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!

Healing Through Pain

We have all experienced post-traumatic stress (PTS) from intense life experiences. It can come from a variety of sources: a near-brush with death; the impact of battling intense and painful illness; losing a loved one; a difficult childhood; or breaking off a long term relationship; to name just a few.

The event itself doesn’t matter so much as how it influences us.

This PTS can manifest itself in a number of ways: fear of future life-altering events; free-floating anxiety; newly formed phobias, unrelenting grief; unbidden tears; loss of affect; isolation; and withdrawal from activities. Many times the symptoms are insidious and creep up on us. We don’t even recognize the impact this life event had on us; or we are in denial of it.

We don’t want to admit we are vulnerable.

And, let’s face it, there’s a stigma around the acronym “PTSD.” Oftentimes, we associate it with major catastrophes and/or assume it manifests itself in ways that prevent the sufferer from engaging in life at all.

But once we take away our generalized perceptions of PTSD, there is much that can be gained by recognizing it in our lives, and working through it instead of avoiding it.

Let me give an example…

A dear friend suddenly lost her pet dog last fall. Using the descriptor “pet” seems to diminish the importance of their relationship. She, too, battles with chronic illness and her beloved dog (“L”) had been by her side and been her main partner through some of the toughest years of her life… those days she didn’t think she would ever get out of bed again. But her dog provided love, licking away her tears, and motivation to move, even if just slightly, because eventually she had to be taken outside.

Pets can be important companions to many of us, but I think they hold a special place in the hearts of those with chronic illness. They are the one being in our lives that love us no matter what… unshowered, in pain, grumpy, disheveled, confused, and lonely. They’ve seen the all of us and love us unconditionally.

I witnessed my friend experience months of unrelenting grief. I felt lost and powerless at ways to help her. All I could do was hold the space with her as she traversed this process at her own pace, and in her own way.

Then, one day a couple weeks ago, she had a revelation.

She was walking at the local reservoir, a favorite spot that her and her dog would wander. And she suddenly no longer felt alone.

She reflected on all the times L greeted her with unabandoned adoration, even when she didn’t feel like she deserved it herself. She remembered feeling so down all she could do was lie prone on the couch, too fatigued and depressed to even lift a hand to pet L. But her pup didn’t care, she would climb right up on that sofa and comfort my friend instead. She chuckled as she recalled 10 hour days away from home, rushing in worried because she hadn’t even stopped in to let L out to pee. But, again, her pup didn’t care; she greeted her with enthusiastic excitement just because she was home. No judgement. No shame.

She realized that all these negative thoughts she was having about herself were in direct contrast to what her dog had felt for her. That the best way to honor L’s life was to treat herself with the same unconditional acceptance and love that her pet had.

And then she said the most remarkable thing: “If I could find meaning in her life, I can find meaning in her death, too.”

She went on to say she had fallen into the victim role, angry at her pet for not being here to help her through this grief. Knowing this is an irrational thought, but her heart aching because L had been the one to help her through every difficult emotion over the last decade+. And this was the most painful emotion she had ever faced.
But, another “a-ha moment” had come to her: before L died, she only had her there to help her when they were physically close. Now, she had her with her all the time, and could tap into that unconditional love and understanding whenever, and wherever she needed it.

“To live in the hearts of those we love is never to die.” (Thomas Campbell)

She concluded by realizing that by taking care of herself, she is better able to be there for others. She won’t reach out if she isn’t making life choices that are in her own highest good.

And I have witnessed this transformation… she is now providing support to others that are grieving, because she is authentically speaking from her own experiences.

And by sharing her experience, strength and hope with me, she affected me deeply. It demonstrated the importance of living through the PTS until you can see a purpose in a difficult situation.

I, too, am in the grieving process right now. I am not grieving a specific person or being, but then again, that’s not entirely true. I am grieving someone. I am grieving myself. The person I was pre-illness. And I realize I have been living with the silent stalker of PTS for years, because I haven’t allowed myself to fully open up to this process of grief yet. I thought I was “okay,” that I had moved past it, that I was accepting of my situation. And in many ways I am, but that doesn’t negate the need to grieve what was and what could have been.

