Tag Archive | Family

To: Chronically Ill at Christmas Love: Peace

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As the holiday week began in earnest last night (for both Christmas and Hannukah), I send extra love to my friends with chronic illness. As one friend recently reminded me, constantly fighting this sh*t is HARD!

Which made me think… at least 15% of society does not get any holiday time-off. Yet friends and family, and lets face it, ourselves, have pretty high expectations of our energy and ability to engage in all the same activities we used to do, pre-illness.

Living with chronic illness is a FULL TIME JOB. No holidays “off,” no vacation or calling in a “me-day” on accumulated sick days, no summer vacation, no breaks for our birthdays.

I certainly don’t mean to be morbid! I am just standing in solidarity with my chronically ill brothers and sisters. Because we still try to put on our Santa hats and reindeer bells and look festive on the outside while we feel awful inside. Our hearts want to receive each and every hug, but our bodies pray for not another pain-full squeeze.

For me, my body tenses up. Its almost like an unnecessary fight or flight reaction. So that I many times don’t feel the overwhelming fatigue and pain until I sit down at home post and my body desperately goes into spasm.

So please remember this holiday:

We may need to be selective about how many events we go to in order to conserve and stretch out our energy reserves (our “spoons”).

* We may skip the more crowded events in exchange for more intimate gatherings. Large groups can by over-stimulating and overwhelming and very fatiguing.

* Our schedules may seem unconventional. This year for example, I did church on Christmas Eve with my family, and then we’re not exchanging presents until the 28th. My husband and I cap off the holiday week with celebrating Our Christmas on New Year’s Eve and Day. Its not like I can go out on the town to ring in the New Year anymore!

* The hardest limitation I’ve had to enforce, is cutting out friend activities: Friendsgiving, White Elephant and Secret Santa, Cookie Exchanges, … In exchange for being able to participate in family celebrations.

It has taken me many, many years to come to this balance. And I still struggle with missing out, and even worse, disappointing those I love.

Family and friends can be so incredibly understanding and supportive. As long as I explain the place I am coming from. And the very few that don’t, aren’t worth any of your energy.

Am I miffed at my illness. Hell, yeah! It’s a freakin’ 24/7 job. I can’t take my body off, like a scuba suit, and set it in the corner for even a 5 min. break!

Do I feel melancholy? You bet! I miss walking through cities and malls to look at the holiday displays with Christmas music floating all around me; joining the local town Christmas strolls and tree lightings.

BUT I REFUSE TO LET MY DISEASE TAKE ANY MORE OF MY LIFE! I love Christmas! So I’m not going to compare what I can or cannot do. I am going to appreaciate the beauty of every moment I AM well enough to experience. No matter how small. We have been given one special gift through illness, to recoginize hidden hope and miracles that others miss.

So to my over 15% of FaceBook friends (that I know of) with daily chronic illness, you are not alone! We celebrate  together!!

And to our friends and family, thank you for you understanding, your patience (especially when we’re running late or cancel last minute), for your gentle hugs, and comfiest chairs. We feel grateful for every moment we get to spend with you!

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Lighting the Unknown Path

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As I have said before, it is the “unknown” that is always more difficult than the knowing. The waiting. The wondering. The wandering… of the mind as it tries to grasp on to something concrete.

My last several months have been spent in this suspended state. First we found out that our home of 15 years was suddenly being sold and we had to, in weeks time, find a (hard sought after one story) home, apply for a mortgage (which had become a Big Scary Monster in our heads), sort and pack through years of our life and family “heirlooms,” find the means to buy (and fix up) said house, move and settle, the list goes on.

The only way I survived this process was JUST doing the next right thing.  Nothing more. My husband’s anxiety would reach new and alarming heights and I would have to remind us both, “okay, let’s take a breath. Now, forget ‘The List; ‘ what’s Just ONE Thing we can do in this moment?”

And you know what? One (baby!) step at a time, we walked our way right through the scary terrain of the unknown and into our brand new home.

These are the lessons and skills I so desperately need to remember to apply to my life now.

