Tag Archive | Fatigue

Toeing The Elusive Line of Life


I am always trying to pin down that elusive line between doing too much and not engaging enough.  Dancing just over the edge into the land of “I am going to enjoy this adventure today even though I will ‘pay’ for it later” and standing at safe distance back, “forgoing opportunities for the sake of protecting my body from the ‘over-do’.”

To me this line is LIFE.

And I am not ready to give up on life yet; to fade into the background, observing others from behind my own personal protective observation glass.

Yes, this option ensures a more stable physical state of being. But it doesn’t guarantee it. I am just as likely to experience an unexpected (I was going to say “unplanned for,” but aren’t they all?!) flare of my physical symptoms after days resting “safely” on my couch.

And there is always one thing that suffers from my hesitancy to participate… my emotional well-being.

So it all comes down to another elusive concept: BALANCE.

I don’t think this is a plight just of the chronically ill.  We may suffer more serious consequences for misjudging our abilities to participate, but I know just as many well-bodied friends who also struggle with this.  Their “price” may just look different: stress, fatigue, or loss of time.

As I tiptoe around my Line of Life, I am getting better acquainted with my limits. For me, I know I will pay a steep price, so I weigh my options and choose the ones that are the most appealing and unique. 

I now pause before I make any commitment (I used to “over-commit” to everything for fear of saying no, only to have to constantly cancel at the last minute, frustrating everyone).

I check in with myself- mind, body and spirit.  I take my own set of vitals, so to speak.

And, no matter what my decision is, I try to clearly communicate with the invitee. I think the guidelines I have set up for myself can be applied to a wide range of situations and people.

It usually comes down to three categories:

  1. “I’m sorry, I have to decline this time. But please don’t let this keep you from asking me in the future [big fear=being “forgotten”].  My physical well- or unwell-being is constantly fluctuating.” (insert your limits: time; commitments; family obligations; job stress; etc.).
  2. “If it’s okay, I am going to have to wait and decide nearer to or on the day of.  I’m just not sure how I’ll be feeling from day to day right now and I don’t want to over-commit.”
  3. OR: “I would love to accept! I am planning on being able to participate but if my body takes a down-turn, I may have to change plans at the last minute.  Are you okay with that?”

I have discovered that the honest approach best serves myself and others. Most of us want to “people please” and in doing so can create an environment of always saying “yes,” leading to feelings of stress and resentment later or a constant cycle of saying yes and then having to change our minds/plans.

By giving people an open look into your life, you are showing trust in the relationship.  As well, I try to always give people the option of letting me know if last-minute changes are uncomfortable for them.  Of course I wish everyone could be supremely flexible to my needs. But some cannot. And this is all part of accepting both my and others’ limitations.

You’ll also begin to discover the friends who truly do understand and are willing to adjust the typical “friendship guidelines” to maintain a relationship with you and those that are just “good time friends.” And that’s okay.

The week-end before last was one of those “seize the moment” opportunities for me.  A friend spontaneously invited me on Thursday to accompany her to Pittsburgh, PA for a one-of-a-kind puppet play by Heather Henson (Jim’s daughter- yes, The Muppets’ Jim!). Now, this was a huge risk for me. It was for just one night and would require a minimum drive of 6 hours both ways. Two “no-no’s” in my typical Boundary Box. But sometimes boundaries are meant to be broken, and this was one of those times.

Not only was it an amazing adventure and bonding experience with a dear girlfriend, it provided me a chance to be honest about my chronic illness in a way I have not before.  Traveling that close with some requires intimacy and vulnerability. And I was proud of myself for not hiding behind the mask of, “I’m okay.”

She knew I had to make many rest and stretch stops.  She saw my feet and ankles swell to the size of Nerf balls. She observed my nightly ritual of 20+ medications. She listened to me when I explained the complexity and history of my disease. She witnessed the “sudden coming” of a severe migraine. She saw me grow breathless because of my pericarditis (fluid around the heart) and the necessity of many “sit and rest” periods as we trekked around the city.

She saw the all of me. And she embraced and accepted me as I am.

Yes, I’m paying the steep price of admission still now 7 days post, but I wouldn’t have changed a thing about this experience. Can I always make this choice? No. But I am also not going to let my fears get in the way of considering similar spontaneous opportunities in the future. I used to always live my life this way… seizing crazy last-minute excursions left and right. And I forgot how much I love that.