I need to look at that “lost Tam” with unconditional love and then give my current self that same gift of love and acceptance.

What experiences in your life have left a residual stain on your soul? An echo of yesterday that you haven’t completely been able to let go of yet?

I realize PTS doesn’t just go away by wishing it so. The passage of time doesn’t necessarily allow it to fully fade into the sunset. And pushing it to the recesses of our minds, tucked away in the box marked “things I’d rather forget” doesn’t work either. The only way to move beyond the experience and the left-over PTS, is to move through it. To dust off that box, open it up, and feel every ugly, painful, sad, angry, resentful, shameful emotion until we are spent. Until there is nothing left except an empty box to start re-filling with healing thoughts of love.

And, remember, this process can be big and scary and overwhelming. But you don’t have to go it alone! In fact, it’s advisable to find people that have traveled this journey before you to light the way. My friend experienced all the stages of grief with the help of support groups, hotlines, and friends. And she is now paying this gift forward by helping others. And I’m reliving my past with the help of a mentor and my friends, no longer holding these feelings in secret.

May today mark the beginning of a new healing journey for us all!

On Behalf of All the Un-Mothers…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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.

“What Goes Up Must Come Down”

“What goes up, must come down.” These lyrics keep dancing around (banging around?) in my head.  They seem to be the only thing that accurately describes my current state of being. And let’s face it, my life in general.

Once again, the rug has been pulled out from under me. I felt like my life was traveling in an upward momentum. With starts and stops along the way, of course. But, truly could I expect anything less? Still, generally moving in a positive direction.

After such a struggle throughout the fall, with a constantly flaring body unresponsive to current courses of treatment, unrelenting fatigue, and an onslaught of back and forth calls to insurance pleading my case, there was finally some light at the end of the tunnel: infusion treatments were finally approved, literally in the 11^th hour.

I began my Simponi Aria infusions around Christmas and experienced immediate improvement in my symptoms. My morning stiffness went from 3 hours to 2 and even onto a mere 1 many days!! My fatigue was abating and I was able to participate in multiple family gatherings without weeks of post-event “crash and burn.” It was a gift. It was a miracle!

I anxiously awaited my second infusion and experienced similar success, even a tad better this time!  “We may have finally found something that treats my autoimmune illness,” my heat sang with glee!

Visions of days without pain coupled with participating in, instead of just sideline observing my life danced in my head! I even allowed myself to daydream about a future of renewed productivity and purposefulness.

In the last couple of weeks, my body started to crash again (hence the lack of blog posts); locking, swollen joints, pain and fatigue. But this time, I was happy for the symptoms. Strange, I know. But they were clear indicators that the infusion indeed was working because I was on a downward trend heading right into my next scheduled infusion…

This Monday! Hooray!! I can’t wait! Bring on the relief!

But, then, remember the second half of my opening refrain? …

“…Must come down…”

And, come down it has. Crashing down.

Today, was my first follow-up with my rheumatologist since the start of the new infusion treatments.  I gave him the same low-down I just gave you. And he looked sad. Defeated.

“Has the billing office contacted you?” he tentatively begins.

“Guess they’re leaving it up to me to be the Bad Guy.”

What? What is he trying to say?! My heart begins to sink. Am I hearing this right?

Both Medicare and my (supposedly “super-duper”) private secondary insurance suddenly decided to retroactively decline my treatment.

“Its off-label,” they tsk. Tsk.

Well guess what numnuts?! EVERY medication I take is off-label.   I have a RARE disease that does not get studied because it is not profitable for the drug companies whom sponsor said studies. Never mind, that my disease, Relapsing Polychondritis, has an extremely high mortality rate in untreated cases (before discovery, most people were diagnosed post-mortem). Guess they don’t care when it’s only a 1000 people in the U.S. population.