Because just when I thought I was leaving the path zig zagging through The Woods of Uncertainty, I fell into a Bog of Burdensome Worries! (Didn’t mean to go all Tolkien on you!).

I’ve known since fall that my body was heading into unknown territory again. It’s both a blessing and a curse that I am so in tune with my physical being after years of severe illness and trauma, that I can tell as soon as I start to go off-kilter.

This time, I knew somehing major was brewing.

So, instead of going to the doctors with these worries  (although I didn’t sugar coat my concerns at my appointments either), I turned to internal pep talks, such as: ” Hey, dear body of mine, I know you are giving me warning signs that you’re failing in new and different ways, but could you just please hold on until March? And then I promise I will attend to all of your needs with the upmost of care!”

That wasn’t too much to ask, was it? Guess it was!

Because my “gift” for Christmas Eve was to wake up without the use of both my legs. Totally and completely, from the hips down (yep, includes the bladder, too!). What fun!! For two days, I could  not walk and afterwards, I had complete numbness, like my legs had fallen asleep and could not be stomped, shakened or rubbed “awake.”

Yet, did I go to the hospital? Nah! I had a host of “good” excuses… “It’s the holiday; it’s a weekend” and the creme de la creme: ” I just don’t have time for this right now!”

So my body went from flashing yellow to a blaring red : STOP!!!!!

A little over a month ago, I was reading when half the page disappeared. No joke. I could only see half of every word. A very strange and scary experience. So I shook Dave awake with a, “Honey, I need to go to the ED.” Complete resignation. No questions anymore.

The details since don’t matter as much as the lessons I’ve learned. But in brief, I am in an even deeper state of limbo… not quite knowing the true cause of my weakness and Optic Neuritis (the partial blindness ) yet (MS? CIDP?) and therefore not able to receive the right treatment aside from high dose IV steroids to abate my symptoms.

So nothing left to do but Surrender. Wave the white flag of blind faith (literally this time!).

And to reach out for help. I already feel physically vulnerable, so why is it still so hard to completely crack open and be emotionally vulnerable, too?

If anything, this move was a great practice lesson. My husband is the first to open his door to others when they need a helping hand, but he latches every bolt when it comes to receiving help for his own needs. This time I didn’t let his fear of “not seeming like enough” dictate our choices and I threw open every door and window wide with a sign hung proudly, “HELP NEEDED WITHIN.”

And my friends and family showed up. They packed, they listened, they moved, they cleaned and scrubbed my new abode. All with a smile and an encouraging hug. No expectation of return payment.

This move would not have been possible without this team!

So why should my health be any different?! I need to throw out the old skipping records that get stuck on the refrains filled with shame. Shame over my diseases, over my needs and inability to “do it all” for myself; shame over what I used to be like vs what I am like now; shame over always needing more.

But, most of all: FEAR. Fear that I won’t be able to give back. But we all have our own gifts to offer to the world. And for a long while, mine were coming in the form of my words; of being completely vulnerable through my stories. Through sharing with others and having them, in turn, share with me.

But as soon as life became overly tangled, I stopped writing. Which essentially dammed up my River of Grace… the universal energy that flows into, through and out of me… on to you… connecting all of us on this divine journey of life. So that WE ARE NOT ALONE.

So I think of Buddha’s quote, “if you light a lamp for someone else, it will brighten your own path.” And it helps me remember that whenever someone “allows” me to help them, it always feels like I am the one receiving the gift!

So while my path is now being illuminated by the inner light and energy from other’s  (as I write a dear friend is coordinating meal help for us; fulfilled by those who know me and others who are doing so purely as a random act of kindness); I am holding out my own candle in hopes of lighting just one other’s dark path of the unknown.

There is so much going on beneath the surface of each of our lives.  Let’s look just a little deeper inside.

I know I’m grateful someone stopped and did so for me. All while holding a candle to help light my way, as I take just one next step forward along the path. For as long as I’m moving forward, I’m heading in the right direction.

Namaste.

“Give Up All Hope”? Nah.

