Archive | May 2014

Dear Life…

hug you well

Dear Life,

You have been unpredictable and you always keep me on my toes.

At times, I even dream of trading you in for a newer, shinier model.

I can develop “life envy” when comparing mine to others around me.

Sometimes I want to scream, “What the heck is the meaning of all this?
“What is the purpose of living a Life such as the one I’ve been given?!”

But, in the end, I always come back to the same answer…

THIS is My Life and I wouldn’t trade it.

I wouldn’t want it taken away from me.

I wouldn’t want to be robbed of the chance to live it.

And, then, Life, you’ll throw me another curve ball.
Like the one that was lobbed at me yesterday…

Time for another emergency surgery,” Life reminds me with the insistent alarm that keeps going off in my side. This time, the snooze button does nothing to delay this scheduled appointment with My Life.

And I am reminded, “Tam, just because this is the hand Life has dealt you, doesn’t mean you have to play it alone!

So I reach out to others.

Some surround me instantly with Love and Support.

Some even put their own Lives’ on hold for a bit, to help me navigate mine.

But I also discover that many, the ones I most need and crave right now, are so used to Tam’s Life, that this is just another regular ol’ occurrence for her.

No need to worry. Don’t be alarmed. We’ll just go on with our Lives and pretend that everything is just fine.

And they’re right, I am used to a different quality of Life than most.I have had to catch these fast balls many previous times.
And in the end, I’ve always come back swinging, “Watcha got next for me Life? Huh? Huh?!

But, what if this is The End, Life?

What if I’ve already played out my 9 Lives?

Just because I’ve gone through this before, doesn’t mean I, too, don’t battle the arch-nemeses of Life; Fear, Anger, Hurt, Insecurity, and Loneliness.

If anyone else in my circle of family and friends was facing a similar uncertain future, we would all drop everything to be by their sides, to Fight for their Lives.

Yesterday, when I was signing my release for surgery, the surgeon was going over the four long lines of possible (and many, probable) risk factors involved with this procedure. The last two were: “Heart Attack” and “Death.” And you know what he said, Life? “Well, you’ve already had both of those, so you know the risks involved with these complications.” Chuckle. Chuckle.

BOTH of those? Meaning “death,” too.
And, you know what, he’s right.
Because I have not only met my Life, I have also met my Death. Twice.

So, is this supposed to make me feel less scared?
Because it doesn’t.

Yet, when I inform my closest loved ones of this impending, very serious and complicated surgery, happening in just 2 days’ time, they respond, “Okay.”

Okay? Isn’t that what you say when you let someone know you have to reschedule lunch because you’re having a tooth filled?

But, that just highlights how insanely crazy You are, Life. So insane, that insanity begins to appear as normalcy.

And, yet, I still wouldn’t trade you in.

I want to keep living you, Life.

I still have uncharted parts of myself and the world that I want to explore.

I still have so much love, light and energy to give to others.

And I still have a great big capacity to receive that love back.

As I write you this letter, I sit outside in the waxing and waning sun. Watching as it plays hide-n-seek with the clouds. I listen to the one of a kind bird song symphony, never to be repeated at any other time nor in any other place. A unique crescendo of my backyard birds, a concert for one.

I listen to the traffic coming and going on the expressway behind my house. And I dream of where they are headed. I dream of where I next want to go.

I can feel the soothing, loving presence of my husband as he gets ready inside. The one person who has born witness to the all of you, My Life. And never takes for granted the extreme pressure I am under…

I am constantly pushing you up hill. But, I am up for the battle.

I do not planning on meeting your shadow self, Death, again for a long time to come.

But, I also know it is not solely up to me.

So I’ll make a deal with you, Life…
Don’t give up on me and I won’t give up on you.

Love,
Tamara
aka: HopeSpirit

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Listening To That Intuitive Knowing

my story

So, you keep telling the doctor, “Something’s wrong.” And the doctor responds, “I just don’t see anything conclusive on your tests. It’s probably just… referred pain/muscle pain/arthritis/ adhesions (scar tissue), etc. etc.” And you say, once again, “No. Something is wrong. The pain is intense at times, and it’s different than the myriad of regular pains I deal with every day.” “Hmmm. Well nothing I can pinpoint. Sounds like intermittent constipation” But you know. You live in this body every day. You are not malingering or unnecessarily complaining. Yet this very judgment often keeps you from going to the doctor until the situation is unbearable. You know about accepting every day pain that many others don’t deal with. This is different.

