Tag Archive | Conditions and Diseases

The Gift of Illness: A Re-Invention of Self

"See simplicity in the complicated Achieve greatness in little things." {Lao-Tzu}

“See simplicity in the complicated
Achieve greatness in little things.”

There are two ways I can look at my illness: 1. “It was the end of my world” or 2. “It was the start of a Brave New World.”  Today, I choose option #2.  The option of Hope, hope for a new world, a new beginning.  I am in no way trying to profess that this was an easy choice!  I lived with both perspectives and took time before making a final decision.  I don’t think I would be in the place of peace I am today if I hadn’t lived with both the Paths of Despair and of Hope.My hope lies in the recognition of an opportunity to reinvent my life. 

I can actually have gratitude for my chronic illness today (imagine that!).  Because when I look objectively at my life “in the now,” I have been afforded opportunities to discover and develop parts of myself I didn’t even know existed before.  In saying “before,” I mean the time before my autoimmune disease (Polychondritis, Fibromyalgia, Migraine, Chron’s) stopped me from working, and let’s be honest, engaging in most of my previous activities.  In this “T.B.,” I was a Type-A, “go, go, go girl!” I was (egotistically) proud of my ability to multitask and juggle all parts of my life, during all parts of my day.  No breaks! Believing all that “idle hands make idle minds” crap. I mean, really, what was I constantly rushing around for?  Sure I received accolades and “atta girls” from all facets of my life.  But, in the end they were just words; words with no real meaning because they didn’t originate from within me.

Lately I’ve begun to look at this change in my life differently…

I’ve started to celebrate the fact that I was given the gift of reinventing myself!  I look around and see most people on the same path for 40+ years of their adulthood.  And many are content with their journey. But few, too, are afforded the luxury of stepping off the established path and taking side-trails until they re-discover a new route that fits for the next phase of their life.  Luxury?  How can I call chronic-illness a luxury?!  Well, for as much as it has taken away from me (which is plenty!) it has returned, just in different forms than I was used to.  It would be (and has been) easy for me to overlook these new “gifts” ahead of me because I am spending my time looking back at all the things that have been stolen from my life, on a constant hunt to retrieve that which has been lost.  It’s not atypical to be stuck on what once was and is now gone; because trusting in an unknown future is a far scarier prospect.  But this approach only caused me constant emotional pain, regret, sadness, and emptiness.

Then, one day, I decided to look forward. I picked up one of these “new gifts” lying in my (new) path and opened it.  Inside I discovered an opportunity to awaken my inner artist.  It came in the form of a night nurse who suggested I begin beading to pass the time during my lengthy hospital stays.  I was quickly hooked, finding this quiet, meditative activity deeply soothing to my mind and pain fluctuations.  In a short time, I was selling my creations out of my “hospital room storefront” (no joke!) to all the staff.  This first step on this Road to Artist boosted my confidence and helped me to feel productive again.  The best gift was the positive energy I gained and shared with the influx of visitors coming in and out of my room, nurturing my own Soul Beacon of Hope.

After veering off what I thought was going to be “My Path for Life,” which I blamed my illness for taking from me, I realized the first step was the hardest.  I’ve taken many breaks along this new way, some chosen by me and some chosen for me by my ailing body.  But when I reflect on the anguish I first felt at “losing” all the things I thought made me “me” and then I fast forward 7 years to today, I discover that I am now an artist, a writer, a truly present friend and wife, a seeker of peace, a role-model of hope and acceptance, and a Survivor!  I started to look at all things I’ve gained.  No, none of those things would be placed on a resume.  But for me they are far greater accomplishments than all of my professional and schooling achievements.  They are my re-invention of self!

Just the other day, in the midst of painting, my husband commented, “You know, in a strange way, you getting sick was a blessing.  You would never have become the artist you are today if you had continued to be so consumed with work.”  And he’s right!  It used to be hard for me to recognize that a blessing of this magnitude could arise from such severe, sudden illness.  Oh, I’ve always had a hopeful heart and been able to recognize small, daily gifts of gratitude, from a helpful friend to a stunning sunset.  But, again, this was gratitude for all the things outside of me.  To have gratitude for what’s within me?. . . now that’s a truly miraculous discovery!

I was able to pursue a solid career in early childhood education for 15 years.  Now, I am on Re-Invention Phase Two: becoming both a Creative Person and a Beacon of Hope for others. Herein lays the miracle: I can reinvent myself again at any time! It may be self-directed or Universe-directed, but either way, I am staying open to the change. And am embracing the NOW… where I can truly find gratitude in being sick!


