Stop Body Shaming!

“Oh, No! This is the section for Fat People.”
Yesterday, at a large department store sale, I was perusing the racks in Juniors Plus when a mother and daughter entered the area. At first, I hear Mom say, “Check the sale rack first; you’ll be able to get more items that way.” Smart. But, then directly on the heels of this advice, I hear a comment, spoken loudly and dripping with disdain, “Oh, not here! This isn’t your area. These are for Fat People.” Ending with a barely concealed “Ewwwww…”

Equally embarrassed and curious, I risked a glance over my shoulder to see the source. I discover that, yes, the teen in question is slender and fit. But, the mother is not. In fact, she looks like she shops for size 16, the same as me. As found in most plus-size sections.

As much as I felt like hiding my face behind a rack for fear of being seen shopping in the “Fat People’s section,” I found myself even more concerned with those shopping around me. Because I happened to be browsing in the juniors section, filled with impressionable teens. The store was packed with large groups of young women shopping for semi-formal dresses (Homecoming, perhaps?) and they were all shapes and sizes.

Luckily, it seemed I was the only one close enough to be hit with this verbal vomit. And, honestly, my gut reaction was to say something to this woman. But no matter the pithy comment I thought of, all of them seemed as if they would only exacerbate the situation; and give weight to her words. But now I wonder. Should I have said something? So that if, by chance, any young mind had heard, they would know that not all people agree with this statement nor think that it is right.

But, I admit, in that moment I fell victim to Body Shaming. I felt uncomfortable in my own skin. Worse, I didn’t feel like I had the “right” to say anything to that woman because “technically” I am a “fat person.” It seemed like it would be better coming from someone with a slimmer silhouette.

In less than 30 seconds, I felt less than.

But, perhaps, I could have calmly said, “I understand this section isn’t right for your daughter. But it is right for lots of young woman and your words were hurtful and inappropriate.” What do you think?

I started to observe the groups shopping. I noticed that groups of peers were generally supportive of each other. Each group contained a wide range of body types but instead of comparing or belittling, they lifted one another up. They suggested flattering outfits, complimented each other, and when in the changing room, if something didn’t fit or look right, they giggled about it instead of making disparaging remarks.

Conversely, I witnessed a different type of reaction between mothers and daughters. Moms were quick to point out things that wouldn’t look good when their daughter excitedly held up an item. Most often with a “Really?!” and a raised eyebrow. One word that can speak (negative) volumes. And the parents who had slim children seemed to flaunt them; many of these parents being less-than-fit themselves. As if their child’s attractiveness was a direct (positive) reflection on themselves.

Yes, I know it was clothes shopping, which directly lends itself to “body talk.” But why can’t it be positive, supportive body talk?

Soon after this, I found myself in the dressing room. As I faced the daunting task of trying on a pile of clothes, knowing that if I found 1 thing that fit well, it would be a success, I was presented with two options. One, to let that woman’s voice seep in and take up court with my mental judges, or, two, to dismiss her as an ill-informed person.

I chose the second, and this is what happened:

• I actually felt some compassion for her. How? You may wonder. I realized she must feel so uncomfortable in her own skin, she needs to belittle others and take on her daughter’s identity in order to feel better. What a painful way to walk around.
• I looked myself straight in the mirror and reminded Me that we each have our own story. My weight is from years of physical conditions, surgeries and side-effect laden meds. I used to “pre-emptively” want to explain that to people (strangers, that is!). Even going so far as hoping they would think I was pregnant instead of “abdominally challenged.” Now, I remind myself we are all walking around with our own stories, no matter the exterior appearance. Being overweight comes from a variety of sources, whether it is physical or emotional.
• I also looked myself square in the eye and made myself stand tall and proud. I committed to trying on clothes with a critical eye; not one of a critic putting myself down but critically, assessing which things compliment me and which aren’t suited to my body type. Period.
• And a funny thing happened… I ended up finding too many items that fit me well! Wherein I needed to pick and choose and leave half in the store for another time. That rarely happens!
• I also walked through the store proudly. I didn’t let one person’s shaming shrink me. Depending on the brand, I can wear anywhere from a Lrg to a 2x. That’s a wide range! It also means I shop almost every section of the store. I committed to acting the same way no matter the area; to not feel like a fraud when I’m in the “regular sections” and to not slouch and hide in Women’s or Plus. I am who I am. And I belong here too.
• Finally, I started to positively pay it forward. I complimented women of all ages and sizes on their outfits or accessories I found flattering. I encouraged someone checking out an item to try it on: “Wow. I think that will look great on you!”

