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!

 

Lighting the Unknown Path

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.

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.

Inviting My Inner Critics To A Tea Party = Courageous Living

I have decided to make friends with the Critical Voices in my head. I imagine inviting them all for tea and a round table chat—welcoming them in instead of automatically shutting the door in their faces, which is what my defense-mechanism gut is urging me to do.

I will let them know that I have invited them over to listen to and hear the value in what they have to tell me, observations they may have after years of “hanging around” my life. But that I will also accept these words with conditions. I honor and respect myself enough now to do so.

Historically, these voices have presented themselves in un-helpful ways:

• They speak in black and white; they tend to have no “grey zone.”
• They show up as voices of reason, which can be confusing. But instead of “You’re not ready yet; maybe later.” I am ready to shift their thinking to:  “You may not be ready right this moment, but let’s see how we can get you  there.”
• They can be repetitive. We know, intuitively, that they are irrational, but their persistency can be deceiving.
• The more we resent these voices, the more they gain power over us. But when we try to form a healthy relationship with them, space opens up; for more kindness, love, compassion and understanding– for ourselves and others (we all have these inner critics).

So, let’s start with an example. It’s a biggie, for me:

My Critic often tells me: “You won’t be able to achieve (or even begin to attempt) this desired dream/goal of yours, until you are physically better. Until then, it’s unrealistic to push forward with this endeavor. It will only be frustrating and create overall, unnecessary distractions in your life.”

I am now going to respond differently to this old introject of fear and negativity:
“I can tell your intention is loving. But the majority of your words are simply untrue. And all they serve by my believing them, is for me to sit and wait for this far off ‘perhaps I’ll be better future.’ Or even more detrimental, they have convinced me to believe that I am not good enough, complete enough, whole enough. Now. As is.”

Then I am going to reframe this original feed-back:
“You have shared some useful information with me. But a more loving and helpful way of speaking it would be …”

“I can see that you have some exciting dreams and desires right now and that your physical limitations have created an impediment to you achieving these goals. So instead of ‘waiting to get well’ I would like to lovingly point out some valuable ways you can achieve your goals: you cannot continue to go this alone. What support, physical and mental, can you access and/or welcome into your life to help you make attainable and doable steps towards your goal? What modifications need to be made to your overall goals so that you can set yourself up for success instead of failure?”

And, here’s the miraculous thing, once I made space for this critical voice in my life, I opened up my heart in new and expansively loving ways. Suddenly I was seeing possibilities instead of roadblocks! And my Inner Judges switched from being critical to critically thinking.

I realize I’ve let this repetitive Critical Voice begin to re-define who I am, and even more so, who I am not (or not capable of being). Constantly telling me what I cannot do, until X, Y and Z happen… until all of my cosmic stars align!

I think we can all relate to this on some level. For we all have Inner Critics. And many have become life-long roommates, hogging up head space since as far back as childhood. Yet, we try to get rid of or ignore these inner voices instead of integrating them.

Kate Swoboda says, “In truth, your Critic is your ‘best friend, with lousy communication skills.’” They are the scared wounded parts of ourselves that deserve compassion instead of distaste.

I, who doesn’t see myself fundamentally as a black and white thinker, had become one. I truly began to embrace these Critic’s voices as my own- as my one true voice- until the point where I thought I was doing myself a service instead of a disservice by listening to and heeding their messages.

They caused me to re-write my story: because my body isn’t currently equipped to truly meet my goals, “reaching for the stars” just isn’t in my current repertoire.

Believing that whole “lower my expectations, so I don’t set myself up for disappointment.” But all this has served is to create disappointment. In life. In my body. In Myself. Leading to resentment.

Yet, what I learned through an amazing workshop called “Your Courageous Purpose,” by Molly K. Larkin is that these critical voices can and do serve a purpose.

Listening to them, welcoming them to my round-table, has opened me up to hearing what’s really going on. How I really feel about the situation; allowing all the big, ugly feelings in first like anger and sadness, before the healing can begin. And then creating some solution-oriented, forward-focused thinking.

So, let’s boil it down to the basics:

• My body has physical limitations.
• I do not know when, or even if, this will ever change.
• Waiting for things to change or “get better” isn’t working. IE: it isn’t serving me or my highest good.
• In the past, when I have reached out to others or openly welcomed their offers of help and support, I have been able to achieve unimaginable goals and dreams, in spite of my physical impediments.