Best Laid Plans . . .

If there’s one thing chronic disease has taught me, it’s flexibility!

Here we are all geared up for our Yurt Excursion and I come down with an awful stomach virus that completely disabled me.  There was no “grin and bear it;” I was so dehydrated and feverish I couldn’t even think straight, let alone travel.  So, once again, we have to attempt to re-schedule vacation plans.  A call is made to the “Yurt Man” and he informs us he has a strict “no cancellation policy.”  Mind you, the money has already been taken from our account.  And, for us, the cost of this mini-vacation is not expendable income! We worked and scrimped and saved to afford this get away.

Here marches in the messengers of “Doubt” and “Guilt,” followed closely by “Shame.”  My husband, in his frustration, begins to get upset… “Why do we always have to cancel our vacation plans?  Why do I even work, if we’re just going to have to throw away the money?!  We should just stop planning anything, and then I will have nothing to be disappointed about!”  Of course, I internalize these mutterings, and hear them as… “Your disease takes away all the enjoyment in life.  If it wasn’t for you always being sick, we could go away.  You and life with you are a disappointment.”  And here is the conundrum of the chronically ill and their caregivers.  He needed to be heard.   And I needed to be reassured.  And neither of us was wrong.  I felt deep shame over (almost) always being the source of our need to change plans at the last moment.  This time, it wasn’t even the illness we know, it was some random super bug either one of us could have come down with… it just happened to me.  And he felt disappointment, and in that moment, couldn’t see a way through the situation.  We both felt stuck.

Luckily we have a relationship built on trust and communication, tools honed through many years together.  I retreated into myself for a while and he did the same.   But I poked myself out of my protective shell and “risked” telling him how I was feeling.  He was able to pause and reflect on what was really making him upset.  I gave him the option of planning solo trips; I truly felt (and feel) that a compromise may look like us diverging on our separate paths at times.  But, he was not keen on this idea.  And let me know his disappointed lied in not being to taking a trip with me, not in the trip itself.  Phew!  Big sigh of relief, one I didn’t even know I was holding my breath on!

Once we both felt “heard,” we were able to reassess the situation and come up with alternative options.  The bags were already packed so why not wait out the virus another 12 hours and see if things look differently in the morning?  And, blessedly, they did!  I was still only about 65% but it was a doable percentage of health!  I am used to traveling “under par.”  We called the “Yurt Man” and had another prayer answered.  He told us we could extend our stay a night to make up for the night missed.  In the end, we ended up getting even more time there (extra hours on our arrival and departure days).

Because we’ve learned flexibility in dealing with my myriad of conditions, we were able to view all sides of the problem and come up with multiple solutions.  This is a gift of having chronic illness!  Most people aren’t challenged on a daily basis to constantly reassess their mood, physical ability, needed accommodations, time, energy and scheduled plans.  At times, this may feel like a burden.  But when posed with an unexpected challenge, you have the resources to think outside of the box!  That’s the gift.

Because we were flexible, I’ve just returned from four glorious days in nature.  Yurting was our first “adjustment,” providing us an outdoor camping experience with the luxury of a raised futon bed and even indoor plumbing!  And what a prize we received for searching for an unique vacation that would suit our needs… views of 80 acres all to ourselves; an abundance of wildlife (from Baltimore Oriels to Barred Owls to even an exotic blue hummingbird that buzzed right up each of our noses, to night coyotes and morning fawns… the list goes on and on!); an opportunity to take off the watch and forget about T.V.; moments to re-connect through Scabble and Yahtzee challenges and the nightly ritual of reading each other to sleep; and a chance for my first foray into Plein Air painting, interpreting the hills and mists and wildflowers from across my field of vision onto my canvas.

The blessing of replenishing the all of me ~ mind, body and spirit.

But the best gift of all?  The self-knowledge that just because I have chronic disease doesn’t mean I have to stop living.  It’s just one more example of how I am living differently.  Recently, my mom said to me that she feared planning a trip together, not knowing “what my body could handle.”  My gut response was, “I don’t know what my body can handle on any given day, in any given hour.  But I also don’t want to let the fear of that keep me from planning anything in my life!  People travel with all sorts of abilities and special needs.  I can’t wait to live my life until I feel better.  This is my life and I want to live it now!