As a society, we need to stop “Body Shaming!” That includes making negative, derogatory comments about people or celebrities wearing (what we think is) an unflattering outfit.  We need to refrain from making comments about what others choose to eat. We need to cease the “non-verbal commentary” of a pointed look, raised eyebrow, smirk, or the good ol’ eye-roll. Or even the sound effect comments: “Hmmm…,” “Eww,” “Ugh,” *sigh*, etc. We all know what I am talking about.

Body shaming isn’t right. Worse, it isn’t supportive. As women, we should constantly be lifting each other up not tearing away at each other so we feel better about our own selves. And this includes people who you do not know… It is ALL wrong.

All that mother needed to say was, “Oh, hon, this section doesn’t have your size. Let’s check over there.” Instead, within her original comment, she not only put down anyone shopping in that section, she also put down herself, and her daughter. Because I was once a slender and fit girl, too. I no longer fit that body type. No one knows where our lives will lead. And we all deserve the unconditional support of our mothers, sisters, and Sisterhood at large.

How can you support a fellow woman today and Stop Body Shaming?

The God I Have Vs. The God I Want

I was recently challenged to write about “the god you do believe in and the god you would like to believe in.”* I read this as the god I have versus the god I want. Upon reflection, I quickly realized they are now one and the same.

I did used to think of god as a punishing god… or more often, an absentee god. I couldn’t see the ways god was working in my life, so I denied any existence of a god, or a higher power. Truthfully, this “me of the past” probably would have skipped even reading a post with “god” in the title. I was that closed off to the existence of something greater than myself.

If there was a god, where was he/she when I was sick and dying?
When I was abused and attacked?
When addiction consumed the lives of my family and myself; the monster, Alcoholism, marching its deadly force straight to my beloved Dad’s doorstep?
Where was god when physical and mental pain and anguish played ping-pong with me and Dave?
Where, where, where?! I lamented.

Thankfully, I finally surrendered myself to the idea of a greater existence, to a god, in whatever form. For me, it started with daily prayer, most often filled with thoughts of gratitude.

My god today…
…travels in the minds and bodies and hearts of those around me; sending messages and offering Hope through their words and actions. My god wears skin.

My god is energy… energy that flows freely in and around me; energy that is never stagnant. And when I tap into this never-ending supply of energy, creative flow happens. Joy happens. Hope and inspiration happens. Love happens.

My god is always leaving presents in my path. I just have to stay open to receiving them, to recognizing them when they appear so that I can embrace them, fully.

My god is abundance. There is always enough spirit and energy to go around.

My god is a River of Grace that flows through each and every one of us.

My god is neither good nor evil. My god neither rewards nor punishes. My god needs no definition. My god is unique to each and every one of us. My god just is.

My god lives deep within the earth, growing roots to ground me… to bring me home. All the while connecting these roots to others and creating a collective conscious of love and community.

My god is my intuitive voice. The one that sees the path clearly and always know “the” choice for me–never waffling. When I turn a deaf ear to this voice or question its motives, I turn my back on god and my one true purpose in this life.

And, my god lives in the Now. It’s when my mind wanders off the present path and tries to predict the future or live in the wreckage of my past that I lose sight of god.
But when I keep my feet firmly planted in the soil of the now, not questioning the why, only focusing on the what, that I am always moving in a Good Orderly Direction.

Inspiration flows freely.
Opportunities open up like butterflies from their cocoons.
I never have to be alone or feel isolated again, because I feel god everywhere and in every one. And I too shine from within with the light of god.

My god reminds me that “I have arrived.”

* Exercise came from Julia Cameron’s, The Artsist’s Way (p.106)

Going Just Beyond…

A friend shared an alternative approach to creating New Year’s Resolutions. For the last three years, she has chosen a word that defines what direction she wants to head in the upcoming year.  Instead of listing “specifics” she meditates and visualizes her hopes, wishes and dreams and then categorizes them under an umbrella term; used as her motivational mantra throughout the year. For this year she was vacillating between love and courage, thinking about using both. Then through conversations with others, she realized the recurring word that kept popping up was “connection.” And as she said, “I have found that the word I settle on, most often finds me, not the other way around.”

By focusing on this one small, yet enticingly expansive word, she will walk through the coming 365 days deepening her connections with herself and with others, while staying in tune with the connectivity we can all experience, when we dip into the well of our shared roots.

Just a few days after this conversation, I happened upon an article in our local paper, “My Life, My Words; Three Little Words Have an Impact.”*  In it, Kristine Bruneau writes, “Since 2012, I’ve chosen three words to inspire and guide me along the path of achieving my goals.  At the end of the year, I reflect on how well these words have helped shape my efforts.” Her three words for the coming year are “restore, integrate and teach.” For the year just past, they were “amplify, connect and share.”  They are a trio of interconnected words, which seem to act as stepping stones to growth.  The first, a verb, “takes action”; the second exemplifies how she will integrate the first tenet into her own life; and the third, how she will spread this to the world beyond herself.