So, now, not only have they denied any future treatments, they have also reneged on payments due for treatments already administered! That’s 2 infusions at the “cut-rate” price of $10,000!!! How can that even be ethical?

Doctor: “Legally, you could be held financially responsible for this amount. Ethically, I could never allow that to happen. And, we could continue treatments if you have a bunch of cash lying around to pay out of pocket.” Wry smile.

Full disclosure here: I just did our taxes and guess what? My husband and I currently bring in a combined annual income of a whopping $33,000! So, yeah, I don’t think so.

So, bottom line… it appears that insurance (or let’s face it, in this case, the government), feels it is more cost effective to keep me chronically ill (meaning more urgent care costs, hospitalizations and the such, in the future) and unable to have gainful employment (requiring on-going SSD payments), then to pay for a medications that will treat my disease (now) and prevent the progression of it.

What kind of upside-down world do we live in?

But, guess what? The ball has once again landed back in my court.  And what choice do I have but to evolve and adapt once again? To reassess life and the options it presents me, to pick up the pieces and try to build something worthwhile out of the rubble…

And I will.

But, for a short bit, I just want to have a pity-party.

To whine, “why can’t anything ever be easy, or at least simple, for me?!”

Because it just is NOT.

There must be some major life lessons I’m supposed to learn this lifetime around.

They say that when you pray for something, God doesn’t give it to you, he (she) gives you an opportunity to develop that skill. But did I really need another chance to practice Acceptance. Resilience. Inner Strength?

It feels like I have enough of that to fill 10 lifetimes.

Sigh.

It’s Been One of Those Weeks!

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

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

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

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

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

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

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

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

“I Have Arrived. I Am Home.”

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

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

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

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

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

“I have arrived.  I am home.”

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

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

The Gift of Illness: A Re-Invention of Self

“See simplicity in the complicated
Achieve greatness in little things.”
{Lao-Tzu}

There are two ways I can look at my illness: 1. “It was the end of my world” or 2. “It was the start of a Brave New World.”  Today, I choose option #2.  The option of Hope, hope for a new world, a new beginning.  I am in no way trying to profess that this was an easy choice!  I lived with both perspectives and took time before making a final decision.  I don’t think I would be in the place of peace I am today if I hadn’t lived with both the Paths of Despair and of Hope.My hope lies in the recognition of an opportunity to reinvent my life. 

I can actually have gratitude for my chronic illness today (imagine that!).  Because when I look objectively at my life “in the now,” I have been afforded opportunities to discover and develop parts of myself I didn’t even know existed before.  In saying “before,” I mean the time before my autoimmune disease (Polychondritis, Fibromyalgia, Migraine, Chron’s) stopped me from working, and let’s be honest, engaging in most of my previous activities.  In this “T.B.,” I was a Type-A, “go, go, go girl!” I was (egotistically) proud of my ability to multitask and juggle all parts of my life, during all parts of my day.  No breaks! Believing all that “idle hands make idle minds” crap. I mean, really, what was I constantly rushing around for?  Sure I received accolades and “atta girls” from all facets of my life.  But, in the end they were just words; words with no real meaning because they didn’t originate from within me.

Lately I’ve begun to look at this change in my life differently…

I’ve started to celebrate the fact that I was given the gift of reinventing myself!  I look around and see most people on the same path for 40+ years of their adulthood.  And many are content with their journey. But few, too, are afforded the luxury of stepping off the established path and taking side-trails until they re-discover a new route that fits for the next phase of their life.  Luxury?  How can I call chronic-illness a luxury?!  Well, for as much as it has taken away from me (which is plenty!) it has returned, just in different forms than I was used to.  It would be (and has been) easy for me to overlook these new “gifts” ahead of me because I am spending my time looking back at all the things that have been stolen from my life, on a constant hunt to retrieve that which has been lost.  It’s not atypical to be stuck on what once was and is now gone; because trusting in an unknown future is a far scarier prospect.  But this approach only caused me constant emotional pain, regret, sadness, and emptiness.