After this excursion, I truly believe those brave words I so brazenly declared!


Go out and adventure and then let me know what you discover about yourself and what you can do!!

The Art of HOPE


Image“A human life is like a single letter of the alphabet.

It can be meaningless.  Or it can be part of a great meaning.”

(Talmudic Zen)

I’ve always lived from the heart and been a child of wonder and light, but the static of everyday clouded my vision.  Until 8 years ago when I became so sick; I was on the brink of death.  To others this would be a curse, but to me it was a great gift… of insight, of love, of light, of Hope… of Living from the Heart.

I was stripped bare of all external armor, and all that was left was the rawest sense of my being.  This sounds frightening at first.  We need our protective shells to survive, right?  In some respects, that’s true.  But in so many other ways, the same armor that protects us from life’s pratfalls, also keeps us from falling.  And sometimes we just need to fall in order to be caught.

Today, I was preparing to publish an entirely different post when I came across the marvelous blog:  http://heartflow2013.wordpress.com/ Reading about his experiences “Living from the Heart,” struck such a deep chord within me, I instantly knew this is what I was supposed to write about today;  I decided to follow my heart.

I’ve struggled over the years in how to explain to others about what happened to me when I nearly died (on three separate occasions!).  But I also know my experiences can benefit others.  So, just for today, I’ll begin to tell my tale… 

I believe that to live without an exoskeleton, means I listen to my heart when it speaks.  I don’t question it, justify my behaviors, judge my thoughts.  In other words, I don’t let my head take over for my heart.

And isn’t this most of ours “go-to place?”  We’re taught that strength lies in pragmatic thinking.  In analyzing our behaviors and reactions to situations.  In measuring our responses to the ways others may respond back to us.  To put on a front.  To bury our hearts deep below a fatty layer of protective tissue.

When one comments, “Oh, she’s one to wear her heart on her sleeve!,” it’s not generally meant as a compliment.  It’s “those people” who can’t keep their emotions in check, who are reactive, who are overly sensitive.

But I see this so differently!  There is a freedom in leading with your heart.  A freeing of your one true nature.

After I awoke in the hospital ICU, I was stripped bare (and I’m not just talking about the flimsy gowns!).  It was like all the external stimuli had dropped away, and I was now relating at the most humanistic of levels.  The language I heard was of heart-heart, soul-soul.  At first, it was like I was now hearing in colors. I know, I know, it sounds a little wacky.  But that’s just because it goes against the grain of everything we’ve been taught.

But try thinking of it this way… we live in a world of a thousand languages.  Yet, at some elemental level, we all speak the same language, right?  We all walk to the same life beat, right?  That’s the language of souls.  That’s a conversation in color.

When I was at my most physically vulnerable state, I was presented the greatest gift of my life: the gift of sight.  I began to notice that people dragged around wisps of light and color with them.  Some would glow, some would breathe and for others, it appeared as a gauzy cloak enveloping their entire body.  At first, I didn’t pay it much heed instead attributing these visual anomalies to drug-induced hallucinations combined with a severely weakened physical and mental state.   But as my body regained its strength and my mind its clarity, I discovered that these visual auras stayed.  And not only was I able to see the energy that encompasses each human, I became aware of how my energy interacted with theirs.  I witnessed energy being drained by hostile and negative encounters; and inversely, how the energy would grow bigger and brighter after positive and uplifting exchanges.  So I began to experiment with my own interactions.

I discovered that we all have a tendency to hoard our cache load of energy.  We live in a fear-induced state where we are afraid to become completed depleted by the giving away of ourselves.  I was certainly in a physically depleted state.  All my energies were directed at pure survival.  But, what is surviving without soul… that’s just thriving.  And I didn’t want to thrive; I wanted to and still want to SURVIVE!

And to truly survive, you need the energy and love from others.  I had a vision of sorts that inside each of us is a Beacon of Light & Hope.  I named this our “Soul Beacons” (c.).   Over the next few days, I’m going to post a variety of current day experiences that highlight the strength of living from the heart and embracing Hope in everything and everyone.  How in shining your Soul Beacon out, illuminating the pathway for others they, in turn, will light your way.   It shows itself in big ways and small ways, in expected and unexpected ways, and in a variety of interactions.

