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"Don't let your happiness depend on something you may lose." ~C. S. Lewis

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PostHeaderIcon The ghost tucked away

There’s a victory for me in every step I take. Figuratively too. It means my body is moving, I’m moving, forward. It’s more than that – it’s the part I never talk about. It’s the ghost that follows me around, sometimes standing right in front of me, daring me to acknowledge it. Sometimes it’s a forgotten ghost, far enough away that it’s almost – almost – hard to remember, to recall the pain. It’s the ghost of sarcoidosis. And the toll it took on my body. That I seemingly refuse to give over to.

It probably rears it’s cruel little head a couple times a week. That’s a lot for something I never talk about. But. It’s twofold for me – I really don’t think anyone wants to hear about it. And. By not giving voice to it, perhaps I’m also not giving power to it. But it taps on my shoulder, more than I care to admit. It lives with me. I live with it.

Sometimes it’s a glance at some “sudden” discoloration on my ankle. Red. Angry. And a distinct line around the ankle marking something, perhaps nothing, perhaps a former sense of pain, or the look of something to come. That’s where I worry. I see that two-tone skin and wonder – is it coming back? I shudder. And then I, for whatever reason, power forward and through and still go for a run, or throw on the heels or push it out of my head in some way. Or I’ll see a bruising that immediately brings to mind the start of it all. And the wary curiosity at the beginning of the venture. And that wariness of pain and confusion and unknown-ness lingers still today. Don’t go there, I tell myself.

Not interested in being stuck to the story. Not interested in having what happened be an albatross for the rest of my life. It does, however, inform bits of who I am today. And considering I never really addressed this episode or the subsequent episodes as clarified as I am now, this is an opening for me to do so. So this turning point in my life, it informs rather than strangles with it’s trembling hands.

And then there’s the knee twinges, hip throbbing. I don’t have runner’s knee. Never have. But I distinctly – and I mean exquisitely – remember what the pain felt like in my knees too. If I sat in a chair, it took me minutes, long minutes to stand up. My own mom drove right by me at the airport after I got off the plane last because I moved so slow, because while from the top of my head to my waist she thought it was me, she saw the legs below the skirt and said “those aren’t her legs, that’s not Gretchen.” So I feel my knees for that familiar swelling, the tender to the touch puffiness. Nope. They seem fine today. Ah, the hips – stretch them out and 99% of the time, again, all good.

How about the heart murmurs. I know this insidious disease attacks organs, and that’s the extra dangerous part of it all. So when my heart speeds or skips or thumps, I can’t help but leap. Ok, maybe I can help it, but the invitation is almost alluring to wonder. It’s almost like it’s testing me – is this it? How easily, how quickly does your mind go to that being a possibility? Or the headaches. My God, I cringe remembering the MRIs to check for lesions on my brain due to sarcoid. The fear squeezing tears down the sides of my face, pooling into my ears as if to protect me from the noise of the machine. Wanting to look away from the doctors and technicians, so as not to read anything into their facial expressions or try to read their lips.

So the headaches come and do their damnedest to scare me. Works sometimes too. I’m not a headache-getter. Had the migraines a bit in my teens, so I know the aura that shows up and the excruciating pain of a migraine. I’m also fully aware of the intensity of a sinus headache. So I know what kind of a headache I recognize. And there are times when a searing pain happens in my head that’s just plain unexplainable. And rocks me. Initially it’s just the pain or the suddenness and over-the-top feeling that rocks me. And then it’s that thought that permeates through the fog of pain. What if it’s back? What if it’s in my brain?

The seizure a year and a half after this all started didn’t help. At all. The fear rose up again and permeated daily life. Maybe I really am being cut down in the prime of life. Maybe I really am damaged goods. Maybe it’s ok that my closest loved one, my significant other, my life partner yet again looked at me like I was foreign, less than, to be tolerated. And the distancing, abandoning and judging began anew. And so I developed the ability to “bounce back” as quickly as possible, lest anyone ever finish walking out that door. But what of this seizure, what did it mean? Oh, I get to do another MRI? Oh, I get to find a new cardiologist because now we’re concerned it might be my heart? Are we going back to the beginning, when I ended up with multiple, scary, confused ER trips?

Ever spent a week in a hospital being passed around from cardiology, to dermatology, to pulmonology, to neurology, to rheumatology and God knows what other department? The stories I could tell. But I don’t want to be weak, to look back, to stay down.

My God, I’m so far opposite of a hypochondriac it’s amazing. Brilliant really. Sure, sometimes to my detriment but for the most part, to my glory of rising above, trusting the good and moving through things well. I’m proud of how I take care of myself, my health, my body. I could do a better job with my spirit and energy and heart soul but that’s another post.