Whether one word or several, both approaches are positive and action oriented.  When focused on the solution rather than the problem, you automatically walk in a positive, forward moving direction.

By setting a word, or words of intent, you are practicing the Law of Attraction. 

For the last couple days, I have opened up my mind to receiving a word that describes what I want to attract in the coming year.  I meditated and prayed, and allowed the first word that came into my mind to sit and stew for a while.  It was an unexpected word.  Some may even say an odd word choice.  But the more I let my mind tinker with this idea, the more I realized it encompassed all my hopes, goals and dreams.

My word for 2014? — “BEYOND”

I want to reach just beyond my comfort zone into the unknown realm where growth occurs.  I want to re-discover my hidden talents; I want to experience life as it is, and then take it just one step further.  I want to reach beyond myself to help others and the world.

Thinking beyond is going to help me “feel my fear, and do it anyway.”  When I am about to embark on a new or different endeavor, and my fear (of failure, of the unknown, etc.) tries to stop me, I am going to pause, breathe and reach just beyond that fear into the landscape of trust. I am going to take my life just one step further.

I am going to remember this one-word phrase (hmm… oxymoron?!) whenever I am faced with a daily decision, choice or activity; I am going to pause and ask myself, “what would going just beyond look like?” 

The same goes for facing disappointment. Instead of focusing on “why life didn’t turn out the way I had imagined,” I am going to look for the hidden land of opportunity that lies just beyond the field of disappointment.

This word will help define the direction in which I want to head; but I am not concerned with defining what that will look like, what that will feel like, or how I will exactly get there.  That part I’m leaving up to God and the Universe.

And I can’t wait to see what happens!

Some questions you may want to ask yourself when choosing your own Word (or words) Of The Year:

• In what area of my life do I want to grow?
• What do I want to learn more about myself?
• How do I want to more deeply connect with my community? Family? Friends?
• What am I afraid of?
• What have I wanted to try that I haven’t yet?
• Where do I see myself in one year’s time? (in my personal relationships, in my financial stability, in my career, in my state of wellness?)

Then take a deep breath, close your eyes, relax your body, and exhale. What is the first word that comes to mind? Hold onto it, follow it, see where it takes you… and then come back here every once in a while to share your experiences with this annual exercise!

SOURCE: * Rochester Democrat and Chronicle, ROCarts, Section 2C

Indecisiveness is the Killer of Inspiration

Indecisiveness is the killer of inspiration. At times, I can be so clear with my intent that I do not question the “why?”  And at others still, I will find myself waffling and waffling to the point where I am no longer clear about anything: what I like or want to do or how I am going to do it.  I have forgotten the skills I have nurtured.

When I am debating between two paths in front of me, I concentrate on my center and listen to the intuitive voice within. Some call this the “voice of God” while others feel more comfortable defining it as the “voice of their soul.”  Either way, it does not steer me wrong.  I have consciously practiced decisiveness over the last couple years and have found great success and satisfaction in this approach.

What does “this voice” sound like, you may be wondering?  For me, and many others I have contemplated this topic with, it is always the first answer I hear.  My soul, through the grace of God and the Universe, knows the right step to take.  It’s my over rationalizing, over-thinking, fearful mind that muddles the thought.  Upon practice, you will discover that there is always a clear voice that speaks from within.  But you have to be open to hearing it, and then, even more importantly, open to receiving it.

Fast forward to today, and I find myself falling back on old, unproductive habits.  I hear that voice and quickly think right over it… to the point where the original intention is lost and I am left a confused mess.  For example, I am contemplating taking another art course.  I just completed my first “formal” art course since freshman year in college (!) and want to capitalize on the confidence and skills it gave me, by continuing to move forward.  I was strongly encouraged to continue my pursuit and that I could take a number of intermediate/advanced classes that would provide me with the tools to refine my style.

Not knowing what the best next class would be, I brought in a sample portfolio of my works to get the advice of the instructor. But if I want to be completely honest with myself, I did not want the “responsibility” of choosing the next class; for fear that it would not be an accurate fit.  Where does this fear come from? A lot of it is financial.  These classes cost upwards of $265! I would be eligible for a scholarship; but only my first class would be a fully covered, after that, it would be partial scholarships.  And, as us chronically ill know all too well, time and energy are precious commodities! I don’t want to “waste” them on the wrong course.  Argh! The pressure!!