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“Give up all Hope.” This was the provocative opening to a recent post by my dear friend and burgeoning life coach, Molly Larkin. I was instantly hooked. I found her words insightful and inspiring. But also frightening. I began to question my own dogma. At first, this unnecessarily “worried” me. Have I been wrong? Have I been influenencing others negatively with my words? In large part because I agreed with Molly’s thoughts and at first they seemed to be in contradiction with my own.

But the beautiful thing about debate (even an internal debate!) is it gets the self to think deeper—to think broader.

And I realized: 1. There is definitely more than one way to skin a chicken and 2. Words mean different things to many different people. That’s why even Merriam Webster lists multiple alternate (and sometimes opposing) definitions for an individual word.

So let me back up a bit to the beginning…

Molly’s post that got my mind a’spinning explained that she has had such “hope” for so long that if she only parented differently, her son would be/behave differently. And recently it was brought to her attention that this may just be the way her son is. “What if it’s always this hard?” her friend asked (what a great question!). She realized she was bringing herself unnecessary suffering by always “hoping” that things will change some day.

“And the hardest part, I came to see, was the belief that things should be or were about to be different. And that it was up to ME to figure out some way to fix them.”

Hence the “Give Up All Hope” post-it.

Expounding on this idea, she brought it full-circle to the roots of human suffering… we spend so many moments waiting for the next moment (the “better” moment) to happen that we completely miss out on the life we are given.

And this is where I got turned on my head. Hope has been the cornerstone of my faith (before I even had faith) over the last decade plus as I have faced medical challenge after physical challenge after personal challenge.

BUT  at the same time, and this was my conundrum, I agree 100% with her assessment of suffering.

So, how can both be true?

It all comes down to reaction instead of action.

For me, I realized, it is not the idea of hope that causes me suffering, it is the attachment to a specific outcome of hope that causes suffering. When I start defining what hope should look like or feel like in my future life, that’s when I get into trouble.

Hope for me is truly: Hang On Peace Exists… internal peace.

It’s remembering that “this too shall pass.” It’s actually the process of not forming an attachment to the present situation.

Hope for me is a personal journey. It is knowing that I am powerless over external forces in my life. That includes friends, family, my husband, my illness and the doctors, the freezing cold weather (!) and many, many other things. But I can also have hope that each day I’ll wake with a little more acceptance about what is. A little more grace and gratitude for what I do have.

Instead of trying to change myself to “better fit” into my environment, I hope only to see a little more clearly each day that everything is exactly as it is supposed to be. And that includes myself.

And that when I hope or pray that “this too shall pass,” I am not hoping that the situation will pass or change but that my attachment to it will. When I start to let go of my attachment to outcomes, it frees up an enormous amount of “heart space” to live and just be, in that moment.

I know this to be true. Because I have experienced it. And because I have experienced it before, I can hope that this feeling of true peace with what is will come again.

This is how I came to terms with the dichotomy of feelings I initially had towards Molly’s post.

I won’t give up hope. Because that to me is giving up any chance that each day can be a little bit better. And by that, I mean, I can be at a little bit more peace. Hold On Peace Exists.

To me, just by writing her brave post, Molly showed hope. Hope for acceptance of who she is as a mother and who her son is as a unique person.

Just imagine if we all hope for a little more of that peaceful acceptance in our lives… we would each begin to walk around looking others in the eyes and being able to fully look our own selves in the eyes, with the truest sentiment of “Namaste:”

“I honor the spirit within you as I honor the spirit within myself.”

So, now read the definition of Hope:

1. “To want something to be true and think it could be happen or be true.” And
2. “to expect with confidence”: TRUST

and look at it in a different light. If the thing you want and think could be true is no longer a specific outcome that will change the current situation of your life but rather that you now “trust” that the thing that is true is yourself, doesn’t it change everything? Have hope and trust that the truest thing is who you are, where you are, and what you are already doing. Now the hope lies in the peaceful acceptance of these facts.

For the other part of “Namaste” is the acknowledgment that god/goddess/spirit resides in all of us. It is the humble removal of ego. It is the awareness that we are all one.

And at that center of that oneness is a perfect creation.
I hope that today you can look yourself in the mirror and wish yourself “Namaste.”

