Tag Archive | survivor

Hope Heals The Way…

Hope-is-like-the-sun

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

Stuck in What I “Used” to Look Like

i-am

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

 

 

The Gift of Illness: A Re-Invention of Self

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

“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!

Mirror, Mirror On The Wall…

...who's the fairest of them all?

…who’s the fairest of them all?

There are two people in the mirror looking back at me.  I see the me of years ago… before the surgeries, before the Predinose weight, before this illness ravaged my once beautiful body.  I see my once graceful curves, full breasts, sinewy muscles.  I see smooth, unblemished skin.   I see a face graced with high cheek bones, and my crowning glory, a mane of hair that honors my Leo birthright.

But then I glance away, only for a second.  But a second is all it takes. And the veil is lifted.  Now looking back at me is this Rubanesque form, filled with mars and scars. An abdomen curved gently into my once proud hip bones is now a patch work of put together pieces. My belly button is all but lost amongst the vertical scar that tracks its path from my sternum to my pubis. There are angry slash marks running across my belly, scars and “striations” chasing each other, competing to see who will get to the other side first.  My hip bones are now buried beneath a belly that no longer has any abdominal muscles (there are only so many times you can cut through connective tissue before it no longer knits together).  My face reflects the “moon-ism” of long term Predinose (*steroid) use; the oval shaped now rounded and puffed out, making my eyes and mouth appear small and timid.  And my once straight, full hair has agreed to join the revolt, each day becoming curlier and curlier.  Which would be a nice change, right? Except that it is only curly in the certain areas on my head!?!

So which woman is the “real” me?  I walk proudly like I am still the woman that was once told should be a model (and, of course, never believed at the time! Sigh.).   But then I see myself in pictures and I wonder in shock, “Who is that bloated version of me?  Must be the angle right? Or the lighting?  Something?!”  And all I want to do is cry.  Weep for the person I was and have lost.  For all the things illness has stolen from me: years lost; weight gained; my dignity, my self-esteem, my sexuality.  My identity.

But, wait.  That would be saying my entire identity was wrapped up in my external looks.  And it never was; that’s why I also didn’t see myself as “model material.”  I walk proudly because of my internal strength and light.  Which leaves me even more confused than before; I still don’t feel like my insides match my outsides.

It’s hard not to let invasive, ill-thought out comments from well-meaning friends become ear worms.  Wriggling themselves into my brain only to be repeated over and over again.  Statements such as: “Oh, wait until you see her when she’s all better, loses the weight and is back to her ‘old self.’”  And, “Gosh, you were so beautiful.”  Or, “You don’t ‘carry yourself’ like an overweight person.”  What the heck is that one supposed to mean?

And, perhaps I don’t carry myself like “an overweight person.”  And I’m glad.  Because my first instinct when I rapidly put on all this weight (*) was to bury it under loose fitting clothes.  But that approach only made me feel worse.  At least when I put on a flowy maxi skirt and colorful top, I feel more like my true self. I am no longer trying to hide myself anymore.  I try to counteract all the negative feelings.  I use positive self-talk. I remind myself that the same scars that have patched me into pieces saved my life!  I was once proud of that vertical mid-line scar, calling it my life line and the rest, a road map to Survival.  I’ve started using a body-image technique post shower that a friend shared with me.  First off, I stay naked as long as I can and then I apply lotion lovingly to each part of my body, thanking it while I do so (“Thank you, feet, for supporting me; I love your beautifully painted toes!,” etc.).  I put healthy food into my system and ride my stationary bike and/or walk everyday (unless bedridden).

All these approaches are positive and important.  But, while writing this painful post, I’ve realized that this is not the most important step in my self-image recovery:

I need to focus on my insides.  To recognize that I was out last night and was approached by half a dozen friends who interrupted my conversations, just because they didn’t want to leave without giving me a hug.  These women genuinely told me how beautiful I looked.  And all of that was not in response to weight, or smoothness of skin; it was in response to my inner light radiating my outer self.  The same light that always made me appear “beautiful.”  People respond to me not for what I look like, but for whom I am.  And if I let the negative thoughts override all of this, I will close myself off like a clam shell, turning inward in a protective pose.  When one is on the defensive, they are no longer approachable.  And that has always been one of my greatest gifts.  I refuse to let this illness take that away from me!  I will not give it that power. 