I forgot what it is like to not only dip my toe over the edge into the Waters of Life, but to plunge head first into the icy chill of the thrill only to come up breathless by embracing the All of Life.

Where are you making choices in your life that serve not only your physical and mental needs, but also your spiritual and emotional needs? Perhaps you aren’t shying away from “frivolous experiences” because of the limitations of an illness, but because you are overwhelmed and stressed by the sheer complexity of living and balancing life, work and family.

Where and when can you throw caution to the wind, even for just an hour, and do something just for the sake of doing it?

Go on… life’s waiting for you!


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!

It’s Been One of Those Weeks!


It’s been one of those weeks months years!!

I’m in a melancholy frame of mind.  Each day I awake expecting a different return on my daily investment.  And each day it has played out the same story: beginning with hopefulness, ending in defeat.  Yet, I keep getting up and trying again… One Day at a Time.

I can trace this defeatist attitude back to the beginning of last week; the unofficial end of summer, Labor Day.  It’s that time of year when fall ushers in a season of transition, rest and reflection.  My husband and I were struck by the lack of memories created this past summer.  We were overwhelmed by a year that had contained one “loss” after another.  No, it wasn’t a traumatic year (health wise); we’ve certainly have had our share of those.  But in its mundaneness, it almost felt worse.  We felt we truly had nothing to show for the past nine months of “just getting by.”

It’s been a year of “take-aways.”  It has felt like we have been punished, our privileges revoked, for actions we didn’t commit.   We’ve had to accept one “reality of life” after another, with no reprieve.  After five years (!) of a pending lawsuit against the medical providers that ignored my acute symptoms resulting in a ruptured colon, sepsis lasting two weeks, and culminating in the infamous words, “You have a 10% chance of making it through the surgery. You need to say goodbye to your husband,” we were told we had to drop the case.  That there was no doubt the evidence showed clear negligence on the doctor’s part (they even admitted to such in deposition!), but my multiple underlying conditions muddied the waters so much that a jury would be hard pressed to agree on a guilty verdict (and we would be out upwards of $200,000 for even trying).  Hence, Loss #1: no chance of financial security for you two!  Then, just mere months later, we were informed by my GYN that we should never, ever, ever attempt to get pregnant, because doing so would result in a 95% chance of death (for both myself and the fetus).  Major Loss #2: life-long hope, wish, most-certain dream, dashed.   And this cycle of loss has continued; punishments administered just by the sheer fact that I am sick.  They haven’t all been so big and life-altering, but the small punches knock you down over time just the same.

It’s also been a year of “give-aways.”  Unfortunately, not like the Prize Patrol kind, but the bill man’s at the door requesting you give-away all your money kind!  Every time we’ve accumulated a small nest egg to take a trip or do something “normal” (like go out to dinner), we’ve been hit by another unexpected financial necessity: the cat’s been sick, the van’s been sick, my feet are sick and need new soles, on and on!  Thankfully we’ve been able to cover these excessive, unexpected expenses, but it’s also left the cookie jar empty… not even a crumb for a desperate late night snack.   I’m feeling this so markedly in this time and space, because it is now, today, that we were supposed to be on our vacation to Cape Cod; our “healing respite” we called it.  Yet, one more thing we looked forward to for months that we had to forsake, just to get by in the living present.

And, that’s it… the only thing certain in my life is The Present: this very moment in front of me.  My husband bemoans that we should never plan anything, we just have to cancel it anyways.  And, to some extent, I agree.  It’s extremely discouraging to get your hopes up only to have them dashed down over and over again.  It’s one hell-ride of a roller coaster.  But, I can’t go through life without having dreams.  At the same time, it’s a stark reminder to live and enjoy each present moment, regardless of what you are looking forward to on the horizon.  Sometimes, we have our heads stuck so far up in the clouds, we forget to enjoy the amazing scenery beneath our feet.

I admit; I’ve been in a funk.  I know that we all have to make sacrifices, with the hope that the future will be brighter. But, and I guess this is where my P.T.S.D. comes in to play; I’ll get scared that there won’t be a “next time.”  I’ve lost so much time, so many years, to being on my death bed sick that I get fearful when time passes me by that could have been filled with larger than life living.   People will often say, “well, none of us know when our time will come; I could get hit by a car tomorrow!”  Yes, that’s true.  But, let’s face; most people don’t have a clock ticking down at rapid speed, like those of us with severe chronic illness.  We live with our mortality every day.