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These Are My Graces…

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Yesterday, was my father’s birthday. He passed 4 years ago and so with the day brings a deep sense of melancholy, and yet… all I feel is JOY at the myriad of ways his spirit shines through me every moment of every day.

Today, I am in more physical pain then I have been in years. Meds have been changed, symptoms flared, and yet… all I feel is GRATITUDE that I am able to be with my closest family today; the ones who do not expect me to be anything other than me.

A couple days ago a dearest friend called in deep distress over the sudden loss of her closest mate, her dog. And my mind reeled with the age old question, “Do we close ourselves off to love to protect against the pain of loss?” And yet… all I feel is BLESSED at the way every being in my life has shaped me; has made me a better person. I have lost a lot… and yet I have also lived a life full of love.

Today, I turn on the news and once again bear witness to the tragedies of war and famine, death and disease, throughout the world, and yet… all I see is STRENGTH in the faces of my brethren, and the little acts of KINDNESS that are woven through the stories of strife.

THESE ARE MY GRACES…

The way I live my life… the way I view the world.

Threaded through my heart, coloring all that I see.

Influencing the way I treat others, and in turn, the deep compassion in which I am treated.

It is seeing a world full of ABUNDANCE instead of loss.

Grace, no longer reserved for just the Christian community… it is there, right there. Every Where. For every one of us.

Ripe for the picking.

Grace is not a thing you can earn, or deserve, or create, or even lose.

You do not have to be “redeemed” by grace; we are all gifts of grace.

It is always there. It is in the sparkle of newly fallen snow, blanketing the world in a clean, new slate.

It is in a child’s smile as they crack open from ear to ear at the mere sight of you.

It is in the gentle pressure of two hands as they encircle you in love, in support, in comfort.

It is the feeling in your heart when you give of yourself, passing the grace, to another.

It surprises us. When we are at the end of our ropes, Grace appears with an extension piece to help us get our feet placed firmly on the ground again.

It astounds us. A reminder that “no matter how tragic or bleak things get, the bad simply can’t shut out all the good, the dark can’t squeeze out all the light.”

It is our safety net: woven from the hands of loved ones, the history of passed ones, the memories of times survived, the hope that there will always be a brighter day ahead, and the knowledge that this too shall pass, and that in this moment, grace shimmers below the surface of everything.

And although GRACE is an unexpected, yet utterly amazing, gift waiting to be opened anew each day, you can still be an active participant in grace….

Pull grace into your life. Tonight at dinner, invite everyone to share their best “Grace Story.” This a great way to express gratitude for the ways grace has graced your life; and to role-model this attitude for others, especially children.

Be a witness to Grace’s magic. We’ve all heard of Bird Watchers, now it’s time to become a “Grace Watcher!” Keep a grace journal, where you document the ways grace has worked or appeared in your life each day. Review it at the end of the week and be uplifted.

Be a Giver of Grace. Look around today. Who in your life needs to be reminded that grace is still working in their lives; who needs to be uplifted by a moment of grace? Is there a way you can pass the grace this Thanksgiving, without that person ever knowing where it came from? Challenge yourself to this. It will be surprisingly rewarding: doing a random act of grace just because.

Turn yourself over to grace. Choose a day during the upcoming holiday season where you put your calculated “To-Do List” down for a day. Let grace guide your day instead. Trust that what needs to get done, will.

And most importantly, be open to grace. Center yourself each day with a short mantra. Mine is, “May my mind, eyes and heart be open today to seeing and receiving the gifts of grace that cross my path.” The challenge comes in accepting the gift of grace in whatever form it comes. No “return to sender.” Remember if at first I doesn’t seem like the right fit, try again. Grace often appears in unexpected ways and at unexpected times, and yet it is always just what you need in the moment to get by.

“The winds of grace are always blowing,

but you have to raise the sail.”

{Ramakrishna}

Dear Life…

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Dear Life,

You have been unpredictable and you always keep me on my toes.

At times, I even dream of trading you in for a newer, shinier model.

I can develop “life envy” when comparing mine to others around me.

