To: Chronically Ill at Christmas Love: Peace

As the holiday week began in earnest last night (for both Christmas and Hannukah), I send extra love to my friends with chronic illness. As one friend recently reminded me, constantly fighting this sh*t is HARD!

Which made me think… at least 15% of society does not get any holiday time-off. Yet friends and family, and lets face it, ourselves, have pretty high expectations of our energy and ability to engage in all the same activities we used to do, pre-illness.

Living with chronic illness is a FULL TIME JOB. No holidays “off,” no vacation or calling in a “me-day” on accumulated sick days, no summer vacation, no breaks for our birthdays.

I certainly don’t mean to be morbid! I am just standing in solidarity with my chronically ill brothers and sisters. Because we still try to put on our Santa hats and reindeer bells and look festive on the outside while we feel awful inside. Our hearts want to receive each and every hug, but our bodies pray for not another pain-full squeeze.

For me, my body tenses up. Its almost like an unnecessary fight or flight reaction. So that I many times don’t feel the overwhelming fatigue and pain until I sit down at home post and my body desperately goes into spasm.

So please remember this holiday:

* We may need to be selective about how many events we go to in order to conserve and stretch out our energy reserves (our “spoons”).

* We may skip the more crowded events in exchange for more intimate gatherings. Large groups can by over-stimulating and overwhelming and very fatiguing.

* Our schedules may seem unconventional. This year for example, I did church on Christmas Eve with my family, and then we’re not exchanging presents until the 28th. My husband and I cap off the holiday week with celebrating Our Christmas on New Year’s Eve and Day. Its not like I can go out on the town to ring in the New Year anymore!

* The hardest limitation I’ve had to enforce, is cutting out friend activities: Friendsgiving, White Elephant and Secret Santa, Cookie Exchanges, … In exchange for being able to participate in family celebrations.

It has taken me many, many years to come to this balance. And I still struggle with missing out, and even worse, disappointing those I love.

Family and friends can be so incredibly understanding and supportive. As long as I explain the place I am coming from. And the very few that don’t, aren’t worth any of your energy.

Am I miffed at my illness. Hell, yeah! It’s a freakin’ 24/7 job. I can’t take my body off, like a scuba suit, and set it in the corner for even a 5 min. break!

Do I feel melancholy? You bet! I miss walking through cities and malls to look at the holiday displays with Christmas music floating all around me; joining the local town Christmas strolls and tree lightings.

BUT I REFUSE TO LET MY DISEASE TAKE ANY MORE OF MY LIFE! I love Christmas! So I’m not going to compare what I can or cannot do. I am going to appreaciate the beauty of every moment I AM well enough to experience. No matter how small. We have been given one special gift through illness, to recoginize hidden hope and miracles that others miss.

So to my over 15% of FaceBook friends (that I know of) with daily chronic illness, you are not alone! We celebrate  together!!

And to our friends and family, thank you for you understanding, your patience (especially when we’re running late or cancel last minute), for your gentle hugs, and comfiest chairs. We feel grateful for every moment we get to spend with you!

 

Finding My Own Integrity

Integrity has become the cornerstone of my life over the last several years. And not in the moralistic sense of always doing the right thing, “even when no one is watching.” But in a deeper, more personal way: To always do as I say and say as I do. And what I really mean by that catchphrase is:
To be whom I am. At all times. To be true to myself. To proudly present myself—warts and all. To celebrate the imperfectly perfect person I am!

I used to confuse integrity. I thought I walked that path but in truth I was practicing external integrity instead of internal integrity. I believed that my primary purpose “of serving needs greater than my own,” translated to taking on whatever you held as your integrity; helping you fight for it, preserve it, advocate for it. I would don the appropriate mask for that particular occasion or interaction, performing the part I thought was expected of me. I thought I was acting in integrity by being whoever you needed me to be; that forsaking a part of my own identity was just part of the bargain, a necessary sacrifice of sorts.

I strived to be the best me in your eyes and the eyes of society. I imagined what a person of integrity looked and acted like and I played that role to a tee… the perfect wife, daughter, friend, employee. Thankfully, I have now come to learn that a person of integrity is being the best possible person I Am. As Is.

It wasn’t until I entered a 12 step program almost 5 years ago that I was able to take an honest look at myself. Part of re-learning integrity was learning to let go… of all the ways I thought I “should be” or “had to be” in order to be considered “good.” It wasn’t until I took all the pieces of me—each and every facet that created my beautifully flawed whole—that I integrated the all of me.

Reflecting on the word “integrity,” my mind quickly traveled down the word chain… from integrity to integral to integrated. My curiosity led me to the dictionary where I discovered the cohesive evolution of these descriptors:
Beginning with Integrity: the state of being whole and undivided. Leading to Integral: lacking nothing essential. And finally landing on Integrated: to blend into a functioning whole. Essentially, to become “completely, soundly and entirely united.” PS- Also see: “Honesty”

How fitting is that? Because I now know that to have integrity is to be honest with one’s self. That when I approach any situation with a clear picture of my abilities and truest self, I walk with integrity. I heed my intuition; I act as no one other than who I am.

For me, one of the biggest lessons in integrity I’ve learned is committing to only what I am capable of. So that I truly “do what I say and say what I do.” This can be a challenge with my physical limitations; because I need to recognize the all of me—from my strengths to my shortcomings. And have faith that the all of me is enough exactly as I am.