There are many typical fear based reactions that can keep us from trusting our one, true intuitive voice.  I think we can all identify with financial insecurity throwing a monkey wrench into our confident, decisive selves.  We can fear making the “wrong” choice and either not enjoying what we chose, or, even worse, “missing out” on the other, better option.  We can be stifled by fear of failure or of trying something new and outside of our comfort zones.  Often, we are afraid of change; even if the present situation is not ideal (and even harmful to our mind, bodies or spirit), it is the comfortable.  And we like comfortable, the known.  We can be paralyzed by thoughts of what others will think of our choice, or by comparing ourselves.   We can be afraid of failure.  We can be afraid of wasting time, money, energy. . .

And then I hear my friend’s voice saying… “YOU MUST FEEL THE FEAR AND DO IT ANYWAY.”

Many of us have “trust issues,” and asking ourselves to trust our inner voice can feel like a huge gamble.  I know from experience that it does feel uncomfortable at first; because it is not the way we have typically done things in the past.  But whenever a decision is made based on faith rather than fear, you are always going in the direction intended. 

It does not mean that every choice you make from a place of faith and trust turns out like a pot of gold at the end of the rainbow!  There are times where I have listened to my intuitive voice and have faced challenges, pain, loss, and hurt because of the choice I made. But, in the end, I have always discovered there was a greater reason why I had to go through that experience.

So, I need to get quiet; because right now I am so twisted into knots over the simple choice of what class to take, that I have lost my intuitive, creative self.  And this waffling has poured over into all areas of my life, to the point where I feel stuck in a mire of indecisiveness… constantly questioning myself about what choice is the right one and then feeling fearful afterwards that I made the wrong choice.  I am in over-thinking mode.  I am a computer about to overheat and shut down.

So these are the steps I am going to take right now…

1. Turn off all external stimuli
2. Quiet my mind and my body through some deep, cleansing breaths
3. Say a prayer of intention:  “Please let my mind, heart and soul be open to receiving the messages you have to give.  May I not question my one, true intent.  May I trust in the messages I receive and may I have the faith to face my fears and insecurities.  May I embrace all the opportunities that come my way.”
4. Then I will repeat a series of cleansing breaths and clear my mind.
5. I will pose the question to the answer I currently seek.
6. And then I will just listen.
7. I will let the first thought that enters my mind grow in shape and size.
8. If other thoughts start to intrude, I will observe, describe and let them go (for example; “I am feeling fear about making the wrong choice and wasting my scholarship money.”)
9. I will put my hand over my heart and remind myself that I am loved and cared for.

Shine On, Soul Beacon, Shine On!

I have mentioned in many of my posts the idea that each of us has our own Soul Beacon. This is a concept that came to me organically during a moment of extreme illness.  It was a vision and even more so, a “knowing,” that I felt soon after my first near death experience. I was in a “stripped down state,” mentally, physically and most certainly spiritually.  I felt raw and exposed.  But, in this vulnerable state of being, I opened myself up to being completely vulnerable.  I felt as connected and observant as a child when discovering something new in their environment.  I became aware of the flow of energy between people.

I started to notice that energy exchanges could be both positive and negative; they could either lift one up or drain them entirely.  This was not just a feeling; I actually visually experienced this phenomenon. That insight gave me an intuitive knowledge of human interactions that I hold to this day.  When people exchanged laughter or encouraging words, streams of soothing, white strands of light would connect the interacting parties.  I saw this as a “recharging of the soul.”  It was pure energy, being given and being received.

Conversely, when an exchange was less then pleasant or supportive, there wasn’t a free-flowing exchange of energy. The flow would become heavily one-sided, with one party literally “sucking the life” out of another. This would show itself in forms of jealousy, fear, anger, insecurity, and dominance.

I had a clear vision of a beacon of light.  I saw that each of us is born with a cache of energy.  But just like any form of energy, if it is not recharged (refueled), it will deplete.  And when our energy sources are low, we experience depression, illness, sadness, despair, fatigue, hopelessness, and diminishing spirituality.  Most people respond to this feeling by hoarding the small amount of energy they have left.   We don’t share this energy out of fear of running on empty.  But in that hospital room, I discovered the key to unlocking a never-ending supply of energy.  The key is…

You have to give your energy away in order to receive more for yourself.

Give it away?! Yep.   This is where the concept of a Soul Beacon comes in.  Imagine a lighthouse.  The night is foggy and therefore the beacon’s light source barely reaches beyond its own standing.   Now translate that to the situation I spoke of above.  You’re feeling “foggy” and out of sorts, so you only shine your light source on yourself.  You keep your depleting energy close at hand and do not include anyone else in your circle of light.  Eventually, that circle of light will get smaller and smaller until its hardly providing any energy source for you to face the world.  This is the moment when many want to curl up in a ball and tell the world to go away.

This is when you need to stretch your final energy source far and wide; to imagine that Soul Beacon, seated in the center of your body, stretching its fingers of light to illuminate others paths.  Because this is what happens when you do: that light shines on someone else in need; the receiver is then recharged from this positive exchange and shines their light back onto you.  You will feel your inner beacon growing in strength.  With each positive interaction, the foggy veil of sadness and fear will lift.  You will start to have energy to take that next step, and then another.  And the best part is, while you’re recharging your own energy source, you are also giving that gift to someone else!