I am a beautiful woman. An Amazonian Goddess, whose perseverance and tenacity have given her the fortitude to win many a battle.  I radiate with the stunning light of my Soul Beacon that transmutes Hope and Positive Energy to others.  People are attracted to me for who I am. And, if I really want to think about it, illness has only strengthened these qualities in me, certainly not stealing any of them away!  It’s okay for me to mourn the pieces that have been stolen from me and my life.  But after mourning, comes a Celebration of Life… a celebration of the life I live today, of the woman I choose to be.

 

*MORE INFORMATION ON THE SIDE-EFFECTS OF LONG TERM PREDNISONE (STEROID) USE:

Outlines all the (ill) effects of long term or high dose usage (weight, hair, striations- the whole gamut!).  For me? Went right down the list. Check, check… and, check!

http://www.hopkinsvasculitis.org/vasculitis-treatments/prednisone/

Summary:

http://ibdcrohns.about.com/od/prednisone/f/predweight.htm

Discussion board with testimonials on individual’s experience with Prednisone induced weight gain:

http://arthritis.about.com/u/ua/prednisone/prednisone_and_weight_gain.htm

Feeling My Feelings: I Can Be Both Strong and Emotional

Image

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?

Let Your Inner Freedom Ring!

On this Independence Day, I am choosing to celebrate myself, my gifts, my strengths, and the freedom from the tyranny of my own tangled thoughts . . .

  •  I do what I want to do, not what I think I “should be doing.”  If I want to paint, I paint! If I’m tired, I nap!  If a friend calls for an impromptu lunch, and I am physically able, I go!
  • I no longer pretend to be “okay” just to make others feel better.  I know my illness can make others uncomfortable (no one wants to see a loved one hurting) but if I’m in pain, I say so.  To thine own body be true!
  • I communicate my own wants and needs.  I no longer hope others will “magically guess” what I need in any given moment.  If I don’t know how to express what I want, how are others supposed to figure it out?
  •   I advocate for my own well-beingIf a doctor isn’t fully listening or fully engaged in my care, I find a new one.
  • I am flexible and adaptable!
  • I choose to always find some glimmer of positive even in the most dire of circumstances.
  • I choose gratitude over “grumpitude!”
  •  After being given a 10% chance of surviving the night, and waking (alive!) on the morning of 3/20/07… I never, ever take a day of life for granted!
  •   I am the annoying friend who is always stopping mid-sentence to point out a rainbow,the way the clouds capture the light just so, a hawk sitting roadside,… and I love this about myself!
  • I live fully in the moment and encourage others to do the same.
  • I have a deep understanding and empathy for those going through life’s challenges.
  • I value the friendships in my life and am a good friend and confidante in return.
  • I take risks because why shouldn’t I?  This may be the only chance I have to experience something new and I don’t want to miss out on a single opportunity.
  • I don’t know how I’ll feel tomorrow, so I live in the Today.
  • I don’t wait to do things on my Bucket List!
  • I don’t shy away from an activity or trip, even if special arrangements need to be made to accommodate my “unique needs.”
  • I have an inner strength and will to live that I am deeply proud of!
  • I walk tall… celebrating the Goddess within me!
  • I find purpose in spreading HOPE to others.
  • I love to laugh and find keeping a smile on my face makes everything a little brighter!
  • I am a Survivor! (every scar is a roadmap, outlining my remarkable journey to live!)
  • My life is never dull!  And that’s pretty, darn cool (not many have such a complex “life story” at such a young age)!
  • I don’t take my anger or sadness out on others!
  • I am a constantly evolving woman… I keep re-inventing myself!
  • Just like our forebearers, I take a chance on living a life that may be difficult and tiresome… The rewards of living life in any way are worth the sacrifices!
  • I love watching fireworks! And even if I am too unwell to see them in person, I can always catch a good show on T.V. (Go Boston Pops!)
  • I am grateful to be alive today, to celebrate the FREEDOM that we all deserve!