So instead of the “wait and see approach,” wouldn’t it be more beneficial to ask myself some critical questions:

• What do my current goals and dreams look like? Feel like?
• What are some modifications I could make that would allow them to be more manageable? How do they look and feel post-adjustments?
• What are the most important aspects of my dreams (the ones I have the strongest emotional attachments too)? Defining these will help me clarify which parts I can more easily let go of and which ones are the most important for me to hold on to and make work.
• Now that I know the most important parts of my dreams, how can I make them possible now?:
  A. What are small, “bite-sized” steps I can take today to move towards these dreams?
  B. In what ways can others help me in reaching these goals?: Ways others can help/support in the actual achievement of the goal. Or ways they can support in other areas of my life (cleaning, shopping, etc.) so I have the energy to take small daily steps towards my goals.

When doing this process yourself, stay aware of what additional Judges pop up. Old ones, new ones, old ones in new ways. What are they saying? What do you need to acknowledge in their messages? Is there any useful information hidden in the Critical Voices?

For example, just in the process of writing the above exercise for myself, I heard an old judge begin to persistently whisper:
“You’re being selfish. If you have any physical energy on any given day, it should go towards taking care of your home, to supporting your husband and others. Then, if there is anything ‘left over,’ you can reach for your own dreams.” Which translates to: “Your needs/wants aren’t worthy.”

Obviously, this is a multi-layered process. Where did I put that handy-dandy onion peeler again? The one that removes all layers in one swift motion, with no tears? Ha. If only!

But that’s the gift of removing one layer at a time.

So who are you courageous enough to invite to your round table today? I guarantee the process will pay off in the end. Setting yourself free to live the life you are meant to be. Now, that’s Courageous Living!

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!

Calling All Angels

Just over three weeks ago, I had emergency surgery to remove a non-functioning gallbladder (another “perk” of Polychondritis, my main autoimmune disease. Yea!). My husband couldn’t help but announce repeatedly that this was now my 15th surgery in 7 years’ time(!).

The surgery went fairly well as did my initial recovery. After re-learning to walk post a 5 day epidural (I swear, I now know what Bambi feels like on those wobbly legs!), I was happily released.

After my 10 day hospital stay, I was only home for 3 days, when I suddenly developed a hot, sharp and stabbing pain in my abdomen. A same-day CT scan showed a very large small bowel obstruction and I was promptly sent to the ED, to await transfer to the inpatient unit.

This time, my stay was Hell.

It began with the placement of a nasal-gastric (NG) tube. I have always said this is the worst procedure I’ve ever undergone (and that’s saying a lot, considering all I’ve been through!). But this time was even worse. The main disease process of Polychondritis is the destruction of cartilage in my body, most prominently in my chest, ears, and nose. I already knew that the cartilage damage in my right nostril was so pronounced, it was effectively “closed for business.” And I clearly stated to the attending surgeon that only a pediatric sized tube would fit in my left nostril. Yet, she insisted in trying larger sizes first.

The doctor quickly learned that I knew my nose better than her, and had to use the smallest tube possible. Now, I don’t know a single person that feels “okay” about having an NG tube placed, so surgeons are used to complaints regarding this procedure. What they didn’t take into account was my personal history. The pain was beyond excruciating. The only way I can think of describing it is; it felt like someone had first taken a hammer to my nose, shattering the bones, and then commenced to insert (shove) a tube up my nostril, while asking me to drink water through a straw, drawing the tube down my throat and into my stomach.

This was the first time I felt “my light” go out. I felt like my Soul Beacon had been snuffed. I was drowning in pain and couldn’t tell the surface from the bottom.

My husband bore witness to this, and stated later that he saw the moment I let go. The moment my eyes went dull and blank. I would have done anything to make the pain stop. I was ready to trade my life for this relief.

Having these very deep visceral feelings scared the heck out of me. I started to question whether I had the strength to continue this battle being waged inside my body, with no foreseeable end. Slowly I began to fight again, to refuel my Soul Beacon from the exchange of light, love and energy with others. But I still felt dim; like my light could once again blow out with the slightest of breezes.

That breeze came a few days later when my body started to shut down. I had uncontrollable shakes, deep abdominal pain, unrelenting migraines, and spasms traveling from head to foot. I couldn’t focus on anything. There were none of my normal reprieves of drawing or writing, or reading, or even watching T.V. All I could do was lie there, writhing in agony.

