on weight again, and have managed to go from a size 00 (I didn't even know they made a "double zero") to a size 2. I started seeing a new oncologist, who is running the right tests and helping me stay on top of the cancer. And finally, I am continuing to develop friendships with deep roots and supportive care.

Truly now, my tattoo isn't merely a black and white quote ripped from the pages of my favorite book - but rather a living testiment to the idea that beauty is attainable if one can force themselves to push past the pain.

Lenten Beauty

On Ash Wednesday I was looking for something to give up. Chocolate was out of the question - I'm a Catholic, not a martyr. So I began thinking of an alternative.

Lately, I've been struggling with vanity. Now that my cancer worries have declined, I find myself increasingly concerned about the "worry lines"on my face... I don't like the pigment changes in my skin caused by the flushing, I hate the way my clothes hang; you name something about my physical appearance and I'll tell you what's wrong with it.

Vanity: otherwise known as "pride" under the seven deadly sins, or "hubris" in ancient Greek tragedies; irrespective of what you call it - being overly caught up in your own appearance is one ugly vice. 

Then it came to me - what about giving up wearing make-up for 40 days? Wouldn't that help with this vanity thing? Wouldn't that make me be a better role model for the teenage girls I teach every day? It's not like I even wear a lot of make up to begin with - but what I do wear is corrective, so facing the world without it was such a jarring thought that it screamed Lenten sacrifice to me.

Then, I told my mom my idea. I thought she'd be all for it, but she simply responded, "Life is hard enough, why pile on more sacrifice? Why not pledge to meet the challenges you already have in your life in a more positive way, rather than creating new challenges for you to overcome?"

And my mom, a polio survivor, knows a lot about challenges and sacrifice. Her words made sense, and became even more clear as I spent the day with her at Reins Therapeutic Riding Stables - where she keeps and rides her horse Andy.

Giving Andy a Post-Ride Treat

Reins specializes in therapeutic riding for children and adults with all different types of physical and mental disabilities - and several of the stable volunteers are disabled themselves. I've been involved with the disabled community my entire life, so being at Reins is completely comfortable for me. 

Mom and Andy

Watching my mom on her horse - pretty much riding without the use of her legs - reminded me what true beauty is... it's about being comfortable in your own skin, and doing what makes you happy - irrespective of what others might think. My mother has never let her disability paralyze her in life; she's always followed her dreams. 

Whether I wear make up or not, is besides the point - it's what I chose to focus on... and for the next 40 days I'm going to do my best to celebrate the unique beauty that is mine.

Churches of Santa Fe

Diana and I are both Italian Catholics, so of course we wanted to visit the several historic churches in Santa Fe.

The Cathedral Basilica of St Francis of Assisi

The first Cathedral was built in 1610 by the Franciscan Friars and Spanish colonists, but was destroyed in the Pueblo revolt in 1680. The current Cathedral was rebuilt in 1886.




Interestingly, the French archbishops had all of the traditional New Mexican Mission Style art removed from the Cathedral, but in 1997 the present Archbishop commissioned Santa Fe local folk artist Marie Romero Cash to redo the artwork lining the walls in the Santero style reminiscent of the historic churches.

The Loretto Chapel

Diana and I stayed at the beautiful Inn and Spa of Loretto, in the heart of Santa Fe. It's a first class hotel, and I had one of the best therapeutic massages of my life at their spa (which was rated #25 out of the top 50 spas in the country by Conde Nest). Another really neat thing about the Loretto Inn is that our room overlooked the chapel.

The Loretto Chapel is home to the "miracle staircase" which Diana and I payed $2 to see. At first, I couldn't understand what was so miraculous about it since the stairs looked like, well... stairs.


So we did a little research. Basically, the story goes that nuns built this chapel, but miscalculated the proportions and had no way to get from the ground floor to the 20 foot choir loft. The nuns prayed to St. Joseph (saint of carpenters), and a carpenter showed up in the middle of the night on a donkey, and built the staircase using only a square, tub of water, and a saw. The stairway makes two complete 360 degree turns, has no central support, and no nails. In short, mathematically it shouldn't stay up. Additionally, the wood is not indigenous to the area - no one has any idea where it came from.

After he finished, the carpenter left in the middle of the night, without asking for payment; miracle or not - that was one great guy.

The San Miguel Mission

The San Miguel Mission is the oldest active church in the United States, and it was our third and final stop on our "church tour." While it was the most architectually simple, there was something amazing about it - which made me linger a little longer than normal after we lit candles for our loved ones at the altar.




After all of this religious and historical reverence, we made our way through The Mission's gift shop, and broke out into huge grins when we came across this little gem:

Diana and I are English teachers after all, and we catch spelling errors for a living - so there is something wonderfully entertaining about finding these rare linguistic renegades out in public, especially when you least expect it.