Who are you going to illuminate today?

How can you reach out in order to replenish your own light source?

What choices can you make today from a place of compassion and faith whether than from fear and insecurity?

How can you shine your Soul Beacon from heart to heart?

Read the story I wrote of a young girl and an old sage in: It All Began With A Beacon of Hope (click link)

Please share your stories and experiences!

Down The Rabbit Hole . . .

Yesterday was my birthday.  My mind naturally traveled to the past while reflecting on the present.  Where have I been?  How did I “get” to this place in time? What experiences have shaped the woman I am today?  At certain times during the day, I found my thoughts tinkering with my history; pulling the dusty boxes of memories off the shelf and peering inside them.  Some were filled with joyful adventures, parts of my life that feel like an exotic dream (I did that?  I was capable of that feat?!)  But, there are, too, those memory boxes filled with reminders of the intense medical experiences I have had over the last 7 years in particular.  7 years!! No wonder, at times, I feel like I fell down the Rabbit Hole only to emerge, like a science fiction character, in some distant, unknown future land, future time.

Cue “flashback music” . . .

I was 34 years young, struggling with increasing pain and rheumatologic symptoms, fighting for years to get a correct diagnosis.  I finally received same; I was told I had a rare autoimmune condition called Relapsing Polychondritis.  Upon research, I discovered a mere 600 other souls had this same disease as me, and that over half of them had been treated by one particular doctor, David E. Trentham. Behold!  He was a scant 6 hours away in my old stomping ground, Boston.  We were excited to both discover this resource and to also have it be available to us in the land we called home for many years.  Road-trip!!

I was quickly accepted into his office and appointments were lined up, plans made, suitcases pack.  We hit the road with hope for my medical future, the first time in a long while we felt this way.  Of course, my array of symptoms being as varied as they were, I was also experiencing some abdominal discomfort that was unusual at the time.  It was waxing and waning, causing sharp, stabbing sensations along with bloating.  Two days before leaving for Boston, the pain was becoming more unbearable, and, hence, more concerning.  I left a message with my primary care doctor about my concerns and when he called me at the end of day, he was brief and extremely abrupt.  He started with a quick over the phone diagnosis: “Sounds like you have a UTI.”  I explained that this felt nothing like a UTI, and he interrupted with the following extremely unhelpful (and unethical) statement, “Well, I don’t know what I’m supposed to do for you.  I’m leaving town in half an hour for a conference.”   Again I tried to get my concerns across, and discovered he had hung up on me after declaring his scheduling needs!

The following morning, the symptoms had increased and I called my primary’s office back to get an urgent care appointment.  Upon seeing another doctor in the practice, he had noted in my chart that my regular PCP thought I may have a UTI.  He commenced with a pee test and instructions to call back; visit over. I sat there with my shirt pulled up, saying, “look at how distended my stomach is!” He never examined me and advised me that if I continued having concerns, he was now passing me off to my GYN.

Well, I certainly did “still have concerns!”  Soon as I got home, I called my GYN.  Now, I also have a history of ruptured and invasive ovarian cysts, so I thought this could be a definitive cause of my symptoms. I spoke with my GYN over the phone, and he too acted like an alien had taken over his mind.  He kept saying, “Sounds like you’re constipated!”  “Nope,” I replied, “I’m pooping regularly.”  “Well, I can’t get you in to see you. So drink lots of water and take a brisk walk!”  I found out later this “brisk walk,” literally could have killed me.  What was wrong with the world today?!

Over the next several days, we traveled to Boston where I met with Dr. Trentham. I only briefly mentioned my abdominal symptoms because I had been told they were “no big deal” and wanted to maximize my time with him discussing the Polychondritis.  But, some funny things were happening… he had ordered a spiral C/T to diagnose cartilage damage in my trachea, and they had discovered “free air” between my lungs. Not a typical finding! As well, my “tummy crud” was getting worse and more frequent.  Dr. Trentham arranged for us to see a pulmonary specialist in Boston in one week’s time. We returned home to Rochester in the meantime.

During the next several days, I called my GYN again with the C/T findings, etc. (after a scheduled appointment with NP in that office was cancelled… by them!) and requested an ultrasound.  They said there was no time before I returned to Boston. So, I took matters in my own hands and scheduled one with no problem. On this imaging they discovered large amount of free air in my abdomen.  Another red flag, doctors!