I cannot commit to everything I want to. But, when I am honest about what I can and cannot do, when I remove all masks and stand proudly naked for the world to see, I am respected. By others, but most importantly, by myself.

And when I remove the self-imposed obstacles of all the ways I used to think I should act in order to be perceived as one with perfect integrity, I am free to flow through life as an unimpeded river of grace. I feel the strength of my own center. And I live from that place: from my own truth.

Martin Lurther King Jr. said, “On some questions, cowardice asks the question, ‘Is it safe?’ Expediency asks the question, ‘Is it polite?’ And vanity comes along and asks the question, ‘Is it popular?’ But conscience asks the question, ‘Is it right?’”

My conscience is the seat of my integrity, the guardian to my inner voice, that when heeded never steers me wrong. But I used to confuse the question, “Is it right?” I would use this assessment as a moral scale, which in my mind said, “do you think what I am doing is right?”

But, I now know, after much shedding of external layers, that I know what is right. I know my own integrity. The key is pausing to listen, truly listen, to what my intuition is saying or asking. To not question it out of fear or judgment of myself. But to open myself wholly to the person I am.

In 12 step programs, there is a daily 10th step inventory where you ask yourself, “What action did I do today that I want to keep?” (IE: where did I walk with integrity). And, “Are there any actions from today that I would do differently in the future?” (IE: in what ways did I not act in my highest good). The beautiful thing about this process, is the more you do it, the more the list of “do-overs” becomes fewer and farther between. Because you learn what it is like to walk with integrity every day. And there is so much joy surrounding this feeling of being honest with yourself–with being 100% pure you– that you no longer want to be or act any other way.

Being honest with yourself is like finally freeing your soul from the caged expectations of self-imposed “I’m supposed to be’s.”

As Parker Palmer said…
“I now know myself to be a person of weakness and strength, liability and giftedness, darkness and light. I now know that to be whole means to reject none of it but to embrace all of it.”

These Are My Graces…

Yesterday, was my father’s birthday. He passed 4 years ago and so with the day brings a deep sense of melancholy, and yet… all I feel is JOY at the myriad of ways his spirit shines through me every moment of every day.

Today, I am in more physical pain then I have been in years. Meds have been changed, symptoms flared, and yet… all I feel is GRATITUDE that I am able to be with my closest family today; the ones who do not expect me to be anything other than me.

A couple days ago a dearest friend called in deep distress over the sudden loss of her closest mate, her dog. And my mind reeled with the age old question, “Do we close ourselves off to love to protect against the pain of loss?” And yet… all I feel is BLESSED at the way every being in my life has shaped me; has made me a better person. I have lost a lot… and yet I have also lived a life full of love.

Today, I turn on the news and once again bear witness to the tragedies of war and famine, death and disease, throughout the world, and yet… all I see is STRENGTH in the faces of my brethren, and the little acts of KINDNESS that are woven through the stories of strife.

THESE ARE MY GRACES…

The way I live my life… the way I view the world.

Threaded through my heart, coloring all that I see.

Influencing the way I treat others, and in turn, the deep compassion in which I am treated.

It is seeing a world full of ABUNDANCE instead of loss.

Grace, no longer reserved for just the Christian community… it is there, right there. Every Where. For every one of us.

Ripe for the picking.

Grace is not a thing you can earn, or deserve, or create, or even lose.

You do not have to be “redeemed” by grace; we are all gifts of grace.

It is always there. It is in the sparkle of newly fallen snow, blanketing the world in a clean, new slate.

It is in a child’s smile as they crack open from ear to ear at the mere sight of you.

It is in the gentle pressure of two hands as they encircle you in love, in support, in comfort.

It is the feeling in your heart when you give of yourself, passing the grace, to another.

It surprises us. When we are at the end of our ropes, Grace appears with an extension piece to help us get our feet placed firmly on the ground again.

It astounds us. A reminder that “no matter how tragic or bleak things get, the bad simply can’t shut out all the good, the dark can’t squeeze out all the light.”

It is our safety net: woven from the hands of loved ones, the history of passed ones, the memories of times survived, the hope that there will always be a brighter day ahead, and the knowledge that this too shall pass, and that in this moment, grace shimmers below the surface of everything.

And although GRACE is an unexpected, yet utterly amazing, gift waiting to be opened anew each day, you can still be an active participant in grace….

Pull grace into your life. Tonight at dinner, invite everyone to share their best “Grace Story.” This a great way to express gratitude for the ways grace has graced your life; and to role-model this attitude for others, especially children.

Be a witness to Grace’s magic. We’ve all heard of Bird Watchers, now it’s time to become a “Grace Watcher!” Keep a grace journal, where you document the ways grace has worked or appeared in your life each day. Review it at the end of the week and be uplifted.

Be a Giver of Grace. Look around today. Who in your life needs to be reminded that grace is still working in their lives; who needs to be uplifted by a moment of grace? Is there a way you can pass the grace this Thanksgiving, without that person ever knowing where it came from? Challenge yourself to this. It will be surprisingly rewarding: doing a random act of grace just because.

Turn yourself over to grace. Choose a day during the upcoming holiday season where you put your calculated “To-Do List” down for a day. Let grace guide your day instead. Trust that what needs to get done, will.

