Archive | August 2013

Searching (in vain) For the Magic “Fix-It” Button

affirmation1741At some point, during the path of chronic illness, both with mental and physical conditions, we “sufferers” hope for a magical cure.  At first, it’s the search for the correct diagnosis. “If they can figure out what I have, then they can figure out how to fix it, right?”  The average time from onset of symptoms to diagnosis for a patient with an autoimmune illness is 12 months- 5 years.  That’s a long time to hope!  And that’s just Stage One.  There is temporary relief at this point; a validation for the myriad of seemingly disjointed symptoms that have displayed themselves over the years.  I remember thinking, “finally! Someone is listening.”   But with the complexity of autoimmune disease and chronic conditions comes the challenge of finding the right combination of treatment modalities to match the exact manifestation of the disease in your particular body.

Stage Two begins once the diagnosis is in place and the march of treatments commences; this one doesn’t work, this one mildly helps, oh, found one that works for these symptoms, but not those… There comes a point when many doctors say, “I don’t know what else I can do for you.”  God, this used to be so frustrating!  Until I realized that the medical professionals feel just as frustrated at not being able to fix me as I do at not being able to be fixed.  At this period of time, I picture facing a crossroads between Stage Two and Stage Three.  Many patients turn around at this point, and “re-do” Stage Two, perhaps with second, third, even fourth opinions; with extensive self-research; by participating in research studies; or by going to additional specialists for additional tests.  There are many ways to travel the roads of Stage Two over and over again.  I know I sure did.  I felt I had to exhaustively map out this terrain; perhaps there was a secret curative tonic hidden somewhere?  But, getting your hopes up over and over again about some new treatment or new doctor, only to have them dashed again, is extremely taxing, physically, mentally and spiritually.

Over the last few years I’ve started to move forward, onto Stage Three.  Stage Three is the most challenging stage; many sufferers may never reach this stage.  This is the stage of acceptance that there is no magic cure; no perfect “fix-me” button.  It doesn’t mean I don’t keep my ear to ground, listening for new and innovative treatment options for my conditions.  But I also don’t put all my eggs in one basket anymore.  I know that I will always be in some level of pain.  The truth is that my disease steadily progressed for the 5 years before it was diagnosed and treated, and that damage is irreversible.  This is where acceptance comes in (once again!).  By accepting these facts, I can focus my energies on managing my symptoms (rather than “curing” them), finding different ways to adjust my activities as to not exacerbate these same symptoms and developing coping skills to deal with them on a daily basis.

Last week, I had an endocrine consult for the first time.  I explained to the doctor that I was well aware there is no curative tonic that he will miraculously discover in which to heal me.  I just want to be thorough with my care, and if there is something awry that could explain some of my “excessive” symptoms (like this debilitating fatigue and waterfall sweating armpits!), it would be a relief to treat those concerns alone. He sat back and said, “You have a really grounded, realistic perspective on your disease.  The majority of my patients come in here pleading for me to ‘fix’ them and become very agitated when I can’t.  You have reached an extremely healthy level of acceptance and your attitude will serve you well in managing your disease.”  These words were the healing tonic I craved.  To be heard, to be acknowledged.  He was adamant about the validity of my concerns, but was also honest about the (in)ability of modern medicine to treat them. 

No one is questioning that I have life altering symptoms.  But, there is only so much modern medicine can do to treat them (another solid reason to advocate for studies on women with chronic conditions!). The truth is that if I lived 40 years ago with Relapsing Polychondritis, I would have been diagnosed postmortem.  Without the treatments available that keep me alive today, RP was diagnosed after one’s trachea had collapsed or the patient went suddenly blind or deaf.  Even though I live a life of daily pain, how can I not have gratitude for the fact that I am alive to live it?!

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“I Have Arrived. I Am Home.”

white lotus by Tamara P.These three simple words have changed my life dramatically.  I first came across this straightforward mantra: “I have arrived” in a novel by Paulo Coelho.  In this compelling text, he discusses using it daily as a reminder that each of us, in each moment of our day, is exactly where we belong.  “Let go of the idea that the path will lead you to the goal. The truth is that with each step we take, we arrive. Repeat that to yourself every morning: ‘I’ve arrived.’” (The Witch of Portobello).  I followed this suggestion and now use it as a tool at the end of my morning prayers-reflection-meditation.  I pause, take a deep breath, open up my arms to the world, palms up and say, “I’ve Arrived!”  I say it with gusto.  I say it with conviction.