This “Debbie Downer attitude” has kept me from blogging recently.  Yet, it feels cathartically healing to write this all out on page and share it with you.  And it has helped to refocus my intentions.  I may not be communing with the seals of Cape Cod right now, but I am communing with all of you.  And I am grateful to be fully alive, and fully present in this very moment.

Role Reversal~Another Challenging Adjustment


My husband and I have reversed roles; and I am still adjusting to this change even after 5 years.  I still see myself as the one who held our home together, juggling work and household obligations.  And doing it all with aplomb, I might add!  But when I truthfully look at “today,” I see that I am no longer capable of doing it all, being a 21st century women who has eight arms and three brains.   And I miss that old me; the one that everyone relied on, most of all, my husband.

Sometimes when I think back to the women I was (not so long ago), I feel like I am thinking of a character in a story.  I couldn’t possibly have been capable of so much, could I?  Yet, I was.

While living in Boston, I remember waking in the wee morning hours and getting dressed in the dark so as not to disturb my ever-sleeping husband.  Out the door, I would truck across lanes of traffic, deftly moving out of the way of on-coming cars (that feat alone amazes me; I can’t even imagine having to cross the street at anything faster than a limp, drag, stumble these days!).  Climbing a steep incline I would arrive at the transit stop to catch the cross town bus.  On the days I just missed it, I would merely shrug, hold tightly to my (heavily loaded!) briefcase, lunch sack and ever-present coffee mug and hoof it a couple miles to the B.U. bridge, crossing The Charles over to Cambridge where my office sat overlooking the serene waters.  And I wouldn’t even break a sweat! Arriving at the job I truly adored, Director of a large child care center (135 kids and 35 staff!) I would begin work at 7a.m. and continue non-stop through my days until, many times, 11 hours later.  I was constantly on the go; up and down the stairs, up and off the floor from playing with the children who made every day worth the effort, interacting with staff and parents, juggling financials and accounts, trainings, meetings, the list goes on and on. I excelled at my job and was often rewarded with company bonuses. This “excellence” came from a deep passion for my career.  The company I worked for emphasized the fact that “the buck stops with the director.”  And I loved this responsibility.  I adored working with young children and creating an environment where not only the children, but the staff would thrive and grow.

And my day didn’t stop when I locked up the doors for the night.  If I ended any later than 6:15 (which was often), I missed the last bus and would return home by foot, once again.  Then it would be a stop at the market where I would load up with groceries (how in the world did I lug bags laden with water and milk jugs along with all my work gear?!).  Arriving home, I would clean up, make dinner, do work projects as well as squeezing in social activities almost nightly… getting together with friends, playing pool in the league, going out to bars or to dinner, seeing live music.  How the heck did I do it all?!  Week-ends were equally filled, many times including spontaneous trips to hike the Appalachian Trail or overnights in a quaint New England town.  And everything was planned by and implemented by me.

For many years, my husband battled debilitating depression and I was the one-woman army that held our unit together.  Fast forward to today where the tables have completely turned.  Something I would never have predicted.  I watched my mother growing up hold our family together and having this seemingly unending supply of energy to complete a multitude of tasks (she’s still this way, working almost full-time at 67).  This was my inherited role, and for many years, I confidently filled it.

No doubt, there’s a part of me that wonders if this contributed to the development of my autoimmune illnesses.  It’s not uncommon to read reports stating that the common denominator in people who develop these types of chronic conditions (from Fibromyalgia to Multiple Sclerosis to Migraine Disease and Lupus and of course, Polychondritis) is: “women in their late 20’s to early 30’s that are Type-A personalities.”  Sound familiar?!

But I didn’t heed any warning call and slow down before it was too late.  I came to a screeching halt upon facing the train-wreck that is my current life.  God put the brakes on for me.  And just like suddenly coming upon an accident that you have to immediately react to, I had no transition period between being “the woman who can do it all” and “the woman who can barely do anything.”

For a couple years, our home fell into a state of complete disarray.  I was far too sick to even think about cleaning up my external environment when my internal landscape was rapidly being consumed by raging fires.  An apt analogy, because during those years, that was all either my husband or I could do, put out one fire after another, with no energy left to put towards clean-up efforts.  We relied on friends and family to help.  But, for the most part, we just ignored it as dirty dishes and un-paid bills piled up. (Did I mention I was also responsible for all our financial book-keeping, too?).