And most importantly, be open to grace. Center yourself each day with a short mantra. Mine is, “May my mind, eyes and heart be open today to seeing and receiving the gifts of grace that cross my path.” The challenge comes in accepting the gift of grace in whatever form it comes. No “return to sender.” Remember if at first I doesn’t seem like the right fit, try again. Grace often appears in unexpected ways and at unexpected times, and yet it is always just what you need in the moment to get by.

“The winds of grace are always blowing,

but you have to raise the sail.”

{Ramakrishna}

Chasing The Elusive “WHY ME?”

Inevitably, at some point in time, after receiving the news that one is facing a long-term or chronic illness/disease, comes the elusive question of ,”WHY?!” For some, this may be a fleeting call to arms, for others, it becomes a constant refrain of, “Why?” or “Why me?” or even “Why, God, why?”

During my last hospital stay, the progressive pastor of my family’s church came to visit me. After the necessary check-ins were taken care of, he turned toward me, and simply asked, “Do you ever find yourself questioning ‘why?’.” I have wondered since what direction he was taking the conversation in, if he had any expectation of what my answer would be. But this has been fleeting, because in all truth, I think he was just curious.

In that instant, though, there was no hesitation; I didn’t even pause before responding: “Yes. I am sure I have asked, ‘why?’ at some point in this long journey. But I have quickly discovered that this is a fruitless pursuit; a question without an answer; a path that only leads me to remaining stuck in the miserable moment.”

But that conversation has left me with equal curiosity. What is the point in asking, “Why me?” in the face of any number of events (I’ve heard this turn of phrase applied to everything from an unexpected car repair bill to a diagnosis of cancer), when one could just as equally be asking, “Why not me?”

The relentless lamenting over the “why” produces an on-going cycle of strife and depression. How could it not? There are no (satisfactory) answers to this perennial question. But there are concrete, solution-oriented, answers to the question of “What next?” We don’t know the why, yet we do know the how. It’s what we do with the how in the now that defines us.

I know I am sick. I know that there is currently no cure for my autoimmune condition(s). I know that my disease will continue to progress, causing a ripple effect that may require future surgeries and invasive procedures. I know that the mountain of daily meds I take to treat my diseases and conditions also create an equal amount of unpleasant side-effects; and that it is difficult to separate the two apart.

But I also know that I am a fighter. I am creative in the face of challenges. I discover new pathways when faced with a seemingly impassable road block. I am a giver of light, love and energy. My mantra is “Hope.” I know that I do not have to face this life alone, unless I choose to isolate. Which I do not.

This is where I can put in action the “What next?!”

Each surgery may chip away at the person I used to be. But that’s the key, used to be. Not the person I am now. Life is not stagnant and neither am I. In the course of my conversation with the pastor, I shared my views on the River of Grace that flows through me, receiving energy from beyond, recharging my own Soul Beacon, before continuing to flow out into other souls around me.

He smiled and said, that sounds like what Jesus speaks of in the bible, “Our Well-Spring,” that source of God that flows through each and every one of us, just waiting to be tapped into.

I have heard many people refer to this well-spring in their own words. I have heard it be called: Universal Energy, Chi (Qi), Kundalini, Indomitable Spirit, God’s Grace, Life Force, Eternal Flame, and many other monikers.

For me, it is my River of Grace. Because a river is an ever-flowing body of water, that both draws from many sources (is not a singular entity) and pours itself into (nourishing) many other bodies of water. Rivers are not stagnant, they are an ever-changing and evolving path through life. And water is our life’s breath; we cannot survive without it and 2/3rds of our bodies are made of it.

My River is a well that never runs dry. Yet, it is my responsibility to drink from it, to pull from it to renew my spirit when it is lagging.

Which brings me to the Grace part. I think of grace as a gift. As the ability to look for the light in a sea of darkness. To see beauty and gratitude, no matter what the situation. To ask “what’s my next step” instead of getting stuck on the repetitive refrain of “why?!?”

And then I decide to look up the official definition: Grace: “unmerited divine assistance given humans for their regeneration” (Meriam-Webster). To merit something, is to earn it. You don’t need to do anything to earn, or to deserve, grace. It’s there for all of us. A gift from beyond ourselves, to regenerate the mind, body and spirit.

We have all experienced unexplained loss, devastating, mind-numbing losses. We have all had to endure unnecessary pain, physical, emotional and/or metal. Or had to witness, powerless, as a loved one is faced these. We have all encountered enumerable challenges, obstacles and sudden change.

These experiences are what define us. It is what has defined me.

But I have also chosen not to have them be the all of me. They are one part of my story. They are U-turns on the path of my life. And instead of sitting down in the middle of the road and stopping, staring befuddled behind, below, and around me. I’ve decided to look straight ahead. To tap into my River of Grace and chart a new course.

This attitude has carried me and allowed me to see my life as full of opportunities. To say, “What next.” Instead allowing myself to feel victimized, always the punchline, left lamenting the “why?”

Think of one area in your life where you can flip your knee-jerk response of “why?” on its head. Start small. See how this one shift in attitude affects your whole day. Your whole week. Your attitude and out-look on the things that come next.

And if you already embrace an attitude of “what next,” please share your experiences so that they may inspire and encourage others!

Calling All Angels

Just over three weeks ago, I had emergency surgery to remove a non-functioning gallbladder (another “perk” of Polychondritis, my main autoimmune disease. Yea!). My husband couldn’t help but announce repeatedly that this was now my 15th surgery in 7 years’ time(!).