I didn’t begin this practice feeling overly confident about these three words.  Could they really make that much of a difference?  But, at the same time, I realized that it couldn’t harm anything by trying.  Now, after some 40 odd days of this daily practice, I can see that it has clearly made a difference.  It is a not so subtle reminder that my only “job” is to be fully present in each moment.  We’ve all heard this before, in one form or another.  But it’s an abstract concept, one that’s difficult to grasp in the rush of everyday living.  They are words that can easily be said, but are not often truly felt.  I have now crossed this barrier and in doing so, have developed a deep desire to share this technique with others.  I encourage you to try it, even if you feel silly or cynical.  What do you have to lose by giving it a go?

The concept behind the mantra “I’ve arrived” is a deceptively simple one.  By stating these words, you bring yourself, mind, body and spirit back to the present.  It’s almost impossible not to.  In the beginning, it may only be for that one moment after the words leave your lips.  But after repetition, those moments become minutes and then hours, until this thought fills your days.  I now find myself walking through life with an inner smile; I feel like I have my own little secret.   And when I find my mind drifting into the future (which it naturally will do) I remind myself to repeat the mantra, “I have arrived.”  I think there is a key in repetition; in not changing the words or the format, always repeating the same mantra until it becomes your own calling card.

As I was sharing my “revelation” with a friend, she said she was familiar with this practice, but from a different source: Thich Nhat Hanh.  I researched this and discovered he takes this process a little deeper and incorporates it into the daily activity of walking.  He speaks of walking meditation as a way to connect body and soul with the here and now. Through intentional, mindful walking, “We generate peace within our body, our consciousness. We embrace and heal the pain, the sorrow, the fear in us, and that is the ground for helping peace to be a reality in the world.”  He takes two natural processes; walking and breathing and adds a third element, the mindful mantra.  His suggestion is to measure your breaths to your gait, pacing as such; breathe in, take three steps; breathe out, take three steps.   As you get the rhythm going, add these two mantras:  on the inhale: “I… Have… Arrived.”  And on exhale:  “I… Am… Home.”  But what does this all mean you may be wondering.  By saying “I’ve arrived,” you are reminding yourself that you have arrived in the here and now, the only time where life is fully available to you, which is you one true home.  I like to think of it as bring my soul home.  And whenever I think of the word “home”, I think of solace, peace, comfort, and love.  This is the gift you are giving yourself.

This practice, in just over one month, has helped me with my fears and anxiety with my physical pain and mental burdens.  If I have already arrived, then I have nothing to worry about!  The future doesn’t matter, as long as with each step, or each breath I take on this earth, I arrive.  I am naturally going in the direction I am meant to be.  I am keeping my focus and attention ”where my feet are.”  And my feet are always right there, in my present space and time.   The Buddha said, “the past is already gone and the future is not yet here.”  Thich Nhat Hanh likes to remind us that we have an appointment to keep with our life and that appointment takes place in the present.  When we separate ourselves from the present, by either dwelling in the past or projecting into the future, we create a space (a chasm, really) between ourselves and the here and now.  This “space” fills up with fear, pain, anger, grieving, and despair.  But when we bring ourselves back, to live fully in the now, we fill up that space with peace.

“I have arrived.  I am home.”

As these words become practice, you may want to add more lines to the mantra, just one line at a time.   There is no hurry.  We’ve all spent many years far away from “home,” now that you’ve arrived and come back to your Soul Home, there is no rush.  Time is endless.

I have arrived. I am home.
In the here. In the now.
I am solid. I am free.
In the ultimate I dwell.”
~Thich Nhat Hanh

Staying Angry at My Chronic Illness: I’m the One Who Gets Burned

buddha-quotes-sayings-quote-deep-anger-wisdom Am I angry at my illness?  This was a question recently posed by a friend who remarked, “I know I would if I were you.”  And it’s given me pause.  I certainly have been angry at my illness in the past, or more accurately, at the doctors who ineptly handled my illness resulting in near-death effects.  Holding on to the resentment aimed at these negligent doctors gave me a false sense of power in a situation where I was entirely powerless.  If I could focus my energy on them; I wouldn’t have to face the reality of my physical unwell-being.