Then things changed.  As I got sicker, my husband got healthier.  And he started to step up to the plate and take responsibility for our home.  I have to admit, at first, it felt good. To be the one sitting back while he juggled all the tasks required in maintaining a home.  His eyes were opened to all the things I had been doing, mostly unrecognized, for over a decade.  And I soothed my anxious mind over doing nothing, by reminding myself that it was “his turn.”  Of course, that’s when I thought it was temporary!  I figured once I got better and more able-bodied, we would be able to divide the labors, both acting as equal participants.

But, at least so far, we’ve never reached that equilibrium.  Now, it is my husband who truly does it all.  And, oh, how I struggle with this!  Of course, I “look” able-bodied on the outside.  But even the simplest of tasks can throw me into a flare.  For example, I decide to try and cut and prep the veggies for dinner and I end up with cramped, swollen hands, shooting pains in my back, and deep fatigue.  And then I am disappointed when the cheering section doesn’t pop out of the closet, with a “Rah-rah! Sis-boom-bah! Hooray for Tamara. She’s the bomb!”  There is no one celebrating these minor accomplishments that I view as major achievements.  And now that Dave is “super hubbie,” our family and friends see our home clean and our bellies fed, and assume we are handling everything just fine.  But I know the strain this puts on one person.  All I want to do is talk my body into getting off this chair and going into action mode!  Alas, that is not the answer either.

So, I bring myself back to “just for today.”  Obviously, I don’t know what the future holds so there is no reason for me to try and figure it out.  Instead of focusing on all the ways in which I feel “lacking,” I am choosing to focus on all the ways my husband is excelling.  And this fills me with gratitude.  I am extremely blessed to have someone to care for me.  And that’s really the most important thing, after all, isn’t it?

Whoa! I’m WAY Off “Schedule!”

I always underestimate the time it will take me to complete a task. I’ll use the tricky formula of “time it should take me to complete in current state” – “time it used to take me in healthy state” + “time it takes the average person” = Project DoneYeah, right!  I forget to take that total and then multiply it times 3, 4, even 5, depending on my physical state, the weather, distractions, you get the picture! 

Yet, no matter how many times I plop down on the couch frustrated after a day of concentrated effort that has produced minimal results, I still hope for something different the next time.  And, that’s the key really; it’s not that I am ignorant to the current state of my physical (un)well-being.  It’s that I am always hopeful for the day when my body surpasses past abilities and surprises me with its wellness!  That’s not such bad thing, to have perpetual hope.  But, sometimes this “Pollyanna approach” gets me into trouble, because I end up physically depleted after pushing myself too hard, going beyond the limits of my chronically ill body.

But, today I want to stay in celebration mode!  Because even though what would have taken an able-bodied person ½ a day to complete has taken me 3 ½ days (rest breaks included, of course), I am feeling enormously proud of myself for seeing this particular project to completion.  What “project,” you ask?  I have finally gotten some of my art pieces and jewelry creations up on Etsy!  This is huge for me!  I decided to showcase my recent beach glass and stone creations.  You know, the ones I found when I followed my intuition (read HERE) and Mother Nature blessed us on that beautiful beach day? Not only do I think they contain all the energy and warmth of summer; the lake stones are stunning reminders of the glaciers that carved out this landscape, called Home.  I’ve also posted some of my art (as you can tell, Nature is my muse!).

After spending significant time in the creation process (not included in the 3 ½ day declaration!), I am exhausted and typically peeter out at this stage.  I’ll hold on to my cache until I have another sale.  But there are always those people who ask about a website for browsing and purchasing.  I will puff out my chest and say, “Why, yes, I do have such a webstore, through Etsy!  Here let me give me you a card. Just give me a week or two post-sale before you check it, okay?”  And the customer leaves clutching their card, awaiting this marvelous store that I have so openly boasted about.

I’m sure those of you struggling with chronic pain, illness, or even just good ol’ procrastination can relate to what typically happens next… A sale will physically drain me for weeks (another one of those “underestimation situations”).  By the time I’ve recovered, I feel chagrined that my verbally promised timeline has come and long gone.  I may try to start the process.  But somewhere along the way I lose steam.  Always thinking, “I’ll have more energy tomorrow.”  Famous last words!