Now, here comes the Rabbit Hole…

By the time we got back to Boston, 10 days after my symptoms had started, my stomach was 7+ inches distended (!) and I would be gently (not briskly!) walking when I would double over in pain and almost pass out.   I remember lying on the hotel floor imagining myself pulling toxic goo out of my stomach.  I took my hands and drew all this crud to my belly button and out; I could picture green globs trapped in bubbles, heavily floating away, which I would then shoot with my imaginary Annie Oakley gun into oblivion. I truly believe this intuitive visual exercise prolonged my life!

Friday morning arrived, the day of my pulmonary visit, and I was now hallucinating.  The pink and green swirled hotel carpeting would take life and dance before my eyes.  Lightning bolts of pain flashed across my belly. But, for some God forsaken reason, I kept trucking along, even going as far as completing my pulmonary function test in this “altered state!” It was two pulmonary fellows who would in the end save my life.  They came in to exam me, and upon reading my C/T scan and physically examining me (what a novel idea!), they immediately told me I had to rush to the ED; this free air was not from my lungs, it was coming from my abdomen. Not good. Not good at all . . .

I then found myself all alone in the ED department; my husband off to check into our hotel.  By this point, it is like I had eaten a pound of psychotropic mushrooms; faces are melting, walls are breathing.  I am living in the middle of a Dali painting.  I can tell I am going to pass out any moment if I don’t get help, so I start the long journey from my seat to the desk. I am walking like Gumby, rubbery legs and arms struggling to remember the simple act of taking steps. With each exaggerated stride, people’s faces were like cartoon characters, enlarged heads and distorted features leaning into my face and then away. It was like looking through a fish eye lens.

Well, I made it to that desk, and they immediately placed me a on a gurney.  By the time my husband returned, I had learned I was a “very, very sick young lady who was extremely lucky to be alive.”

My colon had ruptured (perforated) and I had been septic for 10 days!  Basically, a medical implausibility. I learned that this was like a person walking around with a ruptured appendix for over a week.  But, being my colon, which is the last part of your bowel, I was filled with feces and infection (hence the infamous “green goo!”). The doctors felt the only thing that had kept me alive was the fact that I was on 80mg. of Prednisone daily at the time for my disease (about 16x a regular dose!).

Then, we received the most harrowing news I had ever heard (up until that point) . . .

It was around midnight, I was on deck for the next available OR room.  The resident came in and asked Dave and I if “we were prepared?”  We replied that, yes, we’re all “prepared” for surgery.  And she shook her head.  “No, I mean, have you said your goodbyes?”  We sputtered, “What?”  “You have to know, this surgery is extremely risky and your wife is incredibly sick.  She is dying and there is only a 10% chance she will make it through the night.”  10%!  But, we did not say good bye.  We said “I love you.”   We said, “I’ll see you in just a short bit.”  We believed.  We had hope.

This was only the beginning of a 5 year saga, one that will come more and more into the light as I write my blog, I’m sure.  But, as I am reflecting on the anniversary of my first birth, I also remember the times I’ve been reborn since.  I know there are angels watching over me; there are so many ways I was “saved” that fateful night.  But, I think the strongest medicine, was already inside me.  I refused to take the doctor’s (inept) assessments at face value without advocating for my own care.  I believed I was ridding myself of toxins lying on that hotel floor.  And I had unwavering faith that I was going to make it through that night.

So, I may have “lost” half a decade or more to this one crazy chain of events.  But, I’m alive today to tell my tale.  I’m alive today to pull myself out of that Rabbit Hole and into the Light of Life!

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!).

hugs, exponential

Several months ago I was at a Unitarian Universalist service where the meditation reading was about making physical connections.  The sermon was about following in the footsteps of role-models who have lived before us from as far back as Jesus Christ to the most recent losses in each of our individual lives.  I hesitate to bring theology into my blog and there are many different views and individual opinions as to whether Jesus is the son of God.  But one thing almost everyone can agree on is that Jesus was an influential figure who has positively impacted people with his compassionate ways for thousands of years.  This day, the focus of the sermon was on the historical facts, so that each individual could take away their own interpretation and, in turn, motivation to “live differently”from the example of this man’s life.

I, personally, feel strongly about the ways to carry his message on in my own life.  To me this means:

What can I do in each of my interactions, with both people known to me and those who have yet to be known, to spread a message of love and hope?  How can I look beyond external qualities to see the energy of the soul that lies beneath all of us?  How can I recognize when someone else is in need and reach outside of myself to embrace them, support them, lift them up, hold their space, help them to feel loved?

It doesn’t have to be a “grand gesture,” sometimes the smallest package carries the biggest present: a kind word, a reassuring smile… a hug.

