Posted by: alegra22 | November 13, 2013

existing

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Last night I had one of my shark dreams. The waters were aqua blue and the sharks were single minded, bursting up through the surface of the ocean, torpedoes with open mouths and rows of multiple teeth. At first, I was filled with terror and confusion, but then I became distanced from the dream, observant. I told myself, “You don’t have to go into those waters, just rest.” And for the first time since I’ve been having these dreams, I felt peace. I wasn’t afraid. I woke up and wrote my morning pages and once again circled around the idea that came to me in this last year that the sharks in my mind have never been predators but protectors.

Here is what I want to say with the precise burst of a shark hitting its target:

I’ve been living with chronic fatigue syndrome since I was fifteen. I’ve had multiple bouts of glandular fever. I’ve lived with chronic bronchitis for over twenty years. I’ve been in denial about all of it.

I’ve hated myself for these weaknesses. I’ve battled against living with something that can be so easily dismissed, that hasn’t received an accepted role, in the same way I’ve battled against the person that I am, the writer that I am, because it takes a streamlined courage, a faith in my purpose, and that is the scariest thing I’ve ever asked of myself.

I’ve also lived with inappropriate sinus tachycardia, anxiety, and food sensitivities that have translated into ‘food comas’ if I eat anything with the hint of corn in it. Corn farts on my food, I eat it, and pass out.

I am that person that has to say to others, “Sorry, no, I can’t go out and eat with you.” Or, “I’ve brought my own food, please don’t be insulted.”

Of all the dysfunctional things I’ve done in the last twenty years, the root of most of these things can be found battling against accepting myself as I am, and that whether or not I believe in it, I do have a purpose on this planet…or I wouldn’t still be here.

When I met Dan, it was the first time in a long time that I believed there was a purpose to my life. But even then, I was afraid when he discovered how weak my body is, how limited my energy, he’d feel ripped off for falling in love with me. We were so close that it didn’t take long for him to see the way I’d push myself and then collapse. Before Dan proposed to me, I told him that I was afraid of having children because I couldn’t provide for my own body. Dan told me, “I don’t need you to provide. I just want you to write and spend your life with me.”

About eighteen months later, I became pregnant with Sol. I was terrified. I was so exhausted that I’d find myself at the university library unsure if I could make it out to the parking lot. I looked for corners to curl up in and tried not to hate myself for challenging what was obviously a fundamentally flawed body with the sacred task of creating new life. I believed that what was in me was more important than what I was, and that was enough to keep  moving forward.

After Sol, I gave birth to three more children (we lost a baby at thirteen weeks) and this was my source of courage in each pregnancy, “If this kills me, it’s okay, because I’ll be bringing more of Dan into the world, and I’ll have served a purpose.”

I need to say these things unfiltered. I need to be honest in a new way. I need to be able to say upfront: this is who I am.
I need to claim it because this has been my story.

I can’t work a job. I’ve tried so many times. And because I couldn’t do that, I thought, “Hey, I need to write a commercial novel so at least I can contribute to my family in some way!” That didn’t work. In between a failed attempt at writing an airport paperback and pushing myself through one illness after another, overextending myself, collapsing and compartmentalizing, waiting to earn my way to permission to be what I am…I came to this last Sunday and said, “I surrender.”

This is who I am:
I run a 99.3 temperature most days of the week.
I can’t eat any packaged food. I can’t go to restaurants. If I eat the wrong food, particularly anything with corn in it, I’ll go into a sort of ‘food shock’ and pass out.
I can’t dig or saw or do interval training. I can’t do anything that creates a surge of force through my body or I’ll suffer for days, probably weeks after.

I’ve struggled with these limitations.
I hate that on the outside I look perfectly ‘fine’.
It causes a strange sort of shame in me when people try to fix me with supplements or recommendations. It makes me feel lonely and unseen. I’ve been researching all of this since I was a teenager. I’ve been braving doctors and tests and putting together a mosaic of answers, but ultimately, I’m realizing this:

I need to exist.
I’m not just a vessel that three beautiful children came through (although I would’ve gone to God proud of the job I’d done giving birth to all of them).
I’m not a parasite.
I’m not crazy.
I’m really, really tired.
I have been for a very long time.
And it is okay.
I need to be in honest dialogue about who I am.
I need to be able to write about my journey with chronic fatigue, and not about ‘curing’ it, but living in relationship with it.
When it comes to my health, I can’t summon the beam of light and burst of energy I have over the years because I was afraid of showing others how fundamentally fatigued I’ve been…because I want to be a contributing member to my tribe.
No, I can’t bring home a salary. No, I can’t do a thousand things in one day.
But I can do this:
exist.

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Responses

  1. You exist in a most beautiful way.

    • Right back at you, my beloved

  2. You are:
    Perfect, just as you are
    An inspiration leader (yes I quoted bring it on)
    A shoulder to cry on, prop up, lean on (depending on alcohol levels and emotional state)
    A woman who can pee standing up- Its true folks I’ve seen it….
    Unlimited in imagination and love
    An amazing human who accepts others for their own foils

    You exits in a plane that some of us can only imagine exists
    We (and I know that there are others out there) accept you for being you and because we know that you accept us.

    Never give up
    The only thing that HAS to be done each day is breathing! (its kinda important)

    Love you
    V

  3. exist… in a plane…

    • I love you so, so very much. You’ve been a rare and beautiful flower of strength and support, Vanessa. More so than you will probably ever realize (until we are partying in the afterlife)

  4. Oh Alegra ~ I hear this so entirely. You are not alone. You are not crazy. You are incredible. Brave. And an amazing writer and mother and partner.

  5. I think you already know how strong you are. It takes a brave person to share their “limitations” with everyone. I could throw other cliches at you, but you know how much love and support you have from friends and whanau. I’m sure you’ll be around to see your great-grandchildren for sure 🙂


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