A Para-Equestrian's Passion

My beautiful mom showing off her Mother's Day present: a pictorial history of Jackie-O's lifelong passion for horses

My mom contracted polio in 1955; ironically the same year the vaccine came out - she was 5 years old. She spent 10 months in the hospital, and the polio left her with severe weakness in both legs. The doctors all said she'd never walk again, but she proved them wrong by walking, by herself with the aid of leg braces, up to the altar to receive her first Holy Communion. Afterward, she got a gift that would change her life: a ride on a white pony.

My mother in 1956 with my grandfather - taking her first ride on a horse while still wearing her leg braces, Holy Communion dress and veil

This began my mom's love affair with horses... but it wouldn't be until she was in her 50s that she would start competing competitively as a para-equestrian rider. Over the past few years, she has gotten so good that her competition level required her to get her own horse. After much searching, she finally found Andy - a beautiful white Arabian. I can't wait to meet him this summer.

Mom and her horse Andy at
REINS Therapeutic Riding Stables

My mother's grace and talent continue to inspire all who meet her, especially those in the equestrian community. Thanks mom for reminding me every day that there is no value in being a victim - only in living bravely.

I'd Rather Teach Peace

Colman McCarthy's book I'd Rather Teach Peace is a required read for anyone who doubts the power of passionate teachers. In fact, it should be on the reading list of every news anchor who diabolically delights in demonizing teachers based on outdated stereotypes.

Before I became a teacher, I made six figures as an attorney at one of the biggest and most prestigious law firms in the country. I was good at my job, and I didn't leave because of the great allure of summers off or getting out at 3pm (which never happens)* .... I left the firm for the same reason every good high school teacher joins this thankless profession - because I felt an overwhelming need to pursue a career where I could make a difference, a real difference, in the lives of teens.

*News Flash for all you doubting-Thomases out there: I work MORE hours as a teacher than I did as a third-year associate at the law firm, only I don't get a fancy car, or an expense account, or trial bonuses. Instead, I get something much better - my kids; there is no better place than with my students, celebrating their successes.

Now, amidst this recent "teacher-bashing" public dialogue, I find comfort of purpose in McCarthy's words:

"At fifteen, sixteen, and seventeen, the ages of everyone in the class, teenagers are shopping around for ideals to live by. This week I was reading a bit of Mother Teresa, whose Sisters of Charity have three convents in Washington and whom I interviewed when she opened the last one in the south-east part of the city. I ask a student to read aloud a few of nun's lines [from "Anyway"] that might help everyone, me included...to be the idealists we are meant to be."

Anyway

People are unreasonable, illogical, and self-centered.
Love them anyway.

If you do good, people may accuse you of selfish motives.
Do good anyway.

If you are successful, you may win false friends and true enemies.
Succeed anyway.

The good you do today may be forgotten tomorrow.
Do good anyway.

Honesty and openness may make you vulnerable.
Be honest and open anyway.

What you spend years building may be destroyed overnight.
Build anyway.

People who really want help may attack you if you help them.
Help them anyway.

You see, in the final analysis, it is between you and God.
It was never between you and them anyway.

Baptisms and Birthdays

Recently, Gary and I had the honor of attending my good friend's daughter's baptism. One of the things that I most appreciate about being Catholic is the ability to symbolically celebrate life's important milestones: baptism, confirmation, marriage, anointing of the sick - all of these sacraments remind us that we are not alone; our faith and community are there to help us on life's sometimes bumpy journey. It's a nice feeling - not having to brave the big bad world all by yourself.

We have plenty of these moments outside of the religious context: birthdays, graduations, proms - events that mark not only the passage of time, but also new chapters in our own unique story. Shortly after the baptism, we attended Gary's grandmother's surprise 90th birthday. What an incredible few days - seeing the grand spectrum of life's beauty in these two precious souls.

Sophia Rae's Baptism

Sara Mae's 90th Birthday

A Mother's Wisdom

"If you can find a path with no obstacles, it probably doesn't lead anywhere."

My mother, a polio survivor and 2011 Equestrian Paralympic hopeful, pictured here with her former - much beloved - equine partner Pan Pan

Shifting Focus

"The real voyage of discovery consists not in seeing new landscapes but in having new eyes." Marcel Proust

"Everything depends on our way of looking." Thich Nhat Hanh

The diagnosis of a potentially fatal disease makes us acutely aware of the impermanence of our existence, and forces us to reevaluate our contribution to the human story. Put plainly - we wonder how we will be remembered if we die. This mortal uncertainty breeds chaos, and from this chaos - all art is born, especially great works of literature.

I am teaching Siddhartha by Hesse in my senior World Literature Honors class. It's a bildungsroman (coming of age story) about a young man in ancient India who sets off on a path of self-discovery amongst Buddhist teachings. It was written in the 1950s by a Swiss author who was the son of Protestant missionaries, which evidences the fact that "truth" isn't confined to one religion or experience - it is a quest that sometimes requires us to visit unexplored lands and ideas in order to make sense of our own world and our place in it.