So you’re faced with either: letting the doctors wormhole their way into your brain, making you question your intuitive sense. You may start think, “Well, I guess I may be overreacting. The doctors know best right?” But, there is that small insistent voice that grows more and more persistent, “Don’t let the doctors question yourself! You know your body better than anyone else! Every time you’ve said something ‘bigger’ is going on, you’ve been right!” Time for option #2: putting on your “Self-Advocate Hat” and getting to work. Be the squeaky wheel. Not allowing yourself to be a push-over. Keep insisting on further tests until you uncover the true source of your pain.

So you push and you push and lo and behold, there IS something wrong! Alas, something pretty majorly wrong. And now you start to think, “Hmm. I don’t know if I wanted to be right after all! Maybe denial wasn’t such a bad place.” Because now reality is smacking you straight upside the head. This pain will no longer be ignored!

This is the story that most recently played out in my life. I have had an intermittent pain in my upper right abdomen, right below my rib cage. At times it doubles me over, almost knocking the wind right out of me. But then it will quiet down, and I wouldn’t hear from it for a while. Starting about 6 weeks ago, it would no longer be ignored; the persistent and at times intense pain demanded attention. Hence began the above journey.

I started to question my own intuitive sense. I started to acquiesce to someone else’s opinion about my body. I almost didn’t seek out additional evaluations because I didn’t want to appear as someone who over-reacts.

Where does this irrational fear come from? I know I am not alone in this experience. A dear friend recently encountered similar resistance when she was sent to the ED to get treatment for an urgent condition. Hearing just one voice naysay her doctor’s advice was enough to make her shut down. Enough for her to push on, to work beyond what she should of being doing in her current state. Enough to keep her from calling the doctor when her symptoms flared again.

And I am intimately familiar with this self-conscious resistance. The advice I would so freely give to another, the concern I would have if they were experiencing similar symptoms, the nudging I would provide to encourage them to call a doctor asap… are all compassionate techniques I seem to reserve for others. Not for myself, heaven forbid!

Why is that?

Why do we joke that men will never let their ego stop and ask for directions, when we, females, are just as guilty when it comes for asking for help with our physical bodies?

This stoicism doesn’t serve us. It inhibits are well-being and our ability to fully be there for others. And most often, the end result is an exacerbation of the (physical or mental) situation, because we did not seek help or treatment in a timely manner… we blatantly ignored our intuitive voice.

And all of this is reinforced by society. How many stories have we heard of doctor’s dismissing women’s chest pains when they go to the ED, being told,:”you’re too young/the wrong sex/ too healthy to be having a heart attack… must just be indigestion.” Even in the face of irrefutable studies showing that heart disease is the number one killer of women!

I have already had a near-death experience (truly) due to listening to a doctor tell me that there was nothing wrong… again, the phone diagnosis was that I was constipated (what’s up with that?) and just needed to take a walk. When, in fact, my colon had ruptured and I was septic… and dying.

I now know what is happening inside my body. And I know when something is awry. Now I just need to trust myself. And, even when it is challenging, be my own advocate… push, push, push until I get the care I need.

So, here I am, today, waiting on an appointment with my surgeon on Tuesday to discuss removing my gall bladder. That pain that was “just constipation”… is in fact a large gallstone that appears to be also effecting my liver (hence the lovely cankles I have been sporting as of late!). And if I hadn’t insisted that the doctors keep looking, I would have found myself much worse off. Of course, I am not thrilled that there is something so serious going on. But with knowledge, comes power. Now that I know the source of my pain, I can focus on the treatment for my pain.

I encourage you to take a few quiet moments today and “listen” to your body.

Is there anything that has been lingering, nagging at you mind, that you’ve left unattended? Is it time to ask the doctor about that pain/ache/different sensation or symptom?

Have you held back from telling others how you are really feeling for fear of being judged?

Are you experiencing anxiety, worry, stress, sadness that you are trying to keep bottled up inside?

Or perhaps, it’s something more positive, but just as secretive. A voice in your heart that sings the song of your dreams… a wish left unfulfilled for fear of disappointing or stressing others; of taking time to feed your own needs for once instead of everyone else’s?

What are these intuitive thoughts telling you?

Do NOT ignore them.

They are the essence of your being.
And they are meant to be listened to… by yourself and others!

On Behalf of All the Un-Mothers…

no-children

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.


 

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.

 

 

Hope for the Hopeless

hold-on-to-hope-header

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?