To: Chronically Ill at Christmas Love: Peace

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!

 

Hope Heals The Way…

Never give up on hope. I’ve heard people eschew this often overused word as unworthy of attention. A word that only gives false hope, which leads to continued feelings of rejection, loss, and disappointment. But, Hope doesn’t guarantee that life will suddenly become filled with rainbows, leprechauns and unicorns. What it does do, though, is pave the way for possibilities!

Possibilities of a life lived better than the one today. Possibilities for answers to our problems; for solution-oriented thinking.

Because when we have hope, we encourage others to do the same. To not give up… on us. On the situations at hand. On whatever obstacle is currently in front of us.

If I had given up hope 8 years ago today because the doctors told me I had a 10% chance of making it through the night, I am 100% positive I would not have made it through that night. But the doctors, the nurses, all the caregivers saw that hope within me. Because hope burns like the brightest candle in your soul. And it fueled them to work through the night to save me. It is undeniable; a hard to ignore source of personal power.

But I also think that’s what scares people most about hope. Why they begin to shy aware from it, call it out as being “cheesy” or setting oneself up with false expectations. Because they are afraid of their own burning flame… we all have the gift of this, if we stoke it, feed it, let it grow.

But with hope, brings responsibility. Because with hope, you are saying: “I am worthy.” And: “I am worth it… worth the effort.” You are taking responsibility for yourself. You are saying, “I am not ready to give up yet.”

I saw a woman (Cheryl L. Broyles) share her story of hope last week on a daytime talk show. A story wherein 15 years ago she was given 6 months to live as she battled terminal, incurable cancer. But, she said, “NO. I am not giving up hope for survival, for myself, for my life, for my family. And I refuse to let you give up hope on me either.” And here she is, 14 years later, sharing her story. She talks that what keep hope alive for her is making “deals” with herself; “when I reach my 1 year, 5 year, 12 year anniversary marks, I will do the following feat. Or, I am going to stay alive to see my children enter kindergarten, then it was high school, college, and now, have their first child.” And she now helps other people keep their hope alive.

And that’s when it hit me; I’ve stalled out on spreading my hope out to the world. It was the greatest gift that came from my survival; it was my mission statement when I started this blog. It was my goal when I planned to publish my story. And I have done many of those things. And I certainly make an effort to “practice hope” in my individual actions. But there still is a lot to do; there is still a lot a want to share. And that is where I lost my hope.

Because Hope doesn’t mean that life becomes easier. If anything, my life has become, and continues to become, more and more challenging. But what if that’s all part of my story? Who am I to define what hope looks like for me, or for anyone else?

All I do know is that hope means to keep moving forward. To push outside the boundaries of conventional thinking. To look at things in new and different lights. Because it’s not just us with chronic or terminal illnesses, that benefit from this hope. IT IS EACH AND EVERY ONE OF US!

From the smallest daily conundrums to the bigger challenges in relationships with our partners (current and ex!), children, and co-workers. And on to our inner desires and dreams. There are always ways to achieve what we want and need; it’s just not always gained by the conventional route. And that’s where hope comes in to play! Because once you give yourself fully over to the idea of hope (of worthiness), then you can’t help but say, “Well, then, how I am going to make the seemingly impossible, possible?” Once you open the door to new possibilities, you open the door to light.

I often hear hope and faith lumped together. And this, too, can turn some people off to the idea of fully embracing “hope.” Because they equate faith with religion, and that’s not the space they find their hope in. Many people do, and that’s a gift.

But I also want to point out that faith is defined as “belief in, trust in, loyalty to, strong conviction of…” Couldn’t you fill in that blank with so many other verbs and adjectives? “Belief in Hope;” “Trust in something greater than myself;” “Loyalty to myself and my own well-being;” or “A strong conviction in the fact that I am worthy of living a full life.”