The surgery went fairly well as did my initial recovery. After re-learning to walk post a 5 day epidural (I swear, I now know what Bambi feels like on those wobbly legs!), I was happily released.

After my 10 day hospital stay, I was only home for 3 days, when I suddenly developed a hot, sharp and stabbing pain in my abdomen. A same-day CT scan showed a very large small bowel obstruction and I was promptly sent to the ED, to await transfer to the inpatient unit.

This time, my stay was Hell.

It began with the placement of a nasal-gastric (NG) tube. I have always said this is the worst procedure I’ve ever undergone (and that’s saying a lot, considering all I’ve been through!). But this time was even worse. The main disease process of Polychondritis is the destruction of cartilage in my body, most prominently in my chest, ears, and nose. I already knew that the cartilage damage in my right nostril was so pronounced, it was effectively “closed for business.” And I clearly stated to the attending surgeon that only a pediatric sized tube would fit in my left nostril. Yet, she insisted in trying larger sizes first.

The doctor quickly learned that I knew my nose better than her, and had to use the smallest tube possible. Now, I don’t know a single person that feels “okay” about having an NG tube placed, so surgeons are used to complaints regarding this procedure. What they didn’t take into account was my personal history. The pain was beyond excruciating. The only way I can think of describing it is; it felt like someone had first taken a hammer to my nose, shattering the bones, and then commenced to insert (shove) a tube up my nostril, while asking me to drink water through a straw, drawing the tube down my throat and into my stomach.

This was the first time I felt “my light” go out. I felt like my Soul Beacon had been snuffed. I was drowning in pain and couldn’t tell the surface from the bottom.

My husband bore witness to this, and stated later that he saw the moment I let go. The moment my eyes went dull and blank. I would have done anything to make the pain stop. I was ready to trade my life for this relief.

Having these very deep visceral feelings scared the heck out of me. I started to question whether I had the strength to continue this battle being waged inside my body, with no foreseeable end. Slowly I began to fight again, to refuel my Soul Beacon from the exchange of light, love and energy with others. But I still felt dim; like my light could once again blow out with the slightest of breezes.

That breeze came a few days later when my body started to shut down. I had uncontrollable shakes, deep abdominal pain, unrelenting migraines, and spasms traveling from head to foot. I couldn’t focus on anything. There were none of my normal reprieves of drawing or writing, or reading, or even watching T.V. All I could do was lie there, writhing in agony.

I felt myself slipping away. It felt like I had one foot in this world and one in the realm beyond. One breathe from the universe, and I would blow away. Forever.

Without words, my family could tell. My husband and mother put up a barricade around me, keeping visitors away, while silently standing guard. They didn’t complain of hours spent entertaining themselves while I slipped in and out of consciousness.

And then one day, a dear friend of mine showed up unexpectedly for a visit. I whispered a request for Reiki. And while sending me healing energy, she also received messages in return:

She leaned close to me and told me that everything was going to turn out the way it was supposed to; that I could let go (and let God, so to speak). Then she passed on the most remarkable message: “As I have told you before, you are surrounded by angels, spirit guides and light beings that love and protect you. But this time, I felt something even deeper. There is one angel that has wrapped themselves around your entire body. They are protecting you and encasing you in love. They are only waiting for you to call on them for help and support. Use this angel. Ask for their guidance and protection.”

And with that, she left.

I was overwhelmed. If I let go, would that be letting go of this body, of this lifetime? Or would the act of letting go release the tension and stress I felt over having to “keep up the fight?” Could I truly trust in my angels and guides to take care of me, to lead me in whatever direction the Universe had planned for me?

I chose the latter, to trust in this intuitive message my friend passed on. It took me a bit to even find the strength to ask for help. But eventually I did. And that’s when the miracles started to happen.

The nurses discovered that my sugars had dropped so low, I was partially going into diabetic shock. And after several bags of sugar water being pumped into me, I started to recover. Another nurse ordered me an air bed that softy pillowed my inflamed joints. And the doctors finally reinstated my medication regimen that treats my autoimmune conditions (stopped out of fear of effecting the recovery rate post-surgery), most significantly providing infusions of steroids. My body started responding in kind.

But, even more remarkably: I embraced my angel back. I called on the energies that swirled around me for support and protection. And I began to feel like I was wrapped in a quilt of love. A quilt that hugs my body, wherever I go.

I don’t think it matters what your particular religious or non-religious beliefs are. Words like “angels,” “spirit guides,” and even “God,” don’t need to be defined. They can mean something entirely different for each person. For me, they all come down to energy. I don’t believe that when we die, all of ourselves just disappear. We are made up of many charged particles. So our physical bodies may fail us and be sent back to the Earth (to be recycled and revived), but our energy, or our “soul,” stays active. For some, they may find comfort in the idea of Heaven. For me, I truly don’t know. But I do know that I have felt the energy of loved ones passed surround me at many moments in my life. They have sustained me, they have pushed me, and they have caught me when I’ve stumbled. But, most of all, they have saved me. They brought me back from the brink of death 7 years ago, when my colon first ruptured. And they brought me back this time, when my mind and body was too fatigued to continue the fight on its own.

