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“But You Look So Good…”

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“But you look so good!”

Five simple words that can immediately stop a supportive conversation of open-ended dialogue.

I implore you to remove this statement from your vocabulary when speaking with someone who is struggling with a chronic illness.

We know that, at its core, people say this to make the person feel better. And, truthfully, to make themselves feel better, because they’re at a loss of what else to say or do to support us. We know it comes from a place of love.

But, unfortunately, all those five words serve is to demean what we are actually experiencing.

I know this is not the first time I’ve talked about this, but it’s worth repeating. Because people forget.

What often happens, is that it is one of the first things said upon greeting one another, if not the first. So it then makes it very difficult to reply honestly about how we are really feeling, inside, after the proverbial “you’re looking great!” horse leaves the barn.

Now, I don’t want to be misunderstood…

It’s okay to compliment you’re friend, or partner, or daughter/son. In fact, it feels good to be recognized for spending that extra “spoon” (Read here) on applying a little make up or wearing a flattering sweater. But there are better ways of going about it. And if you’re open, I’d like to provide some helpful examples here:

 “You look really pretty today, but I know that doesn’t necessarily mean your body is feeling great. How are you truly feeling?”
 “It’s nice to see you up and dressed, that must of taken a lot of energy!”
 “You didn’t have to get dolled up for me! Tell me what’s really going on.”
 “Its so nice to see you with some color in your cheeks but I know that’s not necessarily a reflection of how you’re feeling inside. Want to tell me about it?”
 “It’s hard, because you always look so great! But I want to know what’s really going on with you today.”
 Or just the simple and straightforward, (and completely understanding) , “Hi. How are you feeling today?”

And then let us fill in the blank.

It’s difficult to make space for truth telling. Many of us are afraid of what our loved ones are going to say. We know you don’t want to see us in pain, let alone hear that it may be unrelenting right now.

Just as we want to shelter you from the reality of our daily pain, it must be equally difficult for you, as the care giver, to feel powerless over relieving your loved one’s hurts.

The most interesting part is you’re not alone!

Even doctors fall into the “but, you’re looking so good trap.” This topic came up recently with a friend who has M.S. and his experiences mirrored my own. He was most baffled that the medical community would so easily fall back on this platitude, too. Aren’t they here to hear our actual symptoms, concerns and problems? Yet, at my most recent appointment with my primary, he led and ended our visit with this very statement: “Well, at least, you’re looking really good!” Because, at his core he was at a loss for what else to say. But, I, as the patient, would rather have silence than an empty comment.

It’s the doctors and allies who avoid this, and give space for comforting silence, that we return to again and again. Who we trust to listen to us. They, you, don’t need to fix the problem or even offer a solution. I have one doctor who at my last appointment, held my hand and said, “I am sorry this is all happening to you.” I didn’t leave the office with an “answer”, but I left feeling comforted.

That’s all we really need is…
 To be heard, without judgement and to be validated.

This may be difficult because we are asking you to challenge yourself. But I truly don’t think this applies to just “us” who are struggling with daily chronic illness. We all, as humans, just want to be accepted for who and where we are, at this moment in time. None of us knows what is “going on on the inside” of another. Each of us may be walking around looking fabulous, yet internally feeling at odds with uncomfortable feelings around our job, an intimate relationship, or even thoughts of our ill loved one.

So, next time you greet a friend, especially one who has an “invisible,” chronic illness, ask an open ended question and allow them to fill in the blanks. And if you are incapable at that moment to hear the truth they may speak, that’s okay, too. Please just don’t dismiss the situation with the blanket statement,“Oh, but you look so good…” You can always say something like, “Hi, is it okay to give you a gentle hug today?” or “I know your energy is a precious commodity; are you up for a short visit today?” Skip over the external appearance all together, quietly validate the person’s true position, and move on.

We don’t expect you to make things better. We just want you to be by our sides.

Did I Make Myself Sick?!

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Did I make myself sick?
This is a question that has always haunted me. And most recently it has resurfaced.

If we have the power to heal ourselves than the inverse must also be true… we have the power to make our bodies unwell. Right?
A week back, a dear friend was doing some energy work (Reiki) on me. During this session, she received messages from my body. This is not uncommon, and I generally find these messages very helpful.