When I sit quietly with this question today, I stay deeply aware of all the emotional currents running beneath the surface.   And none of them resonate with anger; not any more.  Is that even possible?, I wonder.  Yet, it is.  Time heals; if you let it.  Somewhere during my medical journey, I realized the only one I was hurting by holding onto this red hot coal of anger was me.  I waited years to lob that coal at the ones I resented.  In the end I was left standing with the hot coal in my hand; the only one burned by this “righteous fury.”  I got tired of burning myself.  I finally had the insight to see that by holding onto this on-going anger, I thought I was giving myself back power.  But in truth, I was giving these doctors the power, by constantly bringing their negative energy into my life over and over again.

Anger and resentments are tricky things.  Many of us are afraid to let go of anger, because then it will signify that the other side has “won.”  That you are giving in.  But, it’s the exact opposite.  Just because you forgive, doesn’t mean you forget.  We often associate the word “forgive” with excusing someone for their behavior or mistake.  And this can be true.  But, in this circumstance, forgive falls under the alternate definition: “to stop being angry about or resenting somebody or somebody’s behavior” (Encarta Dictionary).  That’s all.  I decided to stop being angry; to put down the hot coal and start living my own life again.  I have not forgotten what the doctors did; I could never forget that.  But, by forgiving, this experience became an extremely unpleasant memory.  It taught me how not to act in the future.  In this case, I no longer implicitly trust doctors just because they have a medical degree on the wall.  If they are not responding to the needs of my body, I go elsewhere.  Because that’s the key, it is my body.  Therefore I am the only one truly qualified to know when something is awry with it.  In this case, by processing my anger into forgiveness, I’ve gained valuable tools in which to address my physical needs.  If I was putting all my energy and effort into hating these people, I would miss the experiences that are happening in the now.love-quotes-026

Holding onto to anger is living in the past.  I have already lost chunks of my life to illness, I am not about to sacrifice anymore by reliving the resentment I feel at my physical condition.  That’s not to say I don’t get frustrated with my body and its limitations (see yesterday’s post as a fine example of this!).  I just choose to fully embrace these feelings when they come, validate myself, share them with others, and then let them go.  For me, dwelling in a place of anger only creates a septic environment filled with fear.

So what is the opposite of living a life of anger?  It’s living a life of acceptance.  Again, acceptance doesn’t mean that I have to feel joyful about my situation, it just means that I have come to terms with life’s circumstances; it’s “the realization of a fact or truth and the process of coming to terms with it” (Encarta Dictionary).  The truth is I have a chronic illness; actually several chronic illness.  They are all autoimmune in nature; my body has decided that my organs, cells, blood vessels, bones, and connective tissues are the enemy and will attack them at no cost.  Those are the facts.  It is also my truth that my disease cannot “attack” my spirit unless I let it.  I choose to accept the facts of my situation and to live in what I know to be true.  Holding onto to anger at my body only creates another invasive disease.  It makes me stay stuck in the past, in the “what if’s” and “if onlys.”  If only my life had turned out differently.  Well, it didn’t.  So instead of constantly fuming over my situation and asking (wailing), “Why me?!,”  I’ve decided to bury my anger, plant a garden of acceptance, love and hope and face each day with “What’s next.”  These are my circumstances; it’s up to me what I do with them!

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It’s Summer; Time to Pull Out the Sneakers! What?!

feet-on-beachSo, it’s often said that “Summer is Sandal Season!”  Well, I got the great news that for me, this “Summer is Sneaker Season!” Yeah.  The day before I left for vacation, I had an urgent appointment to see a podiatrist.  I had been experiencing pain in my left heel, at times, so severe that I couldn’t put any weight on it. Obviously concerned, I was grateful to get a last minute office visit. After I heard the diagnosis and treatment plan, let’s just say, I was less than enthusiastic.