And that’s the key: even when we feel alone, we are not. We don’t have to face life’s challenges all by ourselves. Each one of us has an army of angels, light beings, and spirit guides just waiting to be called upon.

All it takes is a little prayer or meditation. Picture yourself surrounded with light and love. Feel the energy of the universe travel from without to within and out again. We are not stagnant beings, each one of us has a River of Grace flowing with our life force within us. Some believe this river is fed by God, others Buddha or Allah, or a Higher Power. For me, it is not an entity I can name. I choose to call my source God. But my God is not an omnipotent being, it is a mass of swirling light and energy that flows around all of us. Most often, my God wears skin, as a messenger of hope.

Each day I pray to have my eyes, ears, heart and soul open to receiving the gifts and messages from God and the Universe. This way I don’t miss the miracles when they come my way.

Because of this practice, I was able to see God in the form of my friend’s words as she asked me to trust in and use my Guardian Angel.

And even a skeptic cannot argue with the outcome. Because here I am just one week later, at home and recovering, with the energy to share my story with you.

Will I be able to weather another wave of physical assault on my already ailing body? I don’t know. But, that’s the key; I don’t have to know. All I have to do is trust in the universe to provide for me, whatever comes my way. My goal is to spread this message of hope and faith to others, so that collectively, we have the energy to face life’s challenges.

What challenges are you facing today that you could call on your angels or guides to help you navigate? All it takes is closing your eyes, taking a couple of deep cleansing breaths, and then, just… asking.
What have you got to lose by trying?!

Little “Seeds” of Hope

In the darkest of hours, a small beam of light will appear at the end of a long tunnel of pain, suffering, and sadness. Two choices lie before you: 1 – face this light, walk towards it, and let it grow into a beacon of hope and faith. Or 2 – turn your back on the light, shrouding yourself in darkness, the known place of suffering seeming safer than the unknown possibility of hope… of taking a leap of faith.

I experienced this very cross roads just last Saturday. I woke once again in deep, unrelenting pain, with a throbbing sadness in my heart for all that transpired over the previous 10 days.  I felt defeated. I felt lost. I wanted to move forward, but I didn’t know how. And, let’s face it, there was that part of me, as well, that wanted to stay stuck right where I was. I felt tired of “fighting,” of constantly pushing through the pain and misery. I witnessed others embracing this place and dwelling in it. And I actually saw benefits to this option.  The biggest of which would be that people would finally recognize, that just because I can see the beacon of light in the darkest of times, doesn’t mean that I don’t also experience pain, and disappointment, and suffering. They are not exclusive.

I had just settled into my comfy chair when the doorbell rang. Upon answering, I discovered an unexpected visitor on my porch.  A supportive friend and champion, she intuitively knew to take a moment out of her day to bring lightness into mine. She hadn’t intended to bother me, only wishing to leave a small package and note in my mailbox. But my mailman had foiled her plans, ringing the bell just before her arrival.

Exactly as it was meant to be.

Inside this “Delicate! Do not squish” package lay three, half-dollar size, oval seed pods. Transparent, with a little seed inside. Shake. Shake. My friend takes one and gently begins to coax this “seed” out. And lo and behold, it is not a seed after all!  It is this miraculous gift from the sea, the teeniest, tiniest conch shell I have ever laid eyes on (a mere 2-3 mm long!).

I gasp in surprise as my heart swells with wonder and awe.

She explains that upon discovering these years ago on the beach, she researched their origin, learning that conch shells are born by the thousands in connected translucent “cocoons” (often called a “Mermaid’s Necklace”). After a dozen years, they mature into the large conch shells we all covet finding on southern beaches.

Later, I researched them further and found that conch is also one of the Eight Auspicious Symbols of Buddhism and “represents the beautiful, deep, melodious, interpenetrating and pervasive sound of the Buddhadharma [“natural law”], which awakens disciples from the deep slumber of ignorance and urges them to accomplish their own welfare and the welfare of others.” (Wikipedia)

And that’s how I felt; as if I was awakening from a deep slumber of depression. And for the welfare of myself and others, I needed to face that beacon of light.

I was reminded of Helen Keller’s wise words: “Keep your face to the sun and you will never see the shadows.”

And the gift didn’t stop there; she nudged me to read her note …

“When I’ve been through tough times, I have trouble seeing anything besides my pain.  These [shells] can’t heal your suffering, of course, but I hope they remind you that the universe is full of joy and beauty and awe inspiring creations at the same time.  I hope you find moments where you can access that joy.  Please know that, even in your toughest times, you yourself are a source of joy, inspiration and an example of how beautiful God’s creations are to me and to countless others.”

I felt shaken awake. Flashes of beauty and moments of grace began to pass through my mind and heart. Just in the past week, during the period of my deepest pain, I was gifted access to that Universal Joy; I had not fully shut down. There was a crack in my soul just waiting to be re-opened. And, here was an unexpected angel, pushing her way through!

Her words brought welcomed tears and memories of past experiences where life and death, beauty and sadness coexisted in my life. I shared with her another time of deep sadness, when my mother in law collapsed suddenly from invading cancer and passed away 10 days later. My husband and I rushed back from Boston and never left her side. During this time, we would find ourselves sitting outside at the hospital staff picnic table, all hours of the day, situated right outside the birthing center. As my beloved second mother was lying 7 floors above in hospice, we were witnessing couples and families rushing in to bring new life into the world just below her.