This message was deep and powerful. My friend told me , “The reason your body is filled with so much sh*t is because you have held on to too many secrets from your youth. And by holding all of this in, it has accumulated in your body, therefore developing disease. It is time for you to speak your truth. To no longer be afraid of how it may affect other people, only to share your story. I feel that by sharing your entire truth, you will be helping many others who are struggling, silently, with similar experiences. This is your path, not only to help others, but also for clearing out all the ‘crap’ and getting well.”

I’ll admit at first this was empowering. All I had to do was write and then share, without fear, my experiences. A clear path to wellness was laid out for me!

And I did start writing. It was, and is, a freeing experience.

But I also started to think about the root of the message: by keeping these “secrets” (which for me surround years of sexual abuse at young ages; a fact my friend was not aware of, making the message all the more powerful), I had made myself sick.
That’s what it came down to. And I started to feel uncomfortable about this.

I shared a summary of this message in my monthly spiritual group. The theme was Desire; and I had written a free-floating thought poem…

“Desire, what do I desire?
A morning song without the rain
A day long reprieve from the pain
A skip, a jump, a roll in the hay
Unencumbered freedom from a body untamed…”

By the end, my desire had become simply for a life of feeling connected, “to know and be known” and towards “internal peace and love of self. To acceptance of Me; and every day I’m Here…”

But, this is the kicker: there was just one line in there that my fellow group members picked up on: “I have been told that I fore-chose this life…”

And they became incensed, on my behalf. Telling me not to take on someone else’s dogma as my own. That that would mean that all Jews murdered in concentration camps fore-chose that path, as well as other startling examples.

So I took both opposing views and sat, to develop my own.
I began to think of a young girl I know, just finishing her first year of preschool, and her almost third year of constant chemo for a rare form of cancer. And I thought, “How could a 2 year old fill her self with enough secrets to make herself sick? How could her story possibly be long enough yet, to tell, ridding her mind and spirit of this ‘baggage’, making her body well?”

Yes, I believe we all have the capabilities to make better choices for our spirits and bodies, to live from a mindset of wellness that leads to true physical wellness.

But there is also a huge component of our diseases that are out of our control. And if we get stuck in thinking, “Why am I not doing enough or the right thing to make myself well?” Along with, “What did I do wrong in my past to make myself ill?” It will only lead to a place of despair.

I have received many messages that I have the power to make myself well. But I do not believe that means I am meant to “fix myself” on my own!

It means a myriad of things: making the right choices for my body, through eating well and exercising; strengthing my circle of support with old and new friends, and accepting their help, without conditions; choosing a team of well-respected doctors who can guide me; doing just enough research to be informed without too much to fill up my head (we all know what I mean!); meditating and doing activities that lower my stress and pain levels; keeping my physical space free of clutter and my sleep space a place of renewal; taking time to laugh as well as cry; and so much more…

I also take time at least once a day to visualize a little army of worker elves marching through my body and fighting off my disease; sending it into Mother Earth to be cleansed, recycled and renewed into something beautiful and useful.

These are tools I think are helpful for any person…well- or dis-abled.

And, yes, I will continue to write my story. Just by being away from the blogging community, I have gotten “clogged up.” There is power in speaking one’s own truth, sharing it with others, and hearing their truth spoken back. This can only aid in the progress of my healing.

But can this, or myself, alone, “make myself well?” That’s a tall order! And all it makes me think is that I somehow made myself sick. And that’s a very isolating thought.

I, alone, can’t fight any of this.

That goes against My Dogma: It takes a village…. To keep the flame alive and pass it on.

I don’t know why I live a life filled with unpronounceable, rare illnesses. But that’s not my job to know or figure out either.

The only difference between me and that precious 4 year old girl is that I know I am sick where she does not (quite yet). Her attitude can teach me, and us all, a great lesson. She just lives each day as it comes. Feeling her feelings when they arrive, asking questions with out shame, playing when she feels like playing, resting when her body tells her it’s tired; and loving everything and everyone around her deeply, with natural childhood enthusiasm. Her disease is a part of her day, but it is not who she is.