Then, one day, I decided to look forward. I picked up one of these “new gifts” lying in my (new) path and opened it.  Inside I discovered an opportunity to awaken my inner artist.  It came in the form of a night nurse who suggested I begin beading to pass the time during my lengthy hospital stays.  I was quickly hooked, finding this quiet, meditative activity deeply soothing to my mind and pain fluctuations.  In a short time, I was selling my creations out of my “hospital room storefront” (no joke!) to all the staff.  This first step on this Road to Artist boosted my confidence and helped me to feel productive again.  The best gift was the positive energy I gained and shared with the influx of visitors coming in and out of my room, nurturing my own Soul Beacon of Hope.

After veering off what I thought was going to be “My Path for Life,” which I blamed my illness for taking from me, I realized the first step was the hardest.  I’ve taken many breaks along this new way, some chosen by me and some chosen for me by my ailing body.  But when I reflect on the anguish I first felt at “losing” all the things I thought made me “me” and then I fast forward 7 years to today, I discover that I am now an artist, a writer, a truly present friend and wife, a seeker of peace, a role-model of hope and acceptance, and a Survivor!  I started to look at all things I’ve gained.  No, none of those things would be placed on a resume.  But for me they are far greater accomplishments than all of my professional and schooling achievements.  They are my re-invention of self!

Just the other day, in the midst of painting, my husband commented, “You know, in a strange way, you getting sick was a blessing.  You would never have become the artist you are today if you had continued to be so consumed with work.”  And he’s right!  It used to be hard for me to recognize that a blessing of this magnitude could arise from such severe, sudden illness.  Oh, I’ve always had a hopeful heart and been able to recognize small, daily gifts of gratitude, from a helpful friend to a stunning sunset.  But, again, this was gratitude for all the things outside of me.  To have gratitude for what’s within me?. . . now that’s a truly miraculous discovery!

I was able to pursue a solid career in early childhood education for 15 years.  Now, I am on Re-Invention Phase Two: becoming both a Creative Person and a Beacon of Hope for others. Herein lays the miracle: I can reinvent myself again at any time! It may be self-directed or Universe-directed, but either way, I am staying open to the change. And am embracing the NOW… where I can truly find gratitude in being sick!

Feeling My Feelings: I Can Be Both Strong and Emotional

So, time for another round of back injections.   A true pain in the butt!!  Yet, I was taking it all in “typical day stride” until I told a new friend yesterday that I would not be able to get together today; explaining that I will be otherwise indisposed.  And her reaction surprised me.  I recently found out that she, too, has an autoimmune disease.  We don’t know each other well enough to share details but I assumed she was familiar with the constant juggle of symptoms, pain, treatment options, appointments, etc.  You know, the ol’ Chronic Condition Round-Up:  “Admission is steep, but the ride is never the same!”  And I am sure she has her own daily struggles, but her gut reaction to discovering I was going to have corticosteroid injections was filled with compassion, awe, and even a little fear.  She instantly responded with “Oh, bless you!  I am so sorry you have to go through this ordeal!”

Ordeal!?  And that’s when I realized, it is an ordeal.  I am so used to being poked and prodded, that I have become numb to it all.  And, truly, this has been a very effective coping mechanism.  I think if I let down all my defenses, I would become paralyzed.  Because when I pause to think about everything my conditions entail on a daily basis, it is extremely overwhelming. And when this friend so clearly reacted to this, I became uncomfortable.  She was shining a light on my dirty little secret: my life is hard.