My faith lies both in the power of actively practicing Hope, but also in the belief that I am not the one directing what that hope looks like. I may still die tomorrow; but at least I know that I didn’t go down without a fight. That I didn’t live every moment as fully as I could, in that moment. And that I didn’t let others give up on me. Even more importantly, I didn’t give up on myself.

So open your heart to a little bit of hope today. Feel that candle of life, love and energy burn within. You truly are worthy of it… all.

When Your Resilience Is Tested

When your resilience is tested, where do you go? Who do you turn to? What well do you draw from?

There are times when life pushes back one too many times, and I think, “I Just Can’t Do This Anymore!” And… yet, I do. I keep getting back up and taking steps forward – even if they’re itty, bitty baby steps.

Do we all have resilience in reserve? And, if so, is it something we are born with?: Each of us granted a certain set amount of resilience from the universe. And when the well runs dry… well, the well runs dry. There is no overdraft protection on this account.

Or- is it more than that? A bank that receives deposits as much as it gives us the power to withdraw? Think of it like this: every time we experience a stumble in life, yet find the skills, tools and support to get back up and keep going, we remind our soul, the core of our existence, that we have the power, the determination, the inner strength – – the resilience to face the most difficult of circumstances and survive.  We deposit these resilient memories into our mind’s bank.

And “survival” isn’t always “pretty.” In fact, it can be pretty darn painful. Often, we come out of the experience sporting battle scars- – both the kinds that can be seen and the unseen variety.

I used to look at the criss-crossing roadmap that now constitutes me belly and feel pride. Each mark was another war wound – – a battle I had faced and conquered. For just the fact that I am alive today to tell of it = success. I need to remind myself of my Inner Warrior now and again.

Which brings me back to this Resilience Bank. Every memory, experience and story of survival adds to my well.

Personally, I think it is a combination: each of us is born with a certain amount of Resilience Reserve. Some of us may be granted more than others. Or, perhaps, we’re all granted the same amount, it’s just that each of us perceives this well differently. A half-full vs. half-empty kind of mentality. But that doesn’t change the fact that it’s there, for each and every one of us. It’s what we do with it that matters.

As the old adage goes: “It doesn’t matter what happens to us in life, it matter how we react to it.”

“We are naturally resilient. We have the capacity for growth and positive adaption in spite of the constant barrrage of stress we all feel on a daily basis.” (excerpt from The Resilence Scale webpage).  Test your “Resilience Score” HERE.

But the most interesting and complexing thing about resilience is the stark fact that we actually have to experience strife and hardship in order to build it.

Think about that for a moment.

It worries me that we are so concerned with young children feeling worthy and successful, that we actually shield them from failure. The exact thing that creates self-reliance. Aren’t we actually doing a disservice to this younger generation?

Think back to some of the most monumental building blocks of your youth. Many of them are uncomfortable to relive. But, at the same time, they are also the experiences that shaped us and helped us to learn integrity, cooperation, self-reliance, perseverance, and resilience. We had to learn how to handle failure such as our team losing a game, or disappointment like when our 6th grade best friend decided to stop talking to us in 7th grade, or determination like when we got a poor grade on our report card because we had slacked off on studying.

Failure builds character. When we rescue loved ones from experiencing, and in turn overcoming, strife, we steal this opportunity from them.

These starts and stumbles of my youth prepared me for the difficult adulthood I’ve had to endure. Because my parents and teachers didn’t rush in to save me, I learned self-coping skills (even if I didn’t see the advantage to this at the time!).

Last Sunday marked the 8 year anniversary of my colon perforation and my first near death experience; the night they told my husband and me that I had a 10% chance of living, and to say our goodbyes.

Today, I have a choice – – I can drown myself in that memory or I can look at it in a different light – – recognizing that albeit these last 8 years have been enormously challenging, I’ve been alive to experience them. I chose not to say goodbye on that fateful night and I continue to make that same choice today.

