Why I Write.

This post was written for the current PFAM blog carnival, hosted this round by Sharon at Bed, Body, and Beyond.

I have been avoiding writing this post. No, scratch that, I have been avoiding writing. Period. I could say this is because it’s the end of the semester, that I’m busy with teaching and editing and advising. I could say that I’ve been busy preparing for the holidays, that I haven’t been home much. But none of that would be entirely true.

I have a Flannery O’Connor quote in my profile that reads “I write to discover what I know.” And right now? I’m avoiding writing because I’m afraid to face what I already know. I never wanted this blog to be only a place for me to whine and complain, and I feel like lately that’s all I’ve been thinking about. I’ve been moping about all the things that illness has taken from me. Because the truth is that despite a few good days, the past month has been immeasurably difficult. And part of the difficulty comes from the fact that I persist in the charade that I am still as able-bodied as I ever was. When I’m not.

As the holidays approach, I can’t help but think about all the things I used to do that I can’t do right now: crochet and knit, hand-make holiday cards, roll out cookies and pie crusts, stand in the kitchen cooking and baking all day, making preserves and candy and sauces to give to friends and family as gifts. I have always shown my love with the work of my hands. I hope that there will be a day in the future when I can do all these things again. But I don’t know that. Because my desire to do those things can only take me as far as my body’s new limitations. And to be truthful I feel physically worse right now than I have in a long time. I’m frustrated, I’m sad, and I’m struggling to be hopeful. I knew all that already, but it still stings when I type it out in the little Blogger “new post” window.

I’m not very good at asking for emotional support when I need it. I don’t like to be seen as needy, or melodramatic, or weak, and so it’s hard for me to reach out. I suppose this blog is my tiny way of reaching out. Extending my life and my empathy in the hope of multiplying the amount of care I am capable of both receiving and giving.

Tomorrow I see a new rheumatologist and continue this convoluted journey of diagnosis and treatment.  And I will continue to write about it. Even if my insights about myself and my life sometimes sting. Because ultimately I write for you: young, old, newly diagnosed, undiagnosed, long-diagnosed, wise, innocent, happy, sad, hopeful, disabled, able-bodied, brilliant, contemplative, compassionate you. Thank you for being my reader. You help me to know my self and the world.

No matter what these illnesses take from me, they will not take my ability to think and create in some form. No matter how fast—or slow—I type, it’s still always one letter at a time.

5 comments

  • Displaced

    Megan,

    your post is beautiful. It resonated with me; it touched me. I really hope that ‘we’, the readers on the other side of the screen, can give you some of the emotional support you crave. I know that you are giving to us via your own posts and via your comments on our blogs. We are a community and we are there for each other in ways that others can never quite understand.

    Lovely piece!

  • Sharon Wachsler

    Megan, thank you so much for writing and submitting this beautiful post for PFAM. I love your vulnerability and honesty in asking for support. I do so much hope that you get what you seek. And if you do not get enough, I hope you will keep asking. That has been a lesson I’ve been learning of late; I’ve been surprised by how eager so many people are to respond. I wish the same for you.

    Also, fyi, I have a friend who is a visual artist (abstract photography) who is thinking about using a blog, and I showed her yours as an example of how visually appealing they can be. She loved it.

  • Never That Easy

    Megan – I understand so much of what you’re talking about here. Sometimes when I open up that little window, and think of writing about something else that my illnesses are impacting, I just press the little x and tell myself I’ll try again later. Writing is sometimes the bravest thing I do on any given day, and I think you’ve captured why, just exactly.

  • 1artsychick

    Everyone with a Chronic Illness has times they feel like this. I do right now. Surgery 3 weeks before Christmas…that takes 6=8 weeks to recover from..yeah, I feel like bitching…a lot.

    But that’s ok…that’s what part of our blogs as health advocates should be. We should let people see the bad side, let people who read your blog who don’t have lupus…understand what it’s like to go through what you are going through. And at the same time…get the support you need from those of us who understand what it means to be sick and tired of having our lives stolen.

    Keep writing. and let us support you.

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