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.”

Embrace the Journey, Not the Destination

The Journey is Your Future… Your Have Already Arrived

So often we have our eyes firmly affixed on the “prize.”  We spend hours, days even, imagining what it will look like, what it will feel like, what it will be like to achieve whatever goal is in our future.   The goal becomes the sole destination:  Welcome to “Pie in the Sky,” U.S.A! 

Yet, what truly happens when we focus all of our energy, thoughts and actions on reaching for this, many times elusive, destination?  We completely lose sight of the journey unfolding right in front of us; blossoming and growing with each step and action we take.  We get so focused on the product of all our hard work, that we can feel depressed by the end result. 

We try to manipulate our lives, our surroundings, people, time; anything that will hopefully contribute to a satisfactory outcome.  We can over analyze ever aspect: if only I had done x, y and z, it would have been better!   We can live in fear of what may happen; setting up contingency plans for all the “possible” outcomes: if A happens, then I’ll do B; but if C happens, I’ll do a combination of B and E; and if P happens, then…  We may feel shame over what happens; falling into the mental trap of the “should ofs,” the “could ofs” and the “wish I hads.”

But what if we decide to do differently?  To stop right now.  Try and focus solely on what is in front of you at this very moment.  So, you’re reading my blog.  Embrace it.  Don’t think about what you’re going to do next, how this blog will serve you in your future, how you would have written it differently, etc.  Just embrace each word and let them settle into your mind and spirit in whatever way they may.

Our one true purpose on this earth is to go with the flow of the process of living… fully: to be completely in the now.  This is what brings true peace.  For most of my life, I spent (and wasted) so much time thinking about the future.  I was always waiting for the other shoe drop, and when it did, I was determined to be prepared!  Then I couldn’t get hurt, right?  Then I would avoid fear and uncomfortable situations.  Then I would I have the power and be in control of my own destiny.  But no one knows their own destiny.  None of us have control over the outcome.

Our futures are already written in the stars!

And instead of feeling a sense over loss over this, look at this as the greatest gift of all.  The gift of freedom.  The gift of letting go.  Permission granted to just live your life and be.

And if this is the case, then why do we expend so much energy trying to manipulate the future?  For me, it started way back in childhood, when I thought my “little self” had the power to make my dad angry or to keep him calm.  So I tipped toed around and tried to constantly be on guard for whatever the future would bring.  And I kept on tip-toeing right into my adulthood.  I measured my actions and behaviors to the people around me, thinking I knew what their reactions were going to be.  I prepared myself for whatever next health challenge would come my way.  I had contingency plans for every “possible” scenario (emphasis on possible!).  I was armed for anything; I was a Girl Scout, after all!

But, all this created was an internal state of constant anxiety.  And when you’re anxious, there is no way to just be… in the moment or with yourself.   Then I was blessed with being shown a different way of living and I decided to do differently.  This has changed my life in more ways than I could have ever imagined!  I now feel truly at peace.  I don’t have to worry about the future, that’s already taken care of.  For me, I know the loving energy of the Universe is guiding me in the direction I am meant to go.  For, you, it may be trust in God’s hands.  Just as long as you believe in some power or force greater than your own.  It’s called “turning your will over.”  When we hold onto to our will, we make ourselves into God.  We think we can control the outcomes, the end product of our hard work.  That’s exhausting!

I read recently that you can think of the word “will” as “faith.”  And in that context, if you think of the phrase “Thy will be done,” it is now transformed into “They faith be done.”  Let go… have faith.  Your life will turn out exactly as it is meant to be.  Stop keeping your eyes on the prize, and instead realize you’ve already received the prize. The gift of life is right here, right now, unfolding before your very eyes.  Each step you take on your journey presents you with an opportunity to be fully present (hmm…sounds a lot like “gift,” doesn’t it?). 

Once you take your foot off the pedal and turn on the cruise control, you are still moving in a forward direction, heading to your life’s goals.  But you can now enjoy the scenery as you drive past it, be focused on the conversation that is occurring with your loved one right in that moment, feel the energy of the radio’s music pouring into your soul.  You are now completely embracing the JOURNEY.

You’re alive… believe in that.  Let go of the idea that the path will lead you to your goal.  The truth is that with each step we take, we arrive.  Repeat that to yourself every morning:

‘I’ve arrived.’