The last 3 weeks have been some of the most painful in my life. My Trigeminal Nerve is inflamed and Angry- causing shooting pains across my check to my nose to my jaw. The lightest of breezes and gentlest of touches can set it off. Combine that with a continuous cluster migraine that’s like an icepick in the top of my head, and it can be unbearable. Yet, I am bearing it.

Am I scared? Yes. Am I angry? Yes. Am I in excruciating pain? YES. But, I also remember that the fact that I am feeling these big emotions means that I am alive. And if I pause and remember, I can use my past experiences to get through today. 8 years ago I was in more pain than I ever thought possible. And, yet, today, my mind shields me from truly remembering the intensity of that pain. I was drenched in fear then- of the unknown. Of the known. But I soldiered through. The pain passed. The fear passed—and eventually even transformed into hope.

So if I had resilience then, what’s to say I can’t tap into it today? I just need to practice it, nurture it, fill up the well, drop by drop.

Resilience doesn’t mean I’ve discovered some magic button to prevent me from experiencing some future strife (I wish!). And it doesn’t mean I bounce back from hardships unaffected or unchanged. It does mean that I don’t let the fear of these difficult experiences keep me from experiencing life now. It means that I know that in the past, it has passed. Which means, that this too shall pass. I will be okay. I will survive.

Finding My Own Integrity

Integrity has become the cornerstone of my life over the last several years. And not in the moralistic sense of always doing the right thing, “even when no one is watching.” But in a deeper, more personal way: To always do as I say and say as I do. And what I really mean by that catchphrase is:
To be whom I am. At all times. To be true to myself. To proudly present myself—warts and all. To celebrate the imperfectly perfect person I am!

I used to confuse integrity. I thought I walked that path but in truth I was practicing external integrity instead of internal integrity. I believed that my primary purpose “of serving needs greater than my own,” translated to taking on whatever you held as your integrity; helping you fight for it, preserve it, advocate for it. I would don the appropriate mask for that particular occasion or interaction, performing the part I thought was expected of me. I thought I was acting in integrity by being whoever you needed me to be; that forsaking a part of my own identity was just part of the bargain, a necessary sacrifice of sorts.

I strived to be the best me in your eyes and the eyes of society. I imagined what a person of integrity looked and acted like and I played that role to a tee… the perfect wife, daughter, friend, employee. Thankfully, I have now come to learn that a person of integrity is being the best possible person I Am. As Is.

It wasn’t until I entered a 12 step program almost 5 years ago that I was able to take an honest look at myself. Part of re-learning integrity was learning to let go… of all the ways I thought I “should be” or “had to be” in order to be considered “good.” It wasn’t until I took all the pieces of me—each and every facet that created my beautifully flawed whole—that I integrated the all of me.

Reflecting on the word “integrity,” my mind quickly traveled down the word chain… from integrity to integral to integrated. My curiosity led me to the dictionary where I discovered the cohesive evolution of these descriptors:
Beginning with Integrity: the state of being whole and undivided. Leading to Integral: lacking nothing essential. And finally landing on Integrated: to blend into a functioning whole. Essentially, to become “completely, soundly and entirely united.” PS- Also see: “Honesty”

How fitting is that? Because I now know that to have integrity is to be honest with one’s self. That when I approach any situation with a clear picture of my abilities and truest self, I walk with integrity. I heed my intuition; I act as no one other than who I am.

For me, one of the biggest lessons in integrity I’ve learned is committing to only what I am capable of. So that I truly “do what I say and say what I do.” This can be a challenge with my physical limitations; because I need to recognize the all of me—from my strengths to my shortcomings. And have faith that the all of me is enough exactly as I am.

I cannot commit to everything I want to. But, when I am honest about what I can and cannot do, when I remove all masks and stand proudly naked for the world to see, I am respected. By others, but most importantly, by myself.

And when I remove the self-imposed obstacles of all the ways I used to think I should act in order to be perceived as one with perfect integrity, I am free to flow through life as an unimpeded river of grace. I feel the strength of my own center. And I live from that place: from my own truth.