These distant landscapes that help illuminate our own individual truths can be literal or metaphorical, and certainly the "land of cancer" counts as a foreign place filled with epic battles that no one is particularly prepared to fight.

After my own cancer diagnosis, I dusted off my pocket survival manual for times of spiritual doubt: Living Buddha, Living Christ by Buddhist monk Thich Nhat Hanh, who draws from both religious traditions to make an eloquent and insightful argument for peace. Both Jesus and Buddha stressed mindfulness - being aware that people everywhere suffer, and that our role in this world is not to avoid that suffering but rather to be part of its solution.

Part of the solution to our own suffering lies in our focus. "What is important is our insight into the nature of reality and our way of responding to reality...When you look at the blue sky and are aware of it, the sky becomes real, and you become real" (Thich Nhat Hanh). This sounds pretty mystical, but it's not. Basically he is saying that if we go around worrying and carrying anger with us, then that is the reality of the world; but if we stop and see the beauty in our lives, then our reality changes into something much more meaningful.

It's hard to close the door on negativity and self-doubt, but I'm going to try at least to wake up every morning and make an effort to turn the knob.

A Moment of Zen

The secret of health for both mind and body is not to mourn for the past, not to worry about the future, nor to anticipate troubles, but to live the present moment wisely and earnestly - Buddha


- Posted using BlogPress from my iPhone

A Soldier's Prayer

Growing up, "The Prayer of An Unknown Confederate Soldier" was taped to our refrigerator door. When I went to college, my mother gently pushed aside the few scattered magnets that had settled along its borders, peeled back the yellowing tape, and gave me the prayer. Eighteen years later, that faded, worn piece of paper (that fell victim to more than just the occasional wayward kitchen splatter) remains one of the most valuable things that I own.

The prayer transcends politics and religion to reveal a fundamental truth about the human condition: quality of character is not determined by the types of challenges one faces, but rather by how one faces any type of challenge.

My mother, Adria DiMaria, contracted the polio virus when she was five years old, which left her with significant weakness in both legs. After being hospitalized for a year, her primary treating physician said that he would "tear up his medical license" if she ever walked again; my mother not only walks, but is currently training to become a member of the US Para-equestrian Team and compete in the specialty of Para Dressage at the Paralympics in England (2012). [Click HERE to read her incredible inspirational story.]

With the words of this prayer in my heart and my mother at my side, my cancer diagnosis and treatment has never been a burden; it has always been an opportunity to become more "richly blessed".

The Prayer of An Unknown Confederate Soldier

I asked God for strength, that I might achieve.
I was made weak, that I might learn humbly to obey.

I asked for health, that I might do greater things.
I was given infirmity, that I might do better things.

I asked for riches, that I might be happy.
I was given poverty, that I might be wise.

I asked for power that I might have the praise of men.
I was given weakness, that I might feel the need of God.

I asked for all things, that I might enjoy life.
I was give life, that I might enjoy all things.

I got nothing that I asked for—but got everything I had hoped for.
Almost despite myself, my unspoken prayers were answered.
I am, among all people, most richly blessed.

Anointing of the Sick

On Monday morning, June 21st, Father Larry will bless me with the Sacrament of Anointing of the Sick at morning mass (7:15 am EST). Please keep myself, my doctors, my family, and my friends in your prayers during this sacred time of healing.

Para. 1526: "Is any among you sick? Let him call for the presbyters of the Church, and let them pray over him, anointing him with oil in the name of the Lord; and the prayer of faith will save the sick man, and the Lord will raise him up; and if he has committed sins, he will be forgiven" (Jas 5:14-15).

About the Sacrament of Anointing of the Sick (from American Catholic website)

Although the sacrament began as a ritual of healing, over time the emphasis shifted to the forgiveness of sins on the deathbed, when such forgiveness would be the final preparation for heaven. The Second Vatican Council returned the original meaning to the sacrament by emphasizing that it is not only for those who are at the point of death, but for anyone who is seriously ill, including mental or spiritual illness. It also helped move the Anointing away from a private service and back toward a community-based one.

Today we are all aware that tensions, fear and anxiety about the future affect not only our mind but our body as well. These illnesses can be serious. They can move us to ask for the healing touch of Christ in the Sacrament of Anointing. Persons with the disease of alcoholism or persons suffering from other addictions can be anointed. So can those who suffer from various mental disorders. The anxiety before exploratory surgery to determine if cancer is present is a situation in which Christ's power can be invoked in the sacrament.

In these cases the person does not have to wait until the illness is so grave that he or she is in the hospital or institutionalized to celebrate the sacrament. Sacraments, after all, are community celebrations. It is preferable to celebrate them in the context of family and parish even before going to the hospital. The sick person has a better opportunity to appreciate the prayers and symbols of the rite when in her or his customary worshiping community.