And there’s the eye checkups every two years. The first time I went to see Dr. Collins post-diagnosis, I swear I could sense his own fear for me, his own trepidation as to what he might find on the tests. Again, the eye is an organ and sarcoid can attack there too. There was some damage, some stress crystals in the eyes from it but my eye health has generally stayed steady since. And yet, every two years I have to have my eyes checked just because of prescriptions and he has to do a special check juuuust to make sure. For some reason, I don’t like it. Makes me feel momentarily vulnerable again.

I chalk up all elbow and shoulder issues to sitting and writing and lots of upper body training for running, essentially denying my brain the chance to go down that road for those joints too, even though originally they were attacked significantly as well. Imagine forming your arms like a Barbie doll, and then not being able to move them just like her. Fun.

What about the sudden tiredness for no reason? That certainly accompanied the whole episode. Granted it was nearly impossible to sleep well with the inability to move without excruciating pain. God, the anticipation of pain in the mornings after laying in bed for a spell, and then the pain coming in faster and furiouser and ten times what I anticipated.

Have you ever burst into terrified sobs just from standing up, desperately grabbing for something to shift you, hold you up?

Ever negotiated with yourself to just go to the bathroom wherever you are or lay in a bed with a towel under you just to avoid standing and walking in the morning to the toilet?

Wished for someone to cut your legs off, please?

Stared at your legs willing your magical abilities to liquefy your lower extremities?

Ever googled peaceful ways to die, solely to escape pain you didn’t know was humanly possible to feel let alone endure?

Willed for the worst case scenario because then, at least, you’d have an answer and a path?

Ever spent every waking minute of your life for months on end in a state of panic, confusion, terror, ceaseless pain and overriding fear?

Tried to figure out how to make a deal to learn how to inject yourself with morphine if they ever let you out of the hospital?

Wondered if you were heading for a life in a wheelchair?

Mocked by your own friends because your body doesn’t follow a conventional path of routine expression?

Had your love and life partner tell you your body’s devastation, recovery and overall pain was hard…on them? That they didn’t want to take care of someone? Just weeks after you’re out of the hospital? Have them never again look at you as anything other than less-than (and wonder if perhaps they always did)?

And the lungs. The beautiful creatures they are. The compromised creatures they are. The every few years check up, the chest xrays that seem ironic to me (that many chest xrays I’m pretty sure is actually bad for you and they haven’t always covered up my vulnerable little thyroid, but I digress.) The pain I felt in them when running towards the end of 2011 in my quest to run 11 half marathons and the overwhelming concern of “it’s baaaack” in my head and my family’s minds, and my pulmonologist’s mind. I walked away lucky, with just an albuterol inhaler. Even that messed with my head a bit. Could my body be trying to say something to me again? How much do I listen? When do I stop to understand and when do I push through? The bronchitis in February this year. Scared the crap out of me. Could my lungs handle it? Sure, of course they could. And. Would they sustain damage? Would I become one of those people where every cold turns into bronchitis? What about my immune system in general? Can it handle colds or flus like other people? Stronger? Not?

Ultimately, I choose to believe my immune system is stronger than ever and frankly, above average, it can handle whatever comes it’s way because of what it’s already dealt with. And that belief understandably occasionally wavers. When I get three colds in as many months. Is my immune system crashing? Are there holes in the foundation I’ve built, the hardscrabble way I rebuilt? Is there a breakdown somewhere that I have some control over? Is it ok to even acknowledge this years-ago-now event as the piece of me that it is, so long as I keep the fence strong around the rabbit hole?

So I carry this with me. This occasional fear. And when I add it all up to record it here, it does feel heavy. And annoying. And scary. In fact I just swallowed a lump in my throat as I wrote that. It’s the part I don’t talk about, that I don’t share with anyone (until now obviously.) I have never known how without sounding like I’m being negative or hypochondria-tic or looking for attention. Or asking for something bad to happen. Borrowing trouble. I know full well that the more auto immune diseases your body fights, the more “likely” you are to be diagnosed with cancer at some point in your life (makes sense if you actually think about it.) And I’m up to three, that I know of (based on other various health issues I stubbornly pushed through, I suspect it’s more.) And. I trust the good. The perseverance is not something I take lightly. It really truly means something.

Maybe I don’t talk about it because I know full well the judgement people have about someone being less-than during and after some kind of disease. Maybe that’s why I push the running the way I do now. Maybe it’s not true I’m only trying to prove something to myself. Maybe a few percentage points are to those who judge/d me, those who never took time to understand or walk a mile in my shoes, or those who simply gave up on me in the midst of it all and never found a way to be ok with me again. Maybe I don’t want anyone else to leave or judge or dismiss. Maybe I’m trying to prove that no, I am not damaged goods, I am capable of living and having a full life. And then some.