Martin Lurther King Jr. said, “On some questions, cowardice asks the question, ‘Is it safe?’ Expediency asks the question, ‘Is it polite?’ And vanity comes along and asks the question, ‘Is it popular?’ But conscience asks the question, ‘Is it right?’”

My conscience is the seat of my integrity, the guardian to my inner voice, that when heeded never steers me wrong. But I used to confuse the question, “Is it right?” I would use this assessment as a moral scale, which in my mind said, “do you think what I am doing is right?”

But, I now know, after much shedding of external layers, that I know what is right. I know my own integrity. The key is pausing to listen, truly listen, to what my intuition is saying or asking. To not question it out of fear or judgment of myself. But to open myself wholly to the person I am.

In 12 step programs, there is a daily 10th step inventory where you ask yourself, “What action did I do today that I want to keep?” (IE: where did I walk with integrity). And, “Are there any actions from today that I would do differently in the future?” (IE: in what ways did I not act in my highest good). The beautiful thing about this process, is the more you do it, the more the list of “do-overs” becomes fewer and farther between. Because you learn what it is like to walk with integrity every day. And there is so much joy surrounding this feeling of being honest with yourself–with being 100% pure you– that you no longer want to be or act any other way.

Being honest with yourself is like finally freeing your soul from the caged expectations of self-imposed “I’m supposed to be’s.”

As Parker Palmer said…
“I now know myself to be a person of weakness and strength, liability and giftedness, darkness and light. I now know that to be whole means to reject none of it but to embrace all of it.”

“Give Up All Hope”? Nah.

“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.”

These Are My Graces…

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}

Let Corage and Hope Take On a Life of Their Own

Courage and hope have carried me through a multitude of challenges. So much so that they truly have taken on a life of their own. They are my manifesto – they are my legacy.

Recently, a dear friend challenged me to expand on this theory. She is currently struggling with a flare in her chronic illness. And as I listened to her process, I heard resistance. Resistance of what is and what this means to her life right now (cancelling plans, making accommodations). And all this resisting has served is to turn her down a road with only one clear direction: FEAR.

I get this. I’ve been there. I think we all have at one point.

But when she reached out to me and asked me how I can calmly “label and describe” my current medical situation without any attachment, I felt poorly equipped with the words to help her. Until I read the above quote…

I realized that as soon as I put on my Cowardly Lion’s Badge of Courage, I remember that I am resilient, that my symptoms come and go with the tides, and that this too shall pass.

And even more importantly is my Beacon of Hope. When I shine it out away from myself, even when I am steeped in darkness, it banishes the shadows from the corners of my mind. Fear lives and lurks in the shadows. But when I bathe myself in Hope, it takes on a life of its own. It becomes my lead warrior in the battle against Fear. It will not allow me to succumb to the darkness.

So… I actually began writing this a month ago. At the time, it was in reference to a conversation we were having about my current flare in unrelenting, untreatable migraines. I was joking about my body’s reactions to the shift of the barometric pressure: more accurate than NASA! And my illnesses’ inane need to re-announce itself this time of year. Usually with a never-ending, looping parade of crashing cymbals and blaring trombones… all going off within the confines of my body.

In response to this “update,” she expressed bafflement at my ability to be so calm and accepting in the face of the unknown. “How can you let go? How can you not worry that these current symptoms will turn into a 6 week or even longer episode?”

And this is the crazy thing… it has turned into a 6 week + episode. The reason this entry never got posted is my body decided to go haywire over the last month; old symptoms popping up alongside new and disturbing ones, followed by a string of specialists and tests, including hospital stays, with no definitive answer yet.

But, this is the thing, the miracle of it all: the point I was at over a month ago has become completely irrelevant in the face of my current “predicament” (to put it mildly!). I have become sicker. But I have also continued to put one foot in front of the other. There is no formula that I can apply to figure the duration or depth of this current flare. So why would I waste the precious energy I have on trying to come up with one?