It’s hard when you live a life of “restrictions” to find out that there is but one more area of my life I now need to adjust to meet the “needs” of my chronic illness. When the weather warms, the first thing I anticipate is pulling out my beloved sandals and all the colorful nail polishes that come with the season! It’s truly one of my last indulgences.  There are so many modifications I have to make to my daily living, and showing off my sexy feet (the one area that doesn’t puff up with Prednisone weight!) is a luxury I just don’t feel like giving up!

I know I am acting like a toddler throwing a tantrum over imposed rules.  But, I don’t care!  I take so many things with a smile on my face, my chin held high, my thoughts focused on the positive rather than the negative.  I didn’t fight the podiatrist when he delivered the news that I had torn my posterior tibilial tendon and told I needed to immobilize my foot for 6 weeks or I was at risk of a ruptured tendon (all said with a wagging finger. Tsk. Tsk.).  He proceeded to tell me that the typical treatment would be a “boot” (those big, clunky walking casts that go from toe to knee).  Thankfully (?) he said my back would hate him for this (I have had two lower discectomies for ruptured discs) so it eliminated this option.  The only alternative is to wear solid, athletic sneakers at all times. So I tried, I really tried, to look at the positive; sneakers were a heck of a lot better than a boot, right?  But, at the same time, all I could hear was this mocking voice inside my head, “Well, won’t you look hot on the beach with your bathing suit and sneakers!”

I have been the “good patient” and tried to follow the treatment plan (which also includes daily exercises, massage and ice) to the best of my ability.  It’s been well over a week now and even on vacation, I wore my sneakers most of the time.  But I have always hated having my feet confined.  So when I need to “free my tootsies,” I don the prescribed orthopedic flip flops, a much more promising option. Alas, I was told they were only for getting out of bed; they would be my “next summer’s shoe” (more finger wagging. Tsk. Tsk. Tsk.).

But, here’s the kicker.  My body does not like change!! Any change.  A change of footwear has been a huge trigger for a cascade of symptoms.  Following orders, I shove my feet into the only sneakers I own, heavy hiker sneaks, and my body rebels.  For me, the weight of just a couple extra pounds dragging me down is enough to trigger a flare. More parts of my feet than I knew existed hurt, my feet and ankles keep swelling into nondescript shapes, and it has thrown my whole lower body out of whack; knees, hips, back…

And the number one feature of my autoimmune disease, Polychondritis, is the attack of connective tissue.  Hazzah!  Tendons are connective tissue.  Just like this disease has marched its deadly forces through every inch of my body, it has now reached my feet!  Also, the tendon I injured is a whopper.  It runs from just under my heel, around the inside of my ankle, up to my Achilles.  And by tearing this, it has inflamed my plantar fasciitis (ligament) as well as my Achilles Tendon.  I certainly don’t want to risk rupturing any of those (I keep envisioning athletes suddenly crumpling to the ground. Ugh.). This one tiny, torn tendon has caused a ripple effect, inflaming all the tendons and ligaments in my feet.

Today I am struggling mostly with finding a happy medium.   A way to heal my heel (hardy-har. har.) while also soothing the rest of my joints and tissue.  Right now, I am in way worse pain than when I walked into the doctor’s office.  And that’s not a good solution for any of the things that ail me.

But, just being able to “say” these feelings out loud is a relief.  I have to trust that the rest will come with time and patience.

In and of itself, I realize that communicating my disappointments, my worries, my fears, is healing therapy.  Because holding all that in behind the mask of a smile only adds stress to an already stressful situation.  What are you holding in today that could be shared? Whatever trials you are facing, free yourself from the cage of stoicism.   I guarantee you will find relief in the comfort of shared pain… we don’t have to face life’s ups and downs alone! 

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.”
{Lao-Tzu}

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!

Battling The Post-Vacation Blues (and a few odd bruises too!)

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Why does the first day after returning from vacation hit like a ton of bricks?  All the physical reserves of energy and stamina I greedily tapped into are now depleted and I feel every ounce of my chronic pain rearing its ugly head at me; mocking me with an “I told you so.”  I’m now walking around like a bleary eyed, stiffed limbed tin-woman, marveling at the marked change between how I felt just yesterday with today.   Parts of me I didn’t even know could experience pain do so anyway, like the tip of my tongue. How crazy is that?