Maybe I jump out of airplanes to feel the aliveness I get running. Maybe I get inked up like I do because the initial pain of the process still pales in comparison to the can-still-catch-the-emotion-in-my-chest-remembering-it pain. Maybe I live my life the way I do now because I know at any second everything can change profoundly, that to live fully alive I have to feel it all, experience the depths of the journey and earn the authentic joys offered up.

I don’t know. I do know I won’t ever give in or give over to the fear or to allowing it back into my body. It’s clear to me that my body was screaming at me to wake up, to rise up, to gather love but I stubbornly refused to listen. And I paid a very serious price for it. So I won’t allow that part of my journey to sidetrack me to feeling sorry for myself or beating myself up or fearing that I’m not enough. If anything, I can honestly say I thank the universe for reigning down the destruction of sarcoid onto my body in such a violent, painful, acute presentation. It’s led me to where I am now.

A body-confident healthy strong woman. The strength in the spirit as much as the body. Who’s overcome a lot and has some serious big hairy audacious goals laid out in front of her. That require her to step into herself, show up fully and let the light shine brighter than ever. And so, I say, I see you little ghost, I know you’re there, but you don’t get anymore power from me than that. The scars – internally as externally – you left are beautiful in a sense, I’ll take them as a peaceful sign of respect of where I’ve been, not the fear mongering that taps my shoulder. And I truly see the reminders, and I can certainly feel them. But the line in the sand is drawn. You cannot cross it. Stay on your side, I’m staying over here. Where it’s bright, warm and empowering. And when you understand that, I will then ask you to step into my shoes and I will put my arm around your whispering shoulder, embrace you and together we will make all these dreams come alive bigger and better than we planned.

So if anyone wonders why I run, there you go. Bam.

Sure, I’ve told the story countless times about how the doctors told me I’d never run again and that’s my motivation. Yes, if I were singularly seeking a petulant defiant way to respond, that would be it. It’s not just that. Not by a long shot. Of course, I am one of those people who responds to being told what I can’t do by showing that I can. Every personal trainer I’ve ever worked with knows this about me, celebrates it, tests it knowing full well when they tell me to stop at 12 in a set, I will look at them and push to 15 to finish it out. It’s bigger than all that.

Also known as: I run because I can. Because my body allows me to. I run to feel, to feel alive, to feel joy. Every step is a treat. It’s the gift that keeps on giving. That’s why there’s so much gratitude in my running. Not surviving, thriving.

I run. Because I can.

(this is by far the hardest post for me to hit the publish button. wow.)

13 Responses to “The ghost tucked away”

  • Nancy Voogd says:

    Gretchen! Bless you for showing up so fully and so honestly. I consider myself a pretty good friend of yours, and I had no idea the depth of this, so I am grateful to be able to better understand you and how you tick. I’m so proud of you for actually sitting down and writing and then pushing that publish button. Beautifully written, beautifully told. Thank you for allowing us a glimpse into the miracle that is Gretchen.

  • Dana Kennedy says:

    WOW! What an inspirational post. Thank you for hitting that send button and posting. There are some places in this that “I totally get and relate” I had a visit with death when I was 5. 106 temp, turned to a heart murmur. I started swimming and reversed it but I was never “released” so it was always part of my medical history. You want it in the past but always wonder when it will pay you a visit.
    This also reminds me of Helene and running across the country with cancer but chose to keep running and complete her dream and she is now cancer free.
    The human spirit is strong and powerful.
    Keep writing your future…don’t let your past write it for you. You are and inspiration to many and that can be a burden.
    Keep running and inspiring but always take care of you!

  • Al says:

    Well.

    As if I didn’t already consider you wildly amazing — now I read this.

    And knowing so much more about you and your life — your hardships and your victories, and what you endure on a daily basis — only adds to the love I feel for this friend.

    HUGE hugs to you, Gretchen. Thanks for sharing. And Merry Christmas to you.

    Keep running.

  • Sandy says:

    Gretchen…your voice so needs to be heard. Thank you so much for allowing us to see into who you are. It makes us fall in love with you once again. xo

  • Kathrin Ohle says:

    I LOVE the way you write, Gretchen! It’s so you and so unique. You have a niche, baby! Thank you so much for sharing this!!

  • Marc says:

    You know I’ve always found you to be a prodigiously impressive woman, Gretchen.