And, yet, I used to think I could.

I realized the true question my friend was asking was, “How can you not live in a constant state of fear?” Fear, most of all, that what is so painful now (whether physical, emotional, or mental), will forever be? That neither of us will ever return to a state of wellness… nor balance.

I can’t say I live without fear. It’s what I do with the fear that makes the difference. I don’t let it set up camp inside my mind and heart. I don’t let it put down roots.

The truth is, I don’t know when or if this (seemingly) never-ending flare will go away. But when I start to tell myself a “story” about my current scenario, I push the pause button. I tried to write my own story in the past, a “Choose Your Own Adventure” style. If A happens, I will do B, C, or D.  Or, if I do LMNOP in the exact right order, then X will not happen. And you know what? It did not work!!!!

All it served was to remind me of my current painful situation, over, and over, and over again. And each time I was confident I had it all worked out, life would throw me a curve ball. And I would have to figure it out on the fly anyway.

So instead I remind myself of my history: the places where Courage and Hope won out. All the times I did get better; all the periods there was a reprieve from a painful symptom, however short or long. I remind myself that I have a team around me to help, made up of friends, family and professionals. And that if (only if, not when) my current bout turns into something more severe, I’ll know what to do. That in the past, I did find treatment. I was able to “ride it out.” I did get better, even if only marginally, it was better.

Then I shift my focus onto the positive aspects of the now. All the ways I am engaging in my life, in spite of. That for every five events I have to cancel, there is one that I am able to participate in that lifts me up.

I ask myself: “Whose side am I on? Which side am I going to feed?”
The side of Fear & Despair…
Or the side of Courage and Hope?

No matter what fearful demons are lurking in the shadows, get out your flashlights and banish fear from the cobwebs of your mind. Just like spring cleaning, it takes a while. It also takes constant upkeep. Imagine what your house looks like if you only clean it once a year, now apply that to your mind…

Fear can build up if you let it, and then Despair sets up house.

OR… your can clear your mind and heart with daily prayer and meditation, with deep belly breathing. By keeping your feet firmly planted in this moment, asking “what can I do for myself right now?” By taking all the headspace dedicated to predicting, preparing, and preventing, and switching focus to the present… building support systems and nurturing yourself (a bath, a book, a nap, a good pet snuggle, …).

Before you know it, your soul will be flooded with light, fear banished.
And COURAGE & HOPE will start to take on a life of their own!

Chasing The Elusive “WHY ME?”

Inevitably, at some point in time, after receiving the news that one is facing a long-term or chronic illness/disease, comes the elusive question of ,”WHY?!” For some, this may be a fleeting call to arms, for others, it becomes a constant refrain of, “Why?” or “Why me?” or even “Why, God, why?”

During my last hospital stay, the progressive pastor of my family’s church came to visit me. After the necessary check-ins were taken care of, he turned toward me, and simply asked, “Do you ever find yourself questioning ‘why?’.” I have wondered since what direction he was taking the conversation in, if he had any expectation of what my answer would be. But this has been fleeting, because in all truth, I think he was just curious.

In that instant, though, there was no hesitation; I didn’t even pause before responding: “Yes. I am sure I have asked, ‘why?’ at some point in this long journey. But I have quickly discovered that this is a fruitless pursuit; a question without an answer; a path that only leads me to remaining stuck in the miserable moment.”

But that conversation has left me with equal curiosity. What is the point in asking, “Why me?” in the face of any number of events (I’ve heard this turn of phrase applied to everything from an unexpected car repair bill to a diagnosis of cancer), when one could just as equally be asking, “Why not me?”

The relentless lamenting over the “why” produces an on-going cycle of strife and depression. How could it not? There are no (satisfactory) answers to this perennial question. But there are concrete, solution-oriented, answers to the question of “What next?” We don’t know the why, yet we do know the how. It’s what we do with the how in the now that defines us.