While the pastor was encouraging us to “think compassionately,” I started to hear a small, insistent voice in my head.  It whispered, “Lean forward; give Erin a hug.”  I tried to shush this increasingly louder refrain and refocus my attention on listening to the remainder of the sermon.  The voice continued, becoming more and more demanding.  I attempted to quiet my mind, “Stop it!  I’ll give her a hug after the service.  It’s not appropriate right now!”  Now mind you, we were sitting in front of the entire congregation, second row, with Erin seated in the front row.  As well, this women I was being “encouraged” to reach out to, I know only as a social acquaintance and had no idea how she would receive my “spontaneous hug.”  Let’s face it; I was overly concerned about social decorum (completely missing the mark on this opportunity to practice compassion)!

But, I soon realized that this voice wasn’t coming from my head.  It was coming from my heart.  And not only was I trying to quiet an idea born of love, I was directly being willful in the eye of an opportunity to live like Jesus, to carry on the love of those who have died before me.  For me, I was reminded of my father, and the hugs he would so freely share with others.  I was ignoring a direct calling to spread that love out to someone else in need.

So, I embraced this request, subtly leaning forward to touch Erin on the shoulder.  I was just in the middle of quietly saying, “I don’t know why, but I am supposed to give you a hug right now”   when she turned towards me, tears silently streaming down her face.  I didn’t know it at the time, but the sermon had sparked an emotional response of personal loss.  And she was holding all of these feelings alone.  If I had not trusted my intuitive voice, she would of never felt held… felt the love I had to share with her at that moment.  She would have stayed abandoned with her pain.  The hug was brief and even a bit awkward.  But her shoulders relaxed, my mind quieted, and we both felt… at peace.  And after the service, she sought me out for a deep, enveloping embrace, where we just held each other.  Nothing had to be said.  But we both left with a quiet “thank you,” because each of us had been uplifted by the exchange of loving energy.

That same night, I couldn’t get these thoughts and feelings out of my mind as I was going to sleep.  I knew I had to write them down and I proceeded to document one of my infamous “blind poems” (random thoughts written across a found scrap of paper, sans light).  That poem was so organically “right,” I never made a single change to it.  And there is something powerful (I think) in hearing it spoken aloud.  So above is the video creation of that poem, “Hugs, Exponential.”

May it inspire you to listen to that deep inner voice… to reach outside of yourself to embrace another… to be vulnerable, and to reap the multitude of gifts that comes from this openness.

Think Fast! Here Comes Another of Life’s Curve Balls

I actually do not know where to begin.  Life threw me another curve ball and I am beginning to discover I am quite the adaptable catcher, born out of pure need.  We returned Thursday night from a wonderful yurting experience and I hit the ground running Friday morning (well, limping, actually!).  A friend and I met and went to our monthly spiritual group.  This month’s topic? Delight.  Finding delight in all areas of life (from sunsets to warm soapy water when washing dishes) and discussing feeling worthy of receiving delight.

A conversation arose about my ability to find delight even in the most “unpleasant of circumstances.”  Little did I know that this theory was going to be put to one of my most challenging tests mere hours later.

We were in the car in my driveway post gathering, waxing poetic, as this friend and I can so easily do, when my husband came out with furrowed brow.  “Um, Tam, I’m sorry to interrupt.  But, I just found out that Nick was killed in a motorcycle accident while we were away.”  My mind sputters, “whhh..at? WHAT?!”  We embrace.  A state of shock quickly follows this sudden news.

There are no ways to describe losing a peer; a man in the summer of his life, just reaching the peak of his full potential.  A friend who when described, the most often used adjectives are “vivacious” and “vibrant.”  Nick, who sparkled with life and quickly drew anyone and everyone into his light.  As his father said, “he lived large.”  And that he did.  But, shouldn’t he still be living that life?  Where is “God’ Plan” in a circumstance such as this?  Yet, there is no plan.  I do not believe God is sitting on a perch high above, pointing his finger, declaring “You shall live and you shall die.” It all feels so senseless.  But, just as I can find delight in unpleasant times, I can also find meaning in the most dire  of circumstances. . .

When his brother spoke at the funeral, he told of a hike the two of them had taken together on Nick’s 40^th birthday, about four years ago.   Chuckling, he said they spent the entire time talking about life’s philosophy.  At one point, Nick turned towards his brother and said, “Doug, How do you make it to the next Christmas? You know how you look forward to Christmas for weeks heading up to it?  As the anticipation grows, so does the excitement.  Each day closer builds suspense for that ‘big day.’  And then Christmas arrives and it’s fantastic.  But then you wake up the next morning at a loss.  You can’t start gearing up for the next Christmas yet, because 12 months of waiting would just be too long.  So you start to wonder how you’re going to make it until the next fall when life begins to feel good again.  How do you make it through those days, Doug?”  Even though Nick burned with the intensity of life on the outside, inside he struggled with his own inner peace.  But, this is where his brother continued the story. He shared that this was a turning point for Nick, a time where he decided to make a lot of changes in his life, to reach out for help from others and to change his philosophy on living life.