And we couldn’t help but feel peace in the light of God’s grace, the universal cycle of life and energy.

There is no pleasure without pain.

There are two sides to every coin.

I made a choice on Saturday to walk towards the light.  This does not mean that my pain, or frustration, or anger, or sadness are gone.  It just means I no longer give them permission to consume my life.

I am actively seeking out moments of grace, of joy, of hope, and of healing. These are the foundation blocks to my continued survival.

I did not arrive at this conclusion alone. Because my “God” wears skin; meaning I see the God in you as I see the God in myself. And when that spirit knocks on my door, I am choosing to answer it.

I am choosing to let the light in.

It All Began With a Beacon of Hope

“I feel this little light inside me.”

“That is your Soul Beacon, my child.”

“A beacon?”

“Exactly.  You carry yours with great brightness.  It is how I found you.”

She sits with this thought for a while, twirling a blade of grass. Looking up shyly, she ventures, “I think I understand.  I can feel this glow inside of me, in the deepest pit of my spirit.  And when I think of this light, I can picture a lantern guiding my way through happy times and sad.  Is this like the light you call my Soul Beacon?”

“Why, yes.  Can you imagine why I think of it as something grand such as a beacon instead of a lantern?”

“Well… a lantern usually just lights one person’s path while a beacon can be a light to many.”  She pauses to gather her thoughts.  “And my Soul Beacon, as you say, sometimes feels grand enough to light the entire world, but then other times, it feels weakened.  As if it may even go out.  But, when I use this tiniest bit of energy to reach out to another being, I feel it start to grow again, bringing with it an unknown warmth of serenity.”

“YES.  So wise, yet so young.  Your body belies your true spiritual age.  I shouldn’t be surprised; the spirit is with each of us to see and feel when we are ready.”

His gnarled hand cups the young girl’s with tenderness. “That warmth and glow you feel is your true Life Source.”

“I feel it.  I truly do.”

“I can tell, dear one.  Your Soul Beacon may flicker, but it will never go out.  Many become fearful when they sense the depletion of their Beacon.  Without stopping to reflect on what’s happening, they begin to hoard what little light they have left.  Greed and fear rule their every move.”

“But, that’s no way to live!  How very lonely.”

“Don’t fret; that’s the glory of our Soul Beacons.  You can use your special gift to spread the light to others in need.”

“Gift?”

“Yes.  For without realizing it, you are touching every being you meet.  You are spreading your gift from heart to heart.”

“How do I know if it’s working?”

“The proof is in the result.  Think of someone you’ve met who seemed down and defeated; their energy depleted; their hope lost.”

Looking off at the arriving sunset, she sees the face of the farmer in the blazing riot of reds in the Western sky.  “Yes, I remember now.  I’ve met a farmer who had lost his wife; all he wished was to lie down in his fields and give his life back to the Earth.”

“And do you remember what happened during your visit with this farmer?”

The girl retells the story of her chance encounter with the lonely man.  “As we were talking, I slowly experienced a change in his entire demeanor.  His body began to unfurl from the protectively curled stance I first found him in.  He started to lean in to me instead of away.  Shadows of a smile graced his lips.  And he thanked me for spending some time with him and reminding him of all the reasons he needs to stay here and continuing living, no matter how hard.”

“And, you, how did you feel?”

“Well, I couldn’t understand why he was thanking me.  I hadn’t done much; I just talked with him for a while. I felt like thanking him.  At that moment, I felt beaten down by my journey; I was bone tired and couldn’t see any end in sight.  And then I met the farmer, and my journey had purpose again.  I left with a spring in my step.”

“Young one, when we take our light and shine it on others, they are bathed in our Energy.  Through caring gestures and pure human interaction each of us has the ability to recharge our depleting light sources; our Soul Beacons.”

“So, that’s all it takes?  Just showing some compassion to another being will re-build their energy, recharge their Soul Beacons?”

She pauses and ponders on this.  It still seems so simple.  And then, she sees.  “Ah, it seems like actions we should all be taking naturally.  But, in today’s world, everybody’s heads are down, looking at their own small space.  But, if we look forward, into the eyes of another, we not only validate their existence, we are validating our own!  And, it’s when we feel the most vulnerable and weak, that we have to reach out.  Otherwise, we all are just walking shells of what we are truly meant to be!”

“Now, it’s your job to spread this message from one person to the next as you continue on your journey of life.  The brighter your Soul Beacon becomes, the more people will be attracted to you.  Use this not to gain power over others, but to spread your energy out like a spider web, each tendril touching and igniting a Soul Beacon lying dormant within another.”

“Shine on, young one, shine on.”

Creative Medicine for Pain Relief

One of my Colorful Manadalas

I have discovered that some of the best medicine for pain relief is creativity!  There are so many benefits to engaging in Creative Therapy.  For me, the number one benefit is: distraction.  My mind becomes immersed in the activity at hand and before I know it I am no longer focused solely on my pain. It’s like the physical pain has transferred from my body to the page.  This technique is also extremely helpful in combating emotional and mental pain.  It can help one express the deep, painful feelings that can overwhelm without an outlet for release.  It can help one move towards healing.  Creative Therapy can help reduce stress, anxiety and tension.  I also find this approach deeply meditative; it can lead me into almost a trance state where my calm spirit is separated from my hurting body.  The pain becomes a distant entity.  It allows me to literally take a break from my pain. 