Well, this time I did it differently…

  • I stopped myself before making any verbal promises.  Because once a promissory statement has left my lips, the pressure is on!  All that this (mostly internal) pressure creates is a crushing sense of shame; shame over my illness and inability to perform what are seemingly simple tasks.  I’m sure if my customers knew what a struggle this is for me physically they wouldn’t have any qualms about it.  But do I let them in? Nope.  Back to the “well, she looks okay on the outside.  So, she must be okay, right?”
  • I gave myself plenty of breathing room and recovery time before even trying to attempt re-creating my Etsy site.  And I chose to tackle this project on week I did not have a lot of other obligations (I.E.: doctor’s appointments!).
  • I was gentle with myself when it took longer than expected.  I took rest breaks in between each step and broke it up over days.  This was the luxury I gained by not putting myself under a deadline!

I was reminded how much goes into selling items online.  I am in awe of those who do it on a consistent basis, especially those I’ve come to meet through WordPress whom blog and create and sell. Miraculous!

The creation process alone is taxing, but it is also extremely rewarding.  It is meditative and takes my mind off the pain.  The rest of it is just a pain in the butt: taking several photos of each item (including setting up creative, attractive backdrops, lighting, etc.); editing each image; uploading them to the site and then making necessary adjustments (sometimes back to re-photo); completing an inventory form for each item separately; then it’s on to writing an appealing description; pricing; posting; oh, and, of course, advertising so that your customers know to go look!  There are parts of the process I enjoy but it all gets tedious after a while. And it’s crazy the ways my body will find to revolt against the project!  From a stiff sore back after a photo session to swollen, sausage fingers from typing too much, I make sure to have a constant rotation of ice packs in the freezer!

But the bottom line is…  I am excited and proud of my accomplishment!  My “stick-to-itness” even in the face of multiple physical hurdles! I am holding happiness in this moment.  Because my mind wants to go to all the items I have yet to post, and I keep bringing it back to the here and now.  In the here and now, I have a finished product to show and share.  And that’s something to smile about!

(NOTE: The above picture collages highlight some of the items for sale.  Interested in seeing more? Click HERE.)

Paying a Steep Price of Admission for a Little Fun


Well, I decided to go to the movies with a girlfriend yesterday, and, boy, did I pay a steep price of admission!  And I’m not just talking about the $10.50 at the door.  It was one of those nights where my body set up revolt against me as soon as I returned home.  I know, I know! The nerve I had engaging in an activity where I sat for 2 hours.  How the heck did that “strain” weaken my body? 

But, it did. I just never know what is going to trigger an avalanche of unpleasant symptoms.  It’s the enigma of my disease. And, I like puzzles, don’t get me wrong; I’m just reaching my limit on how many more twists and turns I can handle from my own body.  This time, it just didn’t respond well (big understatement!) to being still and stiffened for a prolonged period.   But most likely it was a culmination of all the stress and strain I have endured over the last two weeks; all those tiny little fissures in my carefully balanced everyday existence. 

So, last night, I come home from watching The Heat, still chuckling at the crazy antics of Melissa McCarthy.  I was feeling positive that I nurtured my mental health with a little laughter therapy with a friend.  But as soon as I settled on to the couch, I could feel “The Change” coming on.   It sounds like I am The Hulk, but in some ways that’s exactly how I feel!  My body loves to play Jekyll and Hyde on me, and I never know when this painful transition will occur.

It starts with a deep fatigue settling into every fiber of my being and I begin to feel separated from my conscious mind.  Then the nerve sensations strike up their marching band… this last development being the worst.  “Nerve sensations, what’s that?” you may wonder.  It’s the hardest to explain, but I’ll give it a go: imagine feeling like you’ve just been plugged into a socket and electrical impulses are shooting up and down your arms, and even worse, up and down your spine.  Then the “creepy-crawlies” start, like minute bugs crawling beneath your skin.  Your skin stops being able to regulate its own body temperature and you fluctuate between feeling hot and clammy and cold and goose-bumpy. You may experience the sensation of “walking on hot coals” and/or numbness and tingling in your extremities and down your arms. Your joints become stiff, your balance is off, and you lose all depth perception.  Sometimes a little vertigo is thrown in the mix for good measure- yeah! Then something called “hypergelsia” kicks in.  This literally means: “Hyper-Sensitivity.”  The skin on your body reacts to the slightest touch as if you are being burned or stabbed… think of something extremely unpleasant!  This “touch” can come from another person, but it can also come from the whisper of a breeze on your skin, or even worse, just the touch of the couch beneath your body. 