Three weeks back, I was “poked” in one form or another 3 out of the 5 days.  It began with a PPD test (Tuberculosis), no big deal but a prick just the same.   This was just the warm-up though; on that Wednesday, I had double corticosteroid injections in both my sacro-iliac joints (tailbone) and my bursa (hip).  Then I rounded out the week with 20+ Botox injections in my forehead, temples, and neck (for cluster migraines); imagine being stung two dozen times in less than 10 minutes!  And again, when I relayed my weekly adventures to friends and family, it was like I was informing them of that week’s weather patterns.  “Oh a small storm front came through in the middle and end of the week, but for the most part, skies were clear and sunny!” My voice was even, the facts were relayed without feeling; I had lost all affect.

Perhaps I need to pause.  And hold my own space for a little bit.  To give myself a hug.  To let myself know that I am proud of the strong and resilient woman I am.  To cry for all I have to endure on a daily basis.  To mourn for the pieces of “normalcy” I have lost, and will never regain.  To celebrate the Survivor that I am.  To appreciate and honor the fact that I don’t let my illness consume the all of me.  To feel my feelings, whatever they are.  To just be.

I get uncomfortable when others are sympathetic to my plight.  I still struggle with vulnerability.  And in accepting that others don’t view me as a “sympathy case,” they just have empathy and respect for my daily struggles.  And even more so, for how I choose to handle these situations.  Those are the pieces within my control.  And it’s okay for me to have pride over my tenacity and courage in the face of some very difficult daily hurdles.

Each day of my life is like walking through a field of landmines.  They’re old landmines, some are deactivated while others are extremely unstable and reactive.  I never know which one is going to go off or when I am going to trigger a reaction.  Prime example? The Steep Price of Admission I paid for going to the movies with a girlfriend the other day.  But even since then, my body has been “a-buzz.”  It’s like a feeling of after-shocks that will suddenly shoot down my arm or explode up my spine; intermittent and completely unpredictable.

And then lying amongst this field of mines, are hurdles.  Those steep inclines I know I’m going to have to muster the strength to surmount.  Like today’s injections.  I know in the long run they will (hopefully) provide relief.  But in the short term, I have to accept increased pain and aggravation of my symptoms.  I also have to measure the risk of even trying these treatment options that provide sporadic results.  The sacro-iliac joint is the most difficult joint to inject.  It’s nestled deep amongst tissue (nerves, muscle, connective) and is a very small opening.  I’ve observed them searching for it on imaging, watching this enormous needle poking around inside me trying to find the sweet spot.  There is no guarantee that it will hit its mark.

And that’s where I just have to remember to bring it all back to today, to the present moment. Because if I (and many of you!) were to let my mind expand and wander into the days before and all the days to come of this illness and its trials and tribulations, I would curl into a ball like a potato bug and hide forever behind a hard shell.   This is not an acceptable answer for me either.

So, where does that leave me, today?  The conversation with my friend yesterday and my meditation on this today, has given me a clear direction.  It’s time to re-focus my energy on Balance.  Often, I equate this with the delicate balance of doing just enough activity (not too much, not too still) that will support my body’s health without sending it into a flare.  But, today, I need to practice Emotional Balance.  Giving myself the space and the permission to feel the emotional effect all of this has on me; to honor the wear and tear it takes on my mind and spirit.  But this “delicate balance” comes into play in feeling my feelings just enough and then letting them go, finding acceptance and peace in them, sharing them with a friend so I am not alone in my pain and fear.  Letting my feelings flow through me, but not get stuck within me. 

Where do you need to create balance in your life today?

Best Laid Plans . . .

If there’s one thing chronic disease has taught me, it’s flexibility!

Here we are all geared up for our Yurt Excursion and I come down with an awful stomach virus that completely disabled me.  There was no “grin and bear it;” I was so dehydrated and feverish I couldn’t even think straight, let alone travel.  So, once again, we have to attempt to re-schedule vacation plans.  A call is made to the “Yurt Man” and he informs us he has a strict “no cancellation policy.”  Mind you, the money has already been taken from our account.  And, for us, the cost of this mini-vacation is not expendable income! We worked and scrimped and saved to afford this get away.