She did not make herself sick, and the key to “making herself well” is already inside her: its by going forth one step at a time and not missing a beat when she has a chance to fully embrace and engage in the gifts of life that are in front of her!

It’s as simple as that. Not secrets, not truth telling, Just Living.

Inviting My Inner Critics To A Tea Party = Courageous Living

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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!

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Let Corage and Hope Take On a Life of Their Own

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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!

The God I Have Vs. The God I Want

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I was recently challenged to write about “the god you do believe in and the god you would like to believe in.”* I read this as the god I have versus the god I want. Upon reflection, I quickly realized they are now one and the same.

I did used to think of god as a punishing god… or more often, an absentee god. I couldn’t see the ways god was working in my life, so I denied any existence of a god, or a higher power. Truthfully, this “me of the past” probably would have skipped even reading a post with “god” in the title. I was that closed off to the existence of something greater than myself.

If there was a god, where was he/she when I was sick and dying?
When I was abused and attacked?
When addiction consumed the lives of my family and myself; the monster, Alcoholism, marching its deadly force straight to my beloved Dad’s doorstep?
Where was god when physical and mental pain and anguish played ping-pong with me and Dave?
Where, where, where?! I lamented.

Thankfully, I finally surrendered myself to the idea of a greater existence, to a god, in whatever form. For me, it started with daily prayer, most often filled with thoughts of gratitude.

My god today…
…travels in the minds and bodies and hearts of those around me; sending messages and offering Hope through their words and actions. My god wears skin.

My god is energy… energy that flows freely in and around me; energy that is never stagnant. And when I tap into this never-ending supply of energy, creative flow happens. Joy happens. Hope and inspiration happens. Love happens.

My god is always leaving presents in my path. I just have to stay open to receiving them, to recognizing them when they appear so that I can embrace them, fully.

My god is abundance. There is always enough spirit and energy to go around.

My god is a River of Grace that flows through each and every one of us.

My god is neither good nor evil. My god neither rewards nor punishes. My god needs no definition. My god is unique to each and every one of us. My god just is.

My god lives deep within the earth, growing roots to ground me… to bring me home. All the while connecting these roots to others and creating a collective conscious of love and community.

My god is my intuitive voice. The one that sees the path clearly and always know “the” choice for me–never waffling. When I turn a deaf ear to this voice or question its motives, I turn my back on god and my one true purpose in this life.

And, my god lives in the Now. It’s when my mind wanders off the present path and tries to predict the future or live in the wreckage of my past that I lose sight of god.
But when I keep my feet firmly planted in the soil of the now, not questioning the why, only focusing on the what, that I am always moving in a Good Orderly Direction.

Inspiration flows freely.
Opportunities open up like butterflies from their cocoons.
I never have to be alone or feel isolated again, because I feel god everywhere and in every one. And I too shine from within with the light of god.

My god reminds me that “I have arrived.”

* Exercise came from Julia Cameron’s, The Artsist’s Way (p.106)

Hope for the Hopeless

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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?

Stuck in What I “Used” to Look Like

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Sometimes I get so stuck in what I used to look like, what I used to be like, that I cannot find any appreciation for who I am today…