Last night, my body was in the throes of all of the above!  The only thing I gratefully escaped was the vertigo, but I had a killer headache in its place.  It is so difficult to explain to someone else what this is like.  As you can tell from my description, it’s all very abstract… “Plugged into an electrical socket?  The feel of a blanket, hurting you?!  All sounds pretty wacky to me!” But, I hope you can suspend belief for a short bit, and try to just get a glimmer of an idea about how this must feel for many of us with autoimmune disease (like mine, Relapsing Polychondritis), chronic fatigue, fibromyalgia, migraine disease, Lyme disease, etc… These are not just the “silent diseases” they are also ones that just at the beginning of last century would be labeled “hysteria.”  And you can see why… it sounds like I am hysterical.

But, what is actually happening is that my body was exposed to too many stimuli and it is attacking itself.  It no longer has the natural defenses to process multiple stimuli, stress, environmental toxins, bacteria and viruses.  It sees everything as the enemy.  And when my body feels attacked, it attacks back.  Unfortunately, somewhere along the journey, it lost the ability to distinguish between harmful elements that need attacking (from the flu to cancer) and those things that are naturally occurring substances that are vital to my body’s health.  It now attacks anything and everything.  The things most often in its path?:  my own body, cells, nervous system, bones, cartilage, internal organs, etc.

For me personally, this attack can look like anything from my colon perforating, to having a heart attack, to my kidneys failing, to full body rashes, to histamine reactions (like I’ve been exposed to an allergen), to destruction of my cartilage, to degenerative spine, to full body hyper-sensitivity.  And, surprisingly, the most difficult thing on that list is the last one.  Because doctors, for the most part, know how to treat the “bigger,” more concrete reactions.  But how to treat a crazy list of symptoms like the ones above?!  Therein lays the mystery.

So, that brings me to last night where I was writhing on the couch like a drowning worm.  Struggling to find a comfortable position; changing my positions as often as one madly clicks through a hundred channels on the T.V.  I was groaning and crying.  Whining to the Universe, “I just can’t take this anymore!”  Absolutely nothing helped… not even “knock you out doses” of valium!

And my husband sat helpless to help and I sat helpless to ask for help.  He kept saying, “What’s going on?” and “What can I do?”  With each repeated question, his anxiety levels rose and his voice became more and more agitated.  And I felt increasingly powerless in how to explain what was going on.  I know his frustration wasn’t at me but at my illness and his inability to find a “solution.”  But the only answer to “fix me” was TIME.   I just had to wait out the storm.  And in the meantime, having him rub my spasming spine and hold my hand until I fell it to a fitful sleep was the best medicine.  To know I wasn’t going through this completely alone.

And I made it through the night!  Which makes me want to cry in relief.  I still feel almost hung over and like my body was in a car accident.  But I’m able to sit here and type, so I must be doing better.  Now the tricky part is taking care of me over the next couple days so that my body can heal.  And does this mean that next time I’ll skip the movies?  No way.  Because unfortunately the trigger to these episodes is always different.  But, I guess that’s a gift in some strange way. Because I can’t predict what will set me off, I also won’t keep myself from truly interacting in life because I am in fear of the “what if.” This doesn’t mean that what happened last night doesn’t scare the bejeezus out of me.  It does!  It just means I’m not going to let that fear rule my life.

I am going to keep on living today, no matter the consequences!

Struggling to define “My Purpose”

“It is for us to make the effort.

The result is always in God’s hands.”

{Mahatma Gandhi}

What is my purpose in life?  How am I making a meaningful impact on the world?  What role do I play in making society a better place?

These are just a few of the questions I’ve wrestled with since become so ill that I had to stop working almost 7 years ago.  Even just writing down that number takes my breath away! 7 years. Wow. What happened to “my life” I wonder?

My first job, at 13, was a summer assistant in a school-age child care program, and it was the beginning of what was to become my career.  I loved children.  I love children (I just can no longer work with them). I climbed the “child care ladder” quickly, my passion and enthusiasm for my career shining in my every action.  I was promoted from lead teacher to toddler coordinator to assistant director to director; all before the age of 30.  I was 27 years old and the Director of a large center (135 children, 35 staff) looking over the Charles River in Boston, MA and I thought I could see the map of my whole future in front of me.