I know I am sick. I know that there is currently no cure for my autoimmune condition(s). I know that my disease will continue to progress, causing a ripple effect that may require future surgeries and invasive procedures. I know that the mountain of daily meds I take to treat my diseases and conditions also create an equal amount of unpleasant side-effects; and that it is difficult to separate the two apart.

But I also know that I am a fighter. I am creative in the face of challenges. I discover new pathways when faced with a seemingly impassable road block. I am a giver of light, love and energy. My mantra is “Hope.” I know that I do not have to face this life alone, unless I choose to isolate. Which I do not.

This is where I can put in action the “What next?!”

Each surgery may chip away at the person I used to be. But that’s the key, used to be. Not the person I am now. Life is not stagnant and neither am I. In the course of my conversation with the pastor, I shared my views on the River of Grace that flows through me, receiving energy from beyond, recharging my own Soul Beacon, before continuing to flow out into other souls around me.

He smiled and said, that sounds like what Jesus speaks of in the bible, “Our Well-Spring,” that source of God that flows through each and every one of us, just waiting to be tapped into.

I have heard many people refer to this well-spring in their own words. I have heard it be called: Universal Energy, Chi (Qi), Kundalini, Indomitable Spirit, God’s Grace, Life Force, Eternal Flame, and many other monikers.

For me, it is my River of Grace. Because a river is an ever-flowing body of water, that both draws from many sources (is not a singular entity) and pours itself into (nourishing) many other bodies of water. Rivers are not stagnant, they are an ever-changing and evolving path through life. And water is our life’s breath; we cannot survive without it and 2/3rds of our bodies are made of it.

My River is a well that never runs dry. Yet, it is my responsibility to drink from it, to pull from it to renew my spirit when it is lagging.

Which brings me to the Grace part. I think of grace as a gift. As the ability to look for the light in a sea of darkness. To see beauty and gratitude, no matter what the situation. To ask “what’s my next step” instead of getting stuck on the repetitive refrain of “why?!?”

And then I decide to look up the official definition: Grace: “unmerited divine assistance given humans for their regeneration” (Meriam-Webster). To merit something, is to earn it. You don’t need to do anything to earn, or to deserve, grace. It’s there for all of us. A gift from beyond ourselves, to regenerate the mind, body and spirit.

We have all experienced unexplained loss, devastating, mind-numbing losses. We have all had to endure unnecessary pain, physical, emotional and/or metal. Or had to witness, powerless, as a loved one is faced these. We have all encountered enumerable challenges, obstacles and sudden change.

These experiences are what define us. It is what has defined me.

But I have also chosen not to have them be the all of me. They are one part of my story. They are U-turns on the path of my life. And instead of sitting down in the middle of the road and stopping, staring befuddled behind, below, and around me. I’ve decided to look straight ahead. To tap into my River of Grace and chart a new course.

This attitude has carried me and allowed me to see my life as full of opportunities. To say, “What next.” Instead allowing myself to feel victimized, always the punchline, left lamenting the “why?”

Think of one area in your life where you can flip your knee-jerk response of “why?” on its head. Start small. See how this one shift in attitude affects your whole day. Your whole week. Your attitude and out-look on the things that come next.

And if you already embrace an attitude of “what next,” please share your experiences so that they may inspire and encourage others!

Dear Life…

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

Hope for the Hopeless

I have been far too absent from the blogging community and I have felt the significant loss of this supportive limb. Each of my days over the last few months have been deeply entrenched in “survival mode.” Not only has my disease been in a deep, unrelenting (and deeply unforgiving) flare, so has my husband’s chronic mental illness.

Many times the caregiver’s needs are forgotten; they stand in the shadows making sure everything functions yet are barely seen, and almost never acknowledged. This fact combined with chronic depressive disorder, is a ticking time bomb for disaster.