And the best thing is that you can do Creativity Therapy on your own or with a group, for no or little money, and at any time in almost any place (don’t know if I’d try it in the elevator, but you never know!).  If you are more comfortable learning techniques from someone else, there are certified Art Therapists and many cities offer Creative Wellness Centers with classes and open sessions.   Another option is to find a group of like-minded people on Meetup.com or to look into classes available at local churches, community centers or adult-ed classes at local high schools.

But, I want to take a time to explore all the options for doing Creative Therapy in your home.  Don’t get stuck up by saying, “but, I’m not an artist!”  This isn’t about creating “sellable art,” this is about free expression through creative outlets.  There is something for everyone and no one ever has to see your creation if you don’t want them to!  Here are some ideas to get you started…

• Coloring Books!!… I find these extremely soothing.  My favorite are Mandala coloring books from Dover (found for <$5 on Amazon, etc.).  Mandalas have been used for centuries as meditation tools.  After mine are colored, I keep them to stare into when I am feeling stressed or in pain (sample above).
  

  “Sacred Place”
  Collage

• Collaging… rip up pictures in old magazines and glue them onto a larger sheet of craft paper.  I love to collage “vision boards” ofthings I hope to achieve in my future, of things that make me happy (sunsets, babies, waterfalls) or of placesI’d like to visit.  You can make “word boards,” random collages, or collages that form a larger picture (like my “Sacred Place” ex.)
• Knitting or crocheting… there are even weaving circles (at craft stores) for beginners that create a finished scarf!
• Cross-Stitch or Latch Hook… with so many ready-made designs to choose from.
• 

  My Tasty Gluten Free Fruit Tart

  Cooking or Baking… yes, this is a creative activity, too!  Make something just for the heck of it.  I find this option very Zen; I spend thoughtful, purposeful time creating a visually appealing dish only to have it devoured soon after. Talk about a lesson on impermanence!

• Gardening… create a pretty combo pot for your deck, porch or sunny window.
• “Scratch-Off Books”… you can find these at the craft store; there are images hidden beneath black that you scratch away with the provided tool to uncover scenes beneath.
• Zen-Tangles!… an awesome, new take on doodling.  Look for books online or in the library to get you started. Once you pick up a few different patterns, all you need is a sharpie and a notepad to create interesting, engaging, repetitive pieces anywhere.

• 

  Zentagles Samples

  

  Combo Pot from our Deck

  

  Fimo Clay Panda

  
  
• Card Making… make cards with any of the techniques above and then spend a little time writing a personal note to a friend, loved one, or even yourself!
• Photography… a great way to get you out in nature and become mindful about your surroundings.
• Simple Beading… string a pattern of beads on elastic or “memory wire” to create a meditation mala/bracelet (say a mantra for each bead as you “travel” around your wrist).
• FiMo… PlayDough for adults!  Roll and shape into abstract or formed designs and then bake them.
• Decoupage… buy a cheapy cardboard trinket box at the craft store and use ModPodge to paste on collage pictures. Coat with an extra layer of ModPodge to seal.
• Origami… I love trying to reach my life long goal of a “1000 Cranes for Peace”

• 

  My Buddha Decoupage Box

  

  My Crane Chain

  

  Sample Bracelet of Mine

  
  

PHEW!!!! Now pick just one and indulge your creative self today!  Then let me know how it felt and if you have any other ideas to share!

Here’s another blogger’s take on Creativity and Emotional Expression : http://myfibrotasticlife.wordpress.com/2013/09/10/the-importance-of-outlets-to-express-emotions/

Withdrawal is Necessary

A startled fawn
Captured at dawn
Grazing upon our city lawn

In the quiet,

        The messages come

Like shy woodland creatures

        Just waiting to emerge from

                The shadows of their withdrawal

 

Insight and courage

        Dance wind on the mind

Hidden hopes and dreams

        Of the deeper kind

                Find safety in your open arms

 

Together you celebrate

        On the lush, vibrant banks

It’s the River of Grace

        That you should truly thank

                For delivering these gifts of God

 

But without the space

        And quiet… and solitude

You would not have heard

        These shifts in moods

                That herald in your own creativity

 

Nurture the fox

That rest and hides

In the deep, hidden

Crevices of your mind

Just waiting to emerge

To coalesce and converge

        From the shadows of your withdrawal

• Quiet is necessary… withdrawal is necessary
• It is so easy to fill our day with distractions.  Anything to keep us from dwelling on our physical pain, mental pain, to-do lists, “if-only lists,” thoughts of disappointment or loss, and all the other uncomfortable places our mind and body will go.  Right?
• I am discovering there is a difference between “being alone” and spending time “alone with ourselves”… in silence.
• I am often “alone” but I will have some external distraction, whether it is music, the T.V., a book… anything to keep my mind “busy!”
• I have now started to incorporate the practice of silent periods in to my day.
• It doesn’t have to be a long period of time. 5-10 minutes a day is plenty.
• Think of this as a gift to yourself.
• Quiet time to listen.  To hear what your heart’s desires are. To sit with feelings of grief of loss.  To feel your feelings, whatever they are. To follow your intuitive voice or the voice of God.
• This time of withdrawal can be a period of contemplation, meditation, prayer.
• Creativity comes when we gives ourselves pause to hear inspiration.
• This silent time may feel uncomfortable at first.   That’s okay.  It takes time for a our minds to settle into this space.
• It helps me to focus on something: my breathing (4 counts in, 4 counts out), on tightening and relaxing each muscle in my body until I am at peace, or on a one word mantra:
• This morning I used the word “center.” At some point my mind changed it to “believe. center, believe. center” on my in breath and out breath. A serenity came over me and I felt completely relaxed. I also intuitively knew I was right where I am supposed to be at this moment in time. I “believed” without question. I was quiet long enough for my soul to come to its own conclusion.
• So I challenge you to turn off all external noise, to quiet yourself and let your mind float wherever it may.  Then come back here and let me know what you discovered!