Before the final edict to stop working full time was given, I was a Staff Training and Development Specialist for two centers.  I was in my element; the hospital I worked for had created this position just for me; there was nothing more satisfying.

And then the “march of the dreaded symptoms” began their invasive take-over of my body. Da. Dum. Dum. It began with the incessant fatigue, migraines, myalgias, infections, and arthralgias we’ve all come to “love and loathe.”  When the arthritis took hold of my knees, my rheumatologist gave the medical orders that I could no longer “bend, stoop, kneel, lift, crawl, …” What? What?! That was my whole job!  How was I supposed to train teachers?  From up on high?  I was a hands-on (or I should say, knees-on), example driven teacher.  But, I persevered. I thought, there must be some way to make this work. But, I was told, no.  Kindly, but, “no” just the same.


I didn’t have much time to think on my dilemma, when I was hit with my colon perforation (rupture) and the subsequent 3 years in and out of hospitals, truly fighting just to survive.  I didn’t question my “purpose” during this time because I knew, instinctively, that it was to be a living example of hope.  I saw the difference my interactions and words could make.  I was so focused on making it through the next day (alive) that I wasn’t overly concerned about where my future would take me.

But, then, somewhere along the years, I lost this trust: this trust that whatever I was doing was what I was meant to be doing in that moment, in that day.

I started to question myself and my place in the world.  I felt like I was more of a drain on life than a source of life.  My disease required me, and still requires me, to feel dependent on a lot of people.  It’s hard to feel purposeful when you feel like you have no independence.

I started to create my art, which was personally fulfilling.  But, again I struggled with how this activity translated into being a contributing member of society. When I was working with young children, nurturing their development, supporting their individuality and providing support and resources to the caregivers in their lives, the answer was clear.  To me, there was no better way to be “of purpose” than to facilitate the healthy growth of our future; children.

But here I was, healthy enough to be “hospital free” but not healthy enough to manage gainful employment.  And I had somehow equated gainful employment with having a positive impact on the world, living a meaningful life.

And that’s where I was wrong.  Once I could separate myself from the “person I thought I was going to be” from “the person I am today,” I could see that my roles have changed, not my purpose.

I am still intrinsically motivated to make a difference in other people’s lives.  I’m just still in the process of defining what that means for me.  And, most likely, will re-define that meaning each day anew.  Just as my body is a constantly changing landscape of symptoms, strengths, and weaknesses, I, too, have to regularly evolve.

So, what does my purpose look like today?  What is my defining life philosophy?

  • I know that to make a difference with just one person is to make a difference with many:  for example, by sharing my experiences in this blog, I am exponentially reaching out to the world.  If I can impact just one person, with one word, I’ve made a difference for that day!  My friend, so neatly said to me the other day, “just imagine, someone in China reads your blog and shares something that impacted her at the dinner table.  A week later, her cousin shares with a friend, ‘I heard this really cool thing the other day at a family dinner.’ And then that person shares it with her mother, and on, and on.”  Each one of us “bloggers” is making that difference!
  •  Which leads me to… the best way to make a difference is to be “faceless.”  I don’t have to be front and center anymore, the lead director of a company.  I am perfectly comfortable being the “silent partner” whose thoughts and spirit of HOPE are passed on, with no mention of the source. We are all The Source!
  • My artistic creations aren’t frivolous.  Every piece I create, from a necklace to a painting, has a piece of my loving energy in it.  And if that creation resonates with someone else’s soul and they choose it to grace their necks or the walls of their home, then I am already passing on my energy.  I am bringing beauty into people’s lives.  What could be “un-purposeful” about that?!
  • I don’t have to define what my purpose is going to be on a given day.  I just have to be open to listening to the intuitive messenger already inside me.  My personal goal for a day may be to nurture myself so I can be there for someone else the next day.  Or it may be to pick up the phone when a friend in need calls or even to answer the “calling” to reach out to a unknown cashier that is need of some sort of personal recognition on that day.  Just listen… the answer is already inside your soul.

Today, my life is filled with PURPOSE.  It may be unconventional, but it’s no less meaningful.  No matter where you are on the scale of physical and mental capabilities today, you, too, serve a one-of-a-kind purpose to the world.  Your mere existence is a gift. Try not to lose sight of that!

Today, I just have to make the effort… the results are up to a power greater than me!