Not to mention the emotional let-down that occurs following such a satisfying event.  Mid-way through vacation, I find myself cheerfully commenting to my hubby, “Why, we still have half of our vacation left! It’s already felt so long and satisfying. I can’t imagine wanting more!”  Ha! Famous last words.  Then the second half goes by twice as fast as the first and by the time we’ve reached our final day at hyper-speed, I am digging in my claws; determined to hold on to the fading remnants of this break from reality.  We even start the “bargaining process”: “Well, maybe we can rearrange things so that we can stay just one… more… day.”  But, let’s face it, one more day is never enough!

There is just no way of avoiding the dreaded Post-Vacation Blues!

There is something magical that can happen on a vacation.  It truly can be a break from reality for me; the reality of my illness, my pain, my lack of abilities, . . .  I’m not saying I feel no pain on vacation, it’s more like I can take that pain and put it in a little satchel I carry with me.  It’s always there, but I’m no longer wearing it like a cloak.  This was one of those blessed times.  We spent a week at the place I reverently call my “Sacred Space.” It’s a family cottage that we have spent many a time at over the last 21 years and it is the place I let my soul travel to during meditations.  So it’s not surprising that it acts like a healing tonic to cure that which ails me! This phenomenon hasn’t always happened to me, but when it does I want to fight tooth and nail to keep it going.  But, alas, even fairy tales have to end at some point.

So why can’t I just feel satisfied with this gift I received?   There have been (many) times I have not been able to fully enjoy a vacation: either feeling too sick or in pain to fully engage in it or, even more distressing, being rushed to some remote hospital for an emergency situation. We used to joke that most people research “points of interest” before going to an unknown vacation locale, while we would research hospital and urgent care locations.  Humor is sometimes the best defense, right?  Then there have been those times I wish I could erase from our history.  Times trips were planned and had to be cancelled because the doctors told me it was too risky for me to travel.  This includes a trip to the Riviera Maya in Mexico to renew our vows on our 7th wedding anniversary.

Put in this context, I am willing to sacrifice days after my vacation for the days of respite and renewal I experienced while on vacation.  And although I did “over-do it” (hard not to with physical limitations such as mine!), I did make conscious choices to keep my activities within my reach.  Most of our days were spent sitting water side, drinking in the sun’s Vitamin D, reading, painting, playing games and musical instruments.  It’s a little depressing to think that these mild activities wiped me out.  That today, in reaction to a week of this, I am swollen, stiff and sore!  Not to mention the strange bruises that have bloomed across my body! But the fact that I sustained daily activities for 7 days is truly a miracle.

And the biggest blessing of all?  This time, on our 14th wedding anniversary, we did renew our vows (a promise we made to each other when we married on the date of our 7th year dating anniversary… to recommit our love to each other every 7 years thereafter).  It wasn’t barefoot on a beach in an exotic locale.  But in its quiet way, it was more intimate and allowed us to freely share our love that has come and is yet to be.  We sat by the Great Lake Ontario, which in this location looks as mighty as any ocean, and read all parts of the ceremony we wrote together.  We were in awe of the words we had chosen then, so many prophetic of the challenging times that were yet to come.  I was able to express to my husband how truly grateful I am for his support, love and encouragement in difficult times and in joyous times.  I thanked him for always choosing to run towards me instead of away.  All of this was exchanged, outside, our bare feet on Mother Earth with the sounds of the waves and steel drums in the back ground (a recording of the steel drum band we had perform at our wedding- the best gift we every gave to ourselves).

It’s no wonder I never wanted this vacation to end!  There is a re-connection that happens in times like these that rarely happens in the daily hustle of life; a reconnection to each other, to our own selves and to nature.  I got in touch with my intuitive voice, heard loud and clear without the interruptions of traffic, obligations, ringing phones (another unique gift: no internet or cell service to be found!).  It’s a rare treat to be cut off from the outside world for a week.  To have a break from the incessant worries chronic illness brings. So what if I’m having trouble walking today!  I have a lot to show for this “price of admission.”  (read HERE).  And, going forward, I plan on trying to weave threads of vacation-ease into my daily living.

Role Reversal~Another Challenging Adjustment

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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?