(Excerpt from The Witch of Portabello, by Paula Coehlo)

Feeling My Feelings: I Can Be Both Strong and Emotional

So, time for another round of back injections.   A true pain in the butt!!  Yet, I was taking it all in “typical day stride” until I told a new friend yesterday that I would not be able to get together today; explaining that I will be otherwise indisposed.  And her reaction surprised me.  I recently found out that she, too, has an autoimmune disease.  We don’t know each other well enough to share details but I assumed she was familiar with the constant juggle of symptoms, pain, treatment options, appointments, etc.  You know, the ol’ Chronic Condition Round-Up:  “Admission is steep, but the ride is never the same!”  And I am sure she has her own daily struggles, but her gut reaction to discovering I was going to have corticosteroid injections was filled with compassion, awe, and even a little fear.  She instantly responded with “Oh, bless you!  I am so sorry you have to go through this ordeal!”

Ordeal!?  And that’s when I realized, it is an ordeal.  I am so used to being poked and prodded, that I have become numb to it all.  And, truly, this has been a very effective coping mechanism.  I think if I let down all my defenses, I would become paralyzed.  Because when I pause to think about everything my conditions entail on a daily basis, it is extremely overwhelming. And when this friend so clearly reacted to this, I became uncomfortable.  She was shining a light on my dirty little secret: my life is hard.

Three weeks back, I was “poked” in one form or another 3 out of the 5 days.  It began with a PPD test (Tuberculosis), no big deal but a prick just the same.   This was just the warm-up though; on that Wednesday, I had double corticosteroid injections in both my sacro-iliac joints (tailbone) and my bursa (hip).  Then I rounded out the week with 20+ Botox injections in my forehead, temples, and neck (for cluster migraines); imagine being stung two dozen times in less than 10 minutes!  And again, when I relayed my weekly adventures to friends and family, it was like I was informing them of that week’s weather patterns.  “Oh a small storm front came through in the middle and end of the week, but for the most part, skies were clear and sunny!” My voice was even, the facts were relayed without feeling; I had lost all affect.

Perhaps I need to pause.  And hold my own space for a little bit.  To give myself a hug.  To let myself know that I am proud of the strong and resilient woman I am.  To cry for all I have to endure on a daily basis.  To mourn for the pieces of “normalcy” I have lost, and will never regain.  To celebrate the Survivor that I am.  To appreciate and honor the fact that I don’t let my illness consume the all of me.  To feel my feelings, whatever they are.  To just be.

I get uncomfortable when others are sympathetic to my plight.  I still struggle with vulnerability.  And in accepting that others don’t view me as a “sympathy case,” they just have empathy and respect for my daily struggles.  And even more so, for how I choose to handle these situations.  Those are the pieces within my control.  And it’s okay for me to have pride over my tenacity and courage in the face of some very difficult daily hurdles.

Each day of my life is like walking through a field of landmines.  They’re old landmines, some are deactivated while others are extremely unstable and reactive.  I never know which one is going to go off or when I am going to trigger a reaction.  Prime example? The Steep Price of Admission I paid for going to the movies with a girlfriend the other day.  But even since then, my body has been “a-buzz.”  It’s like a feeling of after-shocks that will suddenly shoot down my arm or explode up my spine; intermittent and completely unpredictable.

And then lying amongst this field of mines, are hurdles.  Those steep inclines I know I’m going to have to muster the strength to surmount.  Like today’s injections.  I know in the long run they will (hopefully) provide relief.  But in the short term, I have to accept increased pain and aggravation of my symptoms.  I also have to measure the risk of even trying these treatment options that provide sporadic results.  The sacro-iliac joint is the most difficult joint to inject.  It’s nestled deep amongst tissue (nerves, muscle, connective) and is a very small opening.  I’ve observed them searching for it on imaging, watching this enormous needle poking around inside me trying to find the sweet spot.  There is no guarantee that it will hit its mark.

And that’s where I just have to remember to bring it all back to today, to the present moment. Because if I (and many of you!) were to let my mind expand and wander into the days before and all the days to come of this illness and its trials and tribulations, I would curl into a ball like a potato bug and hide forever behind a hard shell.   This is not an acceptable answer for me either.

So, where does that leave me, today?  The conversation with my friend yesterday and my meditation on this today, has given me a clear direction.  It’s time to re-focus my energy on Balance.  Often, I equate this with the delicate balance of doing just enough activity (not too much, not too still) that will support my body’s health without sending it into a flare.  But, today, I need to practice Emotional Balance.  Giving myself the space and the permission to feel the emotional effect all of this has on me; to honor the wear and tear it takes on my mind and spirit.  But this “delicate balance” comes into play in feeling my feelings just enough and then letting them go, finding acceptance and peace in them, sharing them with a friend so I am not alone in my pain and fear.  Letting my feelings flow through me, but not get stuck within me. 

Where do you need to create balance in your life today?