Here marches in the messengers of “Doubt” and “Guilt,” followed closely by “Shame.”  My husband, in his frustration, begins to get upset… “Why do we always have to cancel our vacation plans?  Why do I even work, if we’re just going to have to throw away the money?!  We should just stop planning anything, and then I will have nothing to be disappointed about!”  Of course, I internalize these mutterings, and hear them as… “Your disease takes away all the enjoyment in life.  If it wasn’t for you always being sick, we could go away.  You and life with you are a disappointment.”  And here is the conundrum of the chronically ill and their caregivers.  He needed to be heard.   And I needed to be reassured.  And neither of us was wrong.  I felt deep shame over (almost) always being the source of our need to change plans at the last moment.  This time, it wasn’t even the illness we know, it was some random super bug either one of us could have come down with… it just happened to me.  And he felt disappointment, and in that moment, couldn’t see a way through the situation.  We both felt stuck.

Luckily we have a relationship built on trust and communication, tools honed through many years together.  I retreated into myself for a while and he did the same.   But I poked myself out of my protective shell and “risked” telling him how I was feeling.  He was able to pause and reflect on what was really making him upset.  I gave him the option of planning solo trips; I truly felt (and feel) that a compromise may look like us diverging on our separate paths at times.  But, he was not keen on this idea.  And let me know his disappointed lied in not being to taking a trip with me, not in the trip itself.  Phew!  Big sigh of relief, one I didn’t even know I was holding my breath on!

Once we both felt “heard,” we were able to reassess the situation and come up with alternative options.  The bags were already packed so why not wait out the virus another 12 hours and see if things look differently in the morning?  And, blessedly, they did!  I was still only about 65% but it was a doable percentage of health!  I am used to traveling “under par.”  We called the “Yurt Man” and had another prayer answered.  He told us we could extend our stay a night to make up for the night missed.  In the end, we ended up getting even more time there (extra hours on our arrival and departure days).

Because we’ve learned flexibility in dealing with my myriad of conditions, we were able to view all sides of the problem and come up with multiple solutions.  This is a gift of having chronic illness!  Most people aren’t challenged on a daily basis to constantly reassess their mood, physical ability, needed accommodations, time, energy and scheduled plans.  At times, this may feel like a burden.  But when posed with an unexpected challenge, you have the resources to think outside of the box!  That’s the gift.

Because we were flexible, I’ve just returned from four glorious days in nature.  Yurting was our first “adjustment,” providing us an outdoor camping experience with the luxury of a raised futon bed and even indoor plumbing!  And what a prize we received for searching for an unique vacation that would suit our needs… views of 80 acres all to ourselves; an abundance of wildlife (from Baltimore Oriels to Barred Owls to even an exotic blue hummingbird that buzzed right up each of our noses, to night coyotes and morning fawns… the list goes on and on!); an opportunity to take off the watch and forget about T.V.; moments to re-connect through Scabble and Yahtzee challenges and the nightly ritual of reading each other to sleep; and a chance for my first foray into Plein Air painting, interpreting the hills and mists and wildflowers from across my field of vision onto my canvas.

The blessing of replenishing the all of me ~ mind, body and spirit.

But the best gift of all?  The self-knowledge that just because I have chronic disease doesn’t mean I have to stop living.  It’s just one more example of how I am living differently.  Recently, my mom said to me that she feared planning a trip together, not knowing “what my body could handle.”  My gut response was, “I don’t know what my body can handle on any given day, in any given hour.  But I also don’t want to let the fear of that keep me from planning anything in my life!  People travel with all sorts of abilities and special needs.  I can’t wait to live my life until I feel better.  This is my life and I want to live it now!”

After this excursion, I truly believe those brave words I so brazenly declared!

LIVE YOU LIFE NOW!  WHAT YOU HAVE AND WHO YOU ARE, ARE WHAT YOU’VE GOT.  USE IT TO YOUR ADVANTAGE… NOT YOUR DISADVANTAGE! 

Go out and adventure and then let me know what you discover about yourself and what you can do!!