I felt myself slipping away. It felt like I had one foot in this world and one in the realm beyond. One breathe from the universe, and I would blow away. Forever.

Without words, my family could tell. My husband and mother put up a barricade around me, keeping visitors away, while silently standing guard. They didn’t complain of hours spent entertaining themselves while I slipped in and out of consciousness.

And then one day, a dear friend of mine showed up unexpectedly for a visit. I whispered a request for Reiki. And while sending me healing energy, she also received messages in return:

She leaned close to me and told me that everything was going to turn out the way it was supposed to; that I could let go (and let God, so to speak). Then she passed on the most remarkable message: “As I have told you before, you are surrounded by angels, spirit guides and light beings that love and protect you. But this time, I felt something even deeper. There is one angel that has wrapped themselves around your entire body. They are protecting you and encasing you in love. They are only waiting for you to call on them for help and support. Use this angel. Ask for their guidance and protection.”

And with that, she left.

I was overwhelmed. If I let go, would that be letting go of this body, of this lifetime? Or would the act of letting go release the tension and stress I felt over having to “keep up the fight?” Could I truly trust in my angels and guides to take care of me, to lead me in whatever direction the Universe had planned for me?

I chose the latter, to trust in this intuitive message my friend passed on. It took me a bit to even find the strength to ask for help. But eventually I did. And that’s when the miracles started to happen.

The nurses discovered that my sugars had dropped so low, I was partially going into diabetic shock. And after several bags of sugar water being pumped into me, I started to recover. Another nurse ordered me an air bed that softy pillowed my inflamed joints. And the doctors finally reinstated my medication regimen that treats my autoimmune conditions (stopped out of fear of effecting the recovery rate post-surgery), most significantly providing infusions of steroids. My body started responding in kind.

But, even more remarkably: I embraced my angel back. I called on the energies that swirled around me for support and protection. And I began to feel like I was wrapped in a quilt of love. A quilt that hugs my body, wherever I go.

I don’t think it matters what your particular religious or non-religious beliefs are. Words like “angels,” “spirit guides,” and even “God,” don’t need to be defined. They can mean something entirely different for each person. For me, they all come down to energy. I don’t believe that when we die, all of ourselves just disappear. We are made up of many charged particles. So our physical bodies may fail us and be sent back to the Earth (to be recycled and revived), but our energy, or our “soul,” stays active. For some, they may find comfort in the idea of Heaven. For me, I truly don’t know. But I do know that I have felt the energy of loved ones passed surround me at many moments in my life. They have sustained me, they have pushed me, and they have caught me when I’ve stumbled. But, most of all, they have saved me. They brought me back from the brink of death 7 years ago, when my colon first ruptured. And they brought me back this time, when my mind and body was too fatigued to continue the fight on its own.

And that’s the key: even when we feel alone, we are not. We don’t have to face life’s challenges all by ourselves. Each one of us has an army of angels, light beings, and spirit guides just waiting to be called upon.

All it takes is a little prayer or meditation. Picture yourself surrounded with light and love. Feel the energy of the universe travel from without to within and out again. We are not stagnant beings, each one of us has a River of Grace flowing with our life force within us. Some believe this river is fed by God, others Buddha or Allah, or a Higher Power. For me, it is not an entity I can name. I choose to call my source God. But my God is not an omnipotent being, it is a mass of swirling light and energy that flows around all of us. Most often, my God wears skin, as a messenger of hope.

Each day I pray to have my eyes, ears, heart and soul open to receiving the gifts and messages from God and the Universe. This way I don’t miss the miracles when they come my way.

Because of this practice, I was able to see God in the form of my friend’s words as she asked me to trust in and use my Guardian Angel.

And even a skeptic cannot argue with the outcome. Because here I am just one week later, at home and recovering, with the energy to share my story with you.

Will I be able to weather another wave of physical assault on my already ailing body? I don’t know. But, that’s the key; I don’t have to know. All I have to do is trust in the universe to provide for me, whatever comes my way. My goal is to spread this message of hope and faith to others, so that collectively, we have the energy to face life’s challenges.

What challenges are you facing today that you could call on your angels or guides to help you navigate? All it takes is closing your eyes, taking a couple of deep cleansing breaths, and then, just… asking.
What have you got to lose by trying?!

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?