Recently, it was very difficult to hear a loved one saying, while looking through old pictures, “That’s what Tamara looked like before she got really sick. Wasn’t she beautiful?” Not that I don’t say these very words myself, a disclaimer so to speak, letting others know I haven’t always been heavy, puffy-faced, pale, fill in your own negative adjective here:_________.
But this time, I wasn’t the one to point out my “different self,” it was my husband. And I know, in my mind, that he was saying this with pride, letting someone who has only known me post-sickness in on what I looked like in a healthier state. In fact, he most likely was just mimicking my own words. But, all my heart heard was, “she used to be beautiful.” Translation: I am no longer beautiful.
And as I am writing this, I realize I perpetuate these stories. Because I don’t want to appear less than (or more than, in regards to my weight- LOL!), so I make excuses. I act as if I already lived my glamorous life. Or even more so, that given just a little more time, I’ll get back to my “old self.” “Just you wait and see!
But that’s not humanly possible. For any of us. Each day we wake up, we are a newer version of ourselves. We move forward, not backwards, in time (or so we hope!).
This attitude doesn’t just pertain to the ill. Comments like these are recycled in the media and in our communities as we disparagingly remark on the aging… a “condition” that occurs in each and every one of us, no matter how hard some try to stop time. We talk wistfully about our youth… our past selves. Or we make side-comments like, “Wow, she has really gotten old.” Or even worse, “What’s up with that grey hair; why doesn’t she color it or something?!” Like aging is something we should fix instead of celebrate.
And let’s face it; the majority of us don’t recognize beauty in ourselves in the moment. It’s only years later as we longingly talk about our youthfulness/healthiness, that we shower ourselves and others with high praise.
Looking at it in this light, who’s to say we’re not missing out on the beauty of our present selves, by keeping our eyes firmly fixed on the past?!
In a stunning sermon by Rev. Tina Simson on the topic of “Fat Ankles and Personal Dragons,” she states, “We do this often… make fun of our own bodies; we talk about them as if they are a distant relative we wished lived somewhere out of town.” She goes on to reflect, “Hidden just out of sight is my flawed self-image that is fed by our culture and its unattainable singular standard of beauty. But also, I know it is fed by me as I critique and doubt my own self, my strength and value… only because by body doesn’t conform.”
So, I realize that this shift in attitude towards those of us who have been “transformed” by illness (and all of us who haven’t discovered the fountain of youth yet) needs to start with me. I need to refuse to keep on feeding that dragon!
First, a note to the friends, family and caregivers of someone who is chronically ill:
It’s okay to reminisce, but try to avoid the words “used to be.” They only denote that we are no longer a whole person as we are… today. Try instead to recognize all the positive traits that you see in us, in the present. For ex, “______ amazes me with her/his strength and resilience.”
For intimate partners: look for all the things you still find beautiful about your mate. Tell your partner, tell others, and most importantly, tell yourself. We all miss things that once were, but by dwelling in the past, you’ll also be missing out on what’s right in front of you. Perhaps we don’t look the same as we did when you first met us, but what are the things that make you pause and feel lucky that we’re still together? Practice falling in love with me all over again.
• This may sound contradictory, but it is okay to also celebrate my beauty and strength of the past. Just, please don’t get stuck in the past. Perhaps marry a reflection on how beautiful I look in this picture from 8 years ago (or the career I used to have), with a complimentary comment about me today.
And for my part:
I will try to stop putting myself down; stop being a bad example of all the ways I don’t want you to act.
I will focus on all the ways I am a success today. I may no longer be participating in a daily, more traditional job. But I don’t sit on my laurels, either. I’ve reinvented myself and found ways to engage in my life, in new and different ways. I am an artist, a writer, an editor, and supportive wife, friend, sister and daughter. I am a survivor.
I will focus on one thing I love about myself, today. It can be an external or internal attribute. I will fall in love with myself again (or perhaps for the first time). Today I looked in the mirror and realized I love my hair… not only do I like my current haircut (hurrah!) and the thickness of my mane, I love what it represents. Just 4 years ago, I had lost 75% of my hair; it was see-through thin, stringy and kinky. But as my body healed from the trauma inflicted upon it, so did my hair. It is a shining symbol of my resilient nature. Give yourself the gift of celebrating the beautiful person you are.
I will engage in activities that lift me up instead of drag me down. Instead of sabotaging my self-image by trying on clothes I know won’t fit me, I will take a yoga class that reminds me of the beauty and strong attributes my body possesses.
These exercises are not only for the benefit of our own self-worth, it is an important shift in societal attitude we are all responsible for. Studies now show that girls’ self-esteem peaks at age 9 (!) and goes down from there and that 80% of children (boys and girls) at 10 years old are afraid of being fat. Let that sink in for a moment.
Together, we can start to re-shape the current mentality of our society. Let’s celebrate the diverse tapestry that makes up our world… all the different colors, sizes, shapes, abilities, ages, and gender orientations. Do we really want a “Stepford Society” after all?

More thoughts on body image:

Mirror Mirror On The Wall