    Now I’m REALLY impressed. You’re amazing.

  • Josh says:

    Gretchen, it is apparent that your readers know you at least a little bit, as none are surprised at the feelings invoked by this post, but we are all further impressed with you.

    Sarcoidosis used to be some weird diagnosis I only heard of on television or read in a book. Knowing how abnormally it can manifest itself in humans makes your triumph even more powerful. People who go through drawn out physical illness know that it never leaves you unscathed, and even more so, that scathe is usually to our detriment. Your conscious choice to give your Achilles’ heal the Gretchen middle finger and triumph in defiance is an inspiration.

    May we all try and and listen to the cliché that sounds soo annoying sometimes, and truly remember that what doesn’t kill you really can make you stronger. We just have to decide what we are going to do with what is presented to us, and may we remember that it really is possible to overcome the obstacles that at times seem to be our demise. Thank you for sharing.

  • Kathy Pendleton says:

    I was blown away at the power of your words. Thank you for sharing at the level of intimacy and revelation you brought forth. Wow! Knowing you, without having much detail, the post clarified some areas. Beyond that, it opened the depths that you’ve triumphed over and are continuing to triumph over every day.

    Congratulations on your writing and your self-examination. It’s so beautiful and so are you, inside and out.

  • Evelyn says:

    You truly are a great example of understanding the power of thought–you don’t give in to the negative that tries to lure you back into fear and pain. You really have come so far, Gretchen, and you are a beautiful shining example for all of us — how to keep on going and not let those ghosts and old stories entice us back into the shadows. You run, girl! xox

  • Heidi says:

    Gretchen, thank you for sharing. You are an inspiration!
    Your challenges in life are real, and you are strong, compassionate, powerful, intuitive, caring, generous, and so beautiful. I am honored to know you and watch you grow and evolve, despite it all!
    I wish I could run like you, but my knees say no way, so I find other ways. The trails is where I’m happy, trails with trees 😉
    I love you!
    Time to get together already!! xoxo

  • Michelle says:

    Thank you so much, Gretchen, for taking me down that path with you. As I read your fears, the pain and the emergence of your strong will to live and to thrive I went through myriad feelings. I was scared with you, I was proud of you and for you, I felt gratitude for the things you’ve learned and the person you’ve become and are becoming.

    On my own journey, I’ve experienced some “doozies” for lessons, and you’ve reminded me that the pain, the fear and uncertainty as well as the overcoming, they are all blessings. They are gifts to us, if we decide to accept them.

    Thank you for that. Thank you for being remarkable, wonderful YOU.

  • Chris says:

    Gretchen, truly, wow! The way in which you write of this pain is so very powerful and authentic. I had no idea the depths to which this effected you and of course I never asked in fear of bringing up a subject you didn’t wish to relive. The way in which it has held you in fear, the anticipation that at any moment it could return . . . I’m just beyond words. It made me want to embrace your very being and do my best to shine love and confidence onto the uncertainty. Your words have made me consider how many people I know, in my life, who have been through cancer or another disease that live with this ghost constantly at their side. It makes me feel like my approach of not asking for fear of upsetting may be an ignorant one to take. That perhaps, much like you describe, these warriors don’t wish to acknowledge the ghost for fear of giving it power, but maybe they actually need to acknowledge it in equal parts . . . only no one ever asks after the “goal” is achieved. We give such grand words, “conquered”, “survivor” to people as a form of closure perhaps more for ourselves, to give us permission to move on and boast of the accomplishment that we fail to realize may be happening over and over again, every day, as they continue to conquer or survive the residual emotional effects left behind . . . the ghost.

    Thank you for showing up so raw, so honestly.

    “And so, I say, I see you little ghost, I know you’re there, but you don’t get anymore power from me than that. The scars – internally as externally – you left are beautiful in a sense, I’ll take them as a peaceful sign of respect of where I’ve been, not the fear mongering that taps my shoulder. And I truly see the reminders, and I can certainly feel them. But the line in the sand is drawn. You cannot cross it. Stay on your side, I’m staying over here. Where it’s bright, warm and empowering. And when you understand that, I will then ask you to step into my shoes and I will put my arm around your whispering shoulder, embrace you and together we will make all these dreams come alive bigger and better than we planned.”

    The world needs this. The world needs you, Gretchen. I love you. 🙂

  • Debrah Kemp says:

    Wow! Your honesty is refreshing!! You have told me about your illness but you never really harbor on the magnitude with which it affects your life. Most people with half the physical issues would have curled up in a ball and given up. Your tenacity and resilience are awe-inspiring!!I feel sooo blessed to have a friend like you in my life!!

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