Little “Seeds” of Hope

In the darkest of hours, a small beam of light will appear at the end of a long tunnel of pain, suffering, and sadness. Two choices lie before you: 1 – face this light, walk towards it, and let it grow into a beacon of hope and faith. Or 2 – turn your back on the light, shrouding yourself in darkness, the known place of suffering seeming safer than the unknown possibility of hope… of taking a leap of faith.

I experienced this very cross roads just last Saturday. I woke once again in deep, unrelenting pain, with a throbbing sadness in my heart for all that transpired over the previous 10 days.  I felt defeated. I felt lost. I wanted to move forward, but I didn’t know how. And, let’s face it, there was that part of me, as well, that wanted to stay stuck right where I was. I felt tired of “fighting,” of constantly pushing through the pain and misery. I witnessed others embracing this place and dwelling in it. And I actually saw benefits to this option.  The biggest of which would be that people would finally recognize, that just because I can see the beacon of light in the darkest of times, doesn’t mean that I don’t also experience pain, and disappointment, and suffering. They are not exclusive.

I had just settled into my comfy chair when the doorbell rang. Upon answering, I discovered an unexpected visitor on my porch.  A supportive friend and champion, she intuitively knew to take a moment out of her day to bring lightness into mine. She hadn’t intended to bother me, only wishing to leave a small package and note in my mailbox. But my mailman had foiled her plans, ringing the bell just before her arrival.

Exactly as it was meant to be.

Inside this “Delicate! Do not squish” package lay three, half-dollar size, oval seed pods. Transparent, with a little seed inside. Shake. Shake. My friend takes one and gently begins to coax this “seed” out. And lo and behold, it is not a seed after all!  It is this miraculous gift from the sea, the teeniest, tiniest conch shell I have ever laid eyes on (a mere 2-3 mm long!).

I gasp in surprise as my heart swells with wonder and awe.

She explains that upon discovering these years ago on the beach, she researched their origin, learning that conch shells are born by the thousands in connected translucent “cocoons” (often called a “Mermaid’s Necklace”). After a dozen years, they mature into the large conch shells we all covet finding on southern beaches.

Later, I researched them further and found that conch is also one of the Eight Auspicious Symbols of Buddhism and “represents the beautiful, deep, melodious, interpenetrating and pervasive sound of the Buddhadharma [“natural law”], which awakens disciples from the deep slumber of ignorance and urges them to accomplish their own welfare and the welfare of others.” (Wikipedia)

And that’s how I felt; as if I was awakening from a deep slumber of depression. And for the welfare of myself and others, I needed to face that beacon of light.

I was reminded of Helen Keller’s wise words: “Keep your face to the sun and you will never see the shadows.”

And the gift didn’t stop there; she nudged me to read her note …

“When I’ve been through tough times, I have trouble seeing anything besides my pain.  These [shells] can’t heal your suffering, of course, but I hope they remind you that the universe is full of joy and beauty and awe inspiring creations at the same time.  I hope you find moments where you can access that joy.  Please know that, even in your toughest times, you yourself are a source of joy, inspiration and an example of how beautiful God’s creations are to me and to countless others.”

I felt shaken awake. Flashes of beauty and moments of grace began to pass through my mind and heart. Just in the past week, during the period of my deepest pain, I was gifted access to that Universal Joy; I had not fully shut down. There was a crack in my soul just waiting to be re-opened. And, here was an unexpected angel, pushing her way through!

Her words brought welcomed tears and memories of past experiences where life and death, beauty and sadness coexisted in my life. I shared with her another time of deep sadness, when my mother in law collapsed suddenly from invading cancer and passed away 10 days later. My husband and I rushed back from Boston and never left her side. During this time, we would find ourselves sitting outside at the hospital staff picnic table, all hours of the day, situated right outside the birthing center. As my beloved second mother was lying 7 floors above in hospice, we were witnessing couples and families rushing in to bring new life into the world just below her.

And we couldn’t help but feel peace in the light of God’s grace, the universal cycle of life and energy.

There is no pleasure without pain.

There are two sides to every coin.

I made a choice on Saturday to walk towards the light.  This does not mean that my pain, or frustration, or anger, or sadness are gone.  It just means I no longer give them permission to consume my life.

I am actively seeking out moments of grace, of joy, of hope, and of healing. These are the foundation blocks to my continued survival.

I did not arrive at this conclusion alone. Because my “God” wears skin; meaning I see the God in you as I see the God in myself. And when that spirit knocks on my door, I am choosing to answer it.

I am choosing to let the light in.