And over the last month, that bomb has exploded not once, not twice, but over and over again, as my husband has reached his internal boiling point and has no longer been able to contain nor handle his volatile emotions.

During several of these “boil overs” he has expressed his frustration with the way our life has turned out. “It wasn’t supposed to be this way!” And I have no opposing argument, in fact, I agree. But at the same time, I am not sure what other way it is supposed to be. All he wants, I know, is some reprieve… from the doctors, from our illnesses, from our poverty, stress, worry and fear. It is overwhelming and unrelenting. And when you feel physically “down” at the same time, it’s even that much more difficult to handle the onslaught of continuous stressors.

A couple times, he’s taken it a step further. Vehemently stating that he doesn’t see in any way that this is a life worth continuing to live, if this is the way we are going to live it. He went on to argue that perhaps we are not meant to live long lives. That we might as well give in to our disease processes and let our minds and body fade away like they would have before the “wonders of modern medicine.” He challenged me to “show him” in what way our lives are worth continuing.

Now there is no denying that this cut me to my core and made me question my purpose on this planet. But, there is also something undefinable in me that still keeps fighting. I was armed with arguments of the ways our life does shine (friendships, experiences, each other, etc.), but also knew he is not currently in a place to hear any of these points. So I took another tactic, agreeing with his stance, arguing that perhaps we shouldn’t strive to live past 60, but if that’s the case, then let’s squeeze the all out of life for the next 20 years and go out with a bang! In some ways, I kind of liked (and still do like) this idea.

During this current period of strife and struggle, I keep finding myself humming the Glen Campbell song lyric, “Everybody’s got a hold on hope, it’s the last thing that’s holding me.”

And in reflecting on how we can both have two dramatically different outlooks on the same circumstances, I’ve been reminded of a Cherokee fable. Just recently my mom asked me to refresh her memory about this inspiring story, one I shared with her when she was asked, as a lay Presbyterian, to give a sermon on Hope for her church.

The story goes like this…

Each one of us is born with two opposing wolves inside.

One wolf is “FEAR.” And out of the mouth of this wolf comes a constant internal barrage of anger, greed, jealously, sorrow, regret, arrogance, self-pity, guilt, competition and comparison, feelings of superiority and inferiority, and ego.

Many of us can identify this wolf… we may call it by a different name: our judges or critics, the voice of our short-comings, our shadow selves, or our sub-conscious monsters. But this wolf by any other name, is still the wolf of Fear.

But, there is a second wolf, the “Good Twin” so to speak, who goes by the name of “HOPE”. This wolf speaks softly and gently of love, joy, possibilities, happiness, dreams, miracles, sharing, serenity, kindness, peace, friendship, compassion, truth, love and faith.

As we grow, only one wolf can survive.

“Which one survives?” you ask…

THE ONE YOU FEED.

Think of that for a moment. Which wolf are you feeding today? Are you filling the belly full of the one named Fear? Letting it grow and expand until her voice blots out all other? Or are you ingesting a conscious diet of Hope? Doing things to nurture her growth and development, so that her voice grows stronger and louder until all you hear are internal messages of Love and Faith? So that when you open your mouth, these same sentiments steeped in Hope come pouring forth to everyone around you?
Because the more you share your hope, the more of it comes back to you.

I am so grateful that while at lunch with my mom, she unearthed this memory of years back. Giving me the opportunity to remember not only how I can feed the wolf of Hope for myself, but that the person she came to for inspiration and thoughts on hope, was me. That when many are struggling, they reach out to me. That I have faced innumerable challenges, and have survived. That through my personal struggles, I have been given the gift of passing this Hope on to others.

And that even though my life is far from “ideal,” it’s mine. And it’s all that I’ve got.

It’s up to me what I am going to do with it.

Just for today, I choose to feed the Wolf of Hope. This wolf has soft white fur, and kind blue eyes. She is my protector and my guardian, and she leads me down the path of possibilities.

What is one thing you can do today to feed your Wolf of Hope?