(“Shadows of Withdrawal” poem written by me, Tamara P.)

 

I Am One Big Ball of Raw Nerves

Mihail -Miho- Korubin ; Oil, 2012 ~ “It Is Over”

I am a bundle of nerves; raw and jangly, the all of me is on edge.  I just went to my pain doc to try and get some relief from this “nervy flare” and had to not only explain it all to a medical resident who spoke broken English, I then, one hour later, had to repeat the same info to my doctor!  It’s hard enough to communicate what is currently going on with my regular physician, let alone trying to explain it to someone who speaks a different language with me!  Can you hear my frustration yet?

But, truly, I am exasperated with my on inept body; at this flare that was triggered almost two weeks ago and won’t let up. (see: Paying a Steep Price for Admission) I feel like every nerve in my body is frayed and hyper sensitive! And I mean sensitive!!  How to describe this pain?  This electrical, bug-crawly, burning, tingling, spasmy, hot, numb combo?   It’s the Nervous Wreck Cocktail, that’s for sure!  It’s like my body has decided to revolt against everything!  Touch=Bee Stings; Breathing=Fire; Walking=Hot Coals; Just Being=Buzzing Electrical Wires.  And the strangest symptom of all?  My histamine system jumps on board and starts reacting like I am being attacked by a horde of allergens; I start sneezing uncontrollably, eyes water, face puffs up.  I know, sounding crazier by the minute!

And if I can’t clearly explain it to myself, how do I expect others to understand?  I guess I just hope.  I hope that the doctor won’t look at me with that slightly confused visage, wrinkled brow, sad, concerned eyes, downturned lips… I can almost see the wheels in his head screeching to a halt, not sure what direction to turn next.  He’s very empathetic, that’s a positive.  He kindly puts his hand on my knee and apologizes for my pain.  He tells me how strong I am in the face of so many difficult situations, but that he can tell how much this current scenario is negatively impacting my life.  OH, really?  Were the tears a clue?!

And apologizing for my pain?  Shouldn’t he be apologizing for not being able to figure out how to treat my pain?  I know he feels bad… I do too!  But, the pain is there, so what are we going to do about it?!  Can’t do any of the typical treatment modalities, because I’m either already on the highest dose of a medication or have tried it and stopped for some reason or another.  He finally comes up with a “new one:” Nortryptyline at bedtime.  “If we can at least get your sleep better, than hopefully the pain will follow suit.”  Like I haven’t heard that one before!

And I hate this.  Because it’s so not like me to rant!  I don’t know if it’s the freedom and acceptance of this blogging world that has opened up this damn of pain or what.  It’s these damn nerves!  They set everything afire!  Uh!

None of this is really helping the pain to go away.  But, to know I am no longer holding this space alone (see: A Cosmic Connection) helps to diffuse it, even just a tiny bit.  Thank you for holding this pain with me.

I do believe that this is the greatest gift of this forum:  A sharing of energies, a collective soul.  We are all going through our own struggles, yet by bringing them out into the open, we are no longer carrying the burden alone.  And, selfishly, I think I hope deep down that someone out there will read my post and understand: truly “get it.”  And then I won’t feel so alone anymore!

And that’s what I forgot for a moment.  I’ve been afraid to let people all the way in right now.  To let them see how severely I am hurting.  I’ve been afraid of sounding “crazy” (I mean, come on, who says they feel like bugs are crawling under their skin?!).  I’ve been afraid of getting more of the “sympathetic, she’s sounding a little wacky, but I love her anyway” looks.

I don’t need your sympathy.  I need you to say, “Wow. I can’t imagine what you’re going through, but that must be really hard;” and to hold the space of pain, confusion and fear with me.

I don’t need you to try and suddenly change our relationship in order to make me better, to “fix me.”

Because I don’t know how long this flare will last.  And I have to remind myself; I don’t need to figure that out.  I just need to get through today.  I just need to remind myself that this will pass; and, that, until it does, it’s okay to reach out to others and say (scream?), “I’m hurting!”  And to admit that I can’t engage in activities right now, but that doesn’t mean I won’t always be able to.

Just for today… I need your love.

Just for today… I don’t need you to understand exactly what I’m going through, I just need you to accept me.  To accept the all of me.

Just for today… I need to feel like I’m not crazy.

Just for today… I need to cry.

Just for today… I need to count the minutes, because I don’t know if I can make it through the next hour.

Just for today… I need you to know I don’t mean to be short with you, I’m just on edge.

Just for today… I need you to know I may feel fine one moment and horrible the next.  I’m not trying to be inconsistent; my disease is inconsistent.

Just for today… I need even more of your love (and maybe some extra hugs, too!).