Sometimes I want to scream, “What the heck is the meaning of all this?
“What is the purpose of living a Life such as the one I’ve been given?!”

But, in the end, I always come back to the same answer…

THIS is My Life and I wouldn’t trade it.

I wouldn’t want it taken away from me.

I wouldn’t want to be robbed of the chance to live it.

And, then, Life, you’ll throw me another curve ball.
Like the one that was lobbed at me yesterday…

Time for another emergency surgery,” Life reminds me with the insistent alarm that keeps going off in my side. This time, the snooze button does nothing to delay this scheduled appointment with My Life.

And I am reminded, “Tam, just because this is the hand Life has dealt you, doesn’t mean you have to play it alone!

So I reach out to others.

Some surround me instantly with Love and Support.

Some even put their own Lives’ on hold for a bit, to help me navigate mine.

But I also discover that many, the ones I most need and crave right now, are so used to Tam’s Life, that this is just another regular ol’ occurrence for her.

No need to worry. Don’t be alarmed. We’ll just go on with our Lives and pretend that everything is just fine.

And they’re right, I am used to a different quality of Life than most.I have had to catch these fast balls many previous times.
And in the end, I’ve always come back swinging, “Watcha got next for me Life? Huh? Huh?!

But, what if this is The End, Life?

What if I’ve already played out my 9 Lives?

Just because I’ve gone through this before, doesn’t mean I, too, don’t battle the arch-nemeses of Life; Fear, Anger, Hurt, Insecurity, and Loneliness.

If anyone else in my circle of family and friends was facing a similar uncertain future, we would all drop everything to be by their sides, to Fight for their Lives.

Yesterday, when I was signing my release for surgery, the surgeon was going over the four long lines of possible (and many, probable) risk factors involved with this procedure. The last two were: “Heart Attack” and “Death.” And you know what he said, Life? “Well, you’ve already had both of those, so you know the risks involved with these complications.” Chuckle. Chuckle.

BOTH of those? Meaning “death,” too.
And, you know what, he’s right.
Because I have not only met my Life, I have also met my Death. Twice.

So, is this supposed to make me feel less scared?
Because it doesn’t.

Yet, when I inform my closest loved ones of this impending, very serious and complicated surgery, happening in just 2 days’ time, they respond, “Okay.”

Okay? Isn’t that what you say when you let someone know you have to reschedule lunch because you’re having a tooth filled?

But, that just highlights how insanely crazy You are, Life. So insane, that insanity begins to appear as normalcy.

And, yet, I still wouldn’t trade you in.

I want to keep living you, Life.

I still have uncharted parts of myself and the world that I want to explore.

I still have so much love, light and energy to give to others.

And I still have a great big capacity to receive that love back.

As I write you this letter, I sit outside in the waxing and waning sun. Watching as it plays hide-n-seek with the clouds. I listen to the one of a kind bird song symphony, never to be repeated at any other time nor in any other place. A unique crescendo of my backyard birds, a concert for one.

I listen to the traffic coming and going on the expressway behind my house. And I dream of where they are headed. I dream of where I next want to go.

I can feel the soothing, loving presence of my husband as he gets ready inside. The one person who has born witness to the all of you, My Life. And never takes for granted the extreme pressure I am under…

I am constantly pushing you up hill. But, I am up for the battle.

I do not planning on meeting your shadow self, Death, again for a long time to come.

But, I also know it is not solely up to me.

So I’ll make a deal with you, Life…
Don’t give up on me and I won’t give up on you.

Love,
Tamara
aka: HopeSpirit

On Behalf of All the Un-Mothers…

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Today is the day we celebrate motherhood. And rightfully so, for none of us would be walking this planet without first being safely ensconced in a mother’s womb (and for many, loved and guided for many years post). But for us “un-mothers,” it is also a glaring day-long reminder of our own inadequacies to “do as nature intended,” of hopes dashed, and wishes left unfulfilled… of pure emptiness.

Social decorum keeps my hand hovering above the keypad, afraid to strike these thoughts into permanent notes, and then, the gall, to actually share them out loud. But I also know that I am not alone. And for far too long, I have kept this secret locked away in the closet of my broken-heart.