I have felt the floor disappear between my feet, the walls crumble between people, and my soul merge and meld with all around me.  I have experienced the spirit within all of us.  It was so obvious and easy to participate in the flow of energies from soul to soul, when I had no external distractions.  But as I have become healthier and therefore more immersed in daily life, I’ve also been re-exposed to all the daily noise.  The static that clutters our minds, and clouds are hearts. 

To practice the Art of Hope takes dedication.  What interactions will you have today that are purely heart to heart?  How can you reach out your heart to another?  How can you embrace the energy that will flow freely back to you?  In what ways can you center your thoughts, clear away the clutter of your mind, and get in tune with what your heart truly wants?

Perhaps I should come with a warning label?

Why do I have the need to let people know right off the bat that I’m broken?  Perhaps, if they acknowledge that they are already dealing with “damaged goods,” their expectations of me will be lowered.  And therefore they won’t be disappointed when, eventually, as always happens, the true nature of my abilities (disabilities?) are revealed?

As so many of us that deal with chronic illness, especially those on the “autoimmune spectrum,” my illness is all on the inside.  At first glance, I appear to be a healthy, well put together woman.  My skin doesn’t look wrinkled or marred (as long as you don’t get a peek under my shirt at my surgical scars!);  I enjoy dressing in cheerful colors; I’ve applied a layer of make-up to brighten up my pale face and disguise the circles under my eyes.  I am not gaunt, in fact my multiple meds. give me quite the “robust” appearance!  I am putting on a show!   But inside… now that’s marching to the beat of a whole different drummer!  While I stand smiling at you, nodding at your comments, and putting on my happy, hopeful face, there is a war going on inside me.  One that I am rapidly losing.  The Autoimmune Army has already marched its way across my muscles, joints and cartilage, my colon and small bowel, my spine, my cranium, my nervous system, my kidneys, even my heart, giving me an atypical heart attack at 39!  At that’s just a quick summary.

So, how do I rectify these two disparate sides of myself?  I am both… I truly am the happy, hopeful person you see on the outside; the one who enjoys feeling pretty, who craves to be “normal.”  But I am also the hurting, struggling woman who has to fight her way through each day.  Whose participation in the simplest of social activities will knock her out for days.  Whose attempt at the most minor household chores sends her into tears of frustration.

So, I think, perhaps I should come with a warning label:  Contents may be different than they appear.   But, that’s really not the answer either.  Because then I have already disqualified myself, undermined my abilities.  I truly don’t know what I’ll be able to do on a given day.  But what if it’s one of those rare “good days?!”  The ones we all hold on for.  I’ve already discounted the weight of this by telling everyone I’m just not up to par.

There is no clear answer here and my approach continues to fluctuate.  But, the most important thing I’ve learned is not to count myself out.  And to seek out friends who are kind, caring, and, most of all, flexible.  And then share with them the “truth,” my own reality, and see how they react.  I wouldn’t go on a blind date and immediately blurt out my deepest secrets.  So why would I want to include any of this in an initial introduction: “Hi, my name’s Tamara.  Glad to meet you. Oh, and by the way, I’m a broken, hurting person… just so you know.”  How ridiculous is that?

I am not broken!  I am complex!  I am unique!  I don’t take life for granted, because every moment presents a new opportunity to learn something about myself or the world.  I have deep empathy for people with a wide range of conditions.  I get you, and you get me.  We are not alone!

It’s during these times, that I gently remind myself to push the pause button.  To take a deep breath.  And to practice a beautifully healing mantra my friend Lisa shared with me.  I’ve just paused and given myself this gift.  Now, I am going to pass it on to you…

Nature's Love

Nature’s Love

1.   Take 4 deep, cleansing breaths

2.  Place your right hand over your heart (the most important step… give yourself the gift of this healing touch!)

3.  Repeat this mantra 4 times:

“I am a whole and lovable person just as I am.”

“I am a whole and lovable person just as I am.”

“I am a whole and lovable person just as I am.”

“I am a whole and lovable person juts as I am.”

4.  Allow yourself a few minutes of relaxation.  Breathing love into yourself, feeling the power of being uniquely you.

The beauty of this exercise is that it can be done anywhere and at any time.  Even in a room full of people, no one will notice if you casually place your hand on your heart and silently repeat the mantra.  After a while, just the touch alone is a soothing reminder to bring you back to center.

I would love to hear about what techniques others employ to remind themselves that they are right where they are supposed to be.  That they are right who they are supposed to be.  Please share your thoughts and comments!