Nick began living his life “one day at a time.”  He knew that all he had to worry about was just getting through the next day.   And not only did that bring life back down to a manageable size, he now also greeted each day with the thought, “how am I going to fully embrace life for today?”  And embrace it, he did… if he thought of a long lost friend, he would call them.  If it was his brother’s 40^th birthday, he hopped in the car and drove 5 hours to surprise him for dinner.  One day, he grabbed his son and they got on a train headed east until they wanted to get off; they stopped for some lunch at a random train station and got back on for the return trip home.  Just because.  He promised his daughter the same when she got a bit older.  That father daughter trip (this time a spontaneous day trip from Rochester, NY to Chicago), happened just two weeks ago.  If he hadn’t taken the approach of “one day at a time” and instead was waiting for “that perfect day in the ‘sometime’ future,” that trip may never have happened.   But instead, his children now have this memory to relive and hold on to anytime they miss their dad.

During the service, the minister used several metaphorical stories.  He first spoke of seed packets and the date that is stamped on the back declaring how soon (or how long) a particular vegetable will reach “peak harvest.”  He asked that if we were to know that date when a child was born, when a friend was made, when a mate was found, would we send them back or turn them away if the date was too short?  If the harvest of their life came at 2 years, 16 years… 44 years? Of course not.  We would choose to embrace the time we have with them, to not waste a precious moment.  And since we do not have the insight into these dates on living beings (thankfully), we need to approach each day fully, to not waste another moment to embrace those we love.

On this note, he spoke of a couple who just celebrated their 75^th wedding anniversary.  When asked the typical question, “how do you make a marriage last?”  The husband told of a gift given to him by his father on his wedding day.  It was a pocket-watch and when opened it was engraved with these words, “Say something nice to Sarah.”  What a beautiful, simple reminder; each time you check the time, pause to share a kind word with the loved one next to you.  In a sense this could be extended to anyone next to you.  Perhaps that person is a stranger who so desperately needs to hear a gentle word on that day.

And that brings me full circle back to my friend Nick.  Nick employed these techniques in his interactions, every moment of his day.  There were people at his funeral who had only known him a few months, but felt just as deeply connected to him as those who have known him for years.  Because he would notice that person standing at the sidelines, feeling uncomfortable, and he would draw them into the fold.  He loved to engage in a volley of the minds and was very knowledgeable on a wide range of topics.  But he would always encourage others to educate him and challenge his mind.  He made you feel special, respected and heard.  That’s a gift we can all take away from his life.

When his father spoke, he read from 1 Corinthians 4-13 (abbreviated quote below):

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud.  It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres… Love never fails… For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

 And now these three remain: faith, hope and love. But the greatest of these is love.”

Most of us are familiar with this reading from weddings.  It is not often read at the time of a death.  But, why not?  Death of the physical body cannot extinguish the soul of the person; the place that holds LOVE.

We were charged with carrying this message forth as we left the church.  Of continuing Nick’s legacy by remembering these words of compassion and kindness.  The minister told us to find people who do not have love in their life, and bring it to them.  To pass on our love to others.  To think of what Nick would have done in a similar situation.  And although it does not ease the deep hole of pain and loss burning in my heart right now, I find comfort in this concrete action I can take.

And this is where I find peace in “God’s plan.”  God’s will is not for us to wither and become hardened by the loss of someone (far too soon); it is to continue the spirit of that person in the living.

As Thomas Campbell said…

“To live in the hearts of those left behind is not to die.”

When we question the “why” of mortality, we often also question the “why me?” of life in general. “Why was I given this chronic illness?  Why do I have to struggle? Why does my loved one have to suffer? Why do the ones I love have to leave me?”   But, perhaps we are asking the wrong question.  Instead of “Why me?” how about asking “what next?”

So, “What’s Next?!”  What are you going to do with your one day?  Each morning starts a new one: a new opportunity to fully embrace life and those we love.  And if today’s the day you are struggling with how to make it to the next Christmas, remember, it’s just one day you have to get through before the winds change and different one arrives just 24 hours later…

·         How can you Spread Love today?

·         When you check the time, what loved one is nearby? Say something kind to them…    **That loved one may just be yourself!!**

·         What spontaneous act can you do today to fully live the next 24 hours?  (from a train ride to sitting outside and watching the birds nest to calling a family member to remind them how much they mean to you).

·         Who can you write a “love letter” to today?… one to yourself, marked to open one year from now? one to your mate that you stick in the mail so they get a surprise in 2 days? a note to your child for them to open when they turn 18? or a letter to someone who died before you had the chance to tell them how much they meant to your life?  Love letters can HEAL