For many of us with chronic illness, the “simple” act of creating a child is not an option. And for me, it goes beyond even the possibility of infertility treatments to the extreme notion that I have been directed not to ever, ever, ever get pregnant… if I do, I will most likely die.

And yet, I still yearn. The pull to have a child is so strong that I have actually considered blatantly risking my own life to do so. And, yes, I know all the other options: adoption, surrogacy, fostering. I am not opposed to a single one, and actually openly embrace these alternative paths to motherhood. But although anyone can conceive a child (and I mean anyone), to raise a child of someone else’s conception requires large amounts of money and assurances of physical and mental stability for life.

I don’t know anyone who can truthfully assure that, when the future is always unknown. But when you start with the big stamp of “high risk” at the top of your application, you are already climbing up a steep, long and windy hill.

So here I am with a biological clock ticking so loudly it keeps me up at night. And an ache deep in my abdomen that will never be filled.

No one will ever wake me this day with breakfast in bed or flowers and a card.

I will not receive homemade gifts from child care and school… lopsided clay pen holders, tiny plaster handprints frozen in time to hang and admire, Fimo critters that only a child could confidently declare their species, scrambled eggs made with love and drops of crunchy shell, colored t-shirts declaring my child’s never-ending love for me, “MOM is” poems… all the treasure stored more carefully than the priciest of valuables.

I won’t receive spontaneous “Mom you’re the best” and “never leave me, okay?” knee-wrapped hugs.

I will get teary at the month long pull at your heart strings Hallmark commercials not because I am anticipating an equally endearing card from my own child, but because I will never have a chance to experience that intimate moment.

There will be no teenage eye-rolls at my nerdy antics that eventually becoming endearing inside jokes as my child becomes an adult and my best friend.

There will be no one there to take care of me when I am old and frail. To tell me deepest secrets to. Instead of being an elder blessing I will be a burden to some second in line relative.


 

Friends and family comfort me with the fact that I have a nephew that loves me, that children gravitate towards me, that I spent years working with and providing stable beginnings for hundreds of young children. All true.

I used to joke when asked in my twenties as a director of an Early Childhood Center, “do you have any children? You’re so good with kids!”… “Why, yes, I have 135 of them!” It was comical then, because I was so sure that I would have my own soon and until then, the 135 smiling faces each day fulfilled my motherly instincts.

I always knew I would be a mother. My friends would question this calling and often put finding the perfect man, having a McMansion or a high paying job above having a child. Not me. And then, lucky me (truly), I found my soul mate at 19 and he shared in my passionate dream of having children.

We’ve had the names picked out since we were 25. There was never a question in my mind that this was a part of our American Dream. We could not imagine any different outcome. We even knew that if we couldn’t have a child biologically, we’d adopt. It was just that simple.

But that’s the funny thing about life. It doesn’t always work out the way you’ve planned. And in the last 10 years, this has been more often the case than the “everything works out in the end” scenario.
Not having children is one area I haven’t been able to positively flip on its head, discovering the true purpose behind the tragedy. If anything, I can find gratitude in the fact that I did not have a child just before I became seriously ill. For that child would have grown up with a sick, unavailable mother for the first 10 years. But, I also know, I would have always had an endless supply of love.

A friend told me that if I had a child, I wouldn’t be able to be there as the loving support for all the other people in my life, as I am now. That perhaps my future is in helping and nurturing my peers (all the grown “lost-children”) instead of having a child of my own. Perhaps.

All I know is this ache isn’t going away. Sometimes I think it’s even growing stronger. I still dream of the magical stork from above bringing a child in need into my life, into my loving arms.

My arms will always be open for that far-out possibility.

Until then, I honor and celebrate all the un-mothers out there. You are not alone! Perhaps it’s time for us to petition for a Hallmark holiday of our own?! Until then, wrap yourself in loving comfort today… and don’t feel a bit of guilt for carving out some time just for yourself.

 

 

Toeing The Elusive Line of Life

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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!