Friday, December 17, 2010

A big, wallowy whine

I’ve been careful to try to focus on the positives in my life during this illness. Mostly because I don’t want it to define me, but also because I believe that thinking positively can affect things. I also want to be the kind of person who can accept trials humbly and gracefully.


When I had my first baby (colicky), I got hit with major post-partum depression, though at the time I didn’t know that’s what it was. I thought was that I was a horrible, ungrateful mother who sometimes, late at night in a crazy fog, didn’t like her child (her red-faced, screaming child), and I carried around a lot of guilt about these feelings—which guilt, of course, made things worse. But if I had known how normal those feelings were, I could have eliminated the guilt and recovered sooner.

So later, when it was all behind me, I felt a sense of mission about telling people how hard things had been for me, so that they could at least know they weren’t alone if they ever felt that way, too. I came to bemoan the cultural norm in the church of hiding difficulties and presenting a positive front. I really believe that more openness about struggles would be only good in our society.

So, out of respect for that belief, I’m going to gripe here. Once. And then (hopefully) be done.

I HATE HATE HATE this illness. Hate it. Hate it.

Hate what it does to my relationships. There are times (many) when I don’t want to be touched. When I don’t have the energy to be positive, make small talk, forgive immediately, control my emotions when I feel utterly spent, put up with pettiness or phoniness or argumentativeness. I hate having to go to bed early AGAIN and miss out on precious time with my family. I hate that my children and husband and friends have so much to forgive me for when I let them down because I don’t feel well.

I hate how it impairs my ability to serve. I feel muddled, and don’t recognize when others need me or how to help. I feel selfish about my energy and want to conserve it. I let sign-up sheets go by without signing them.

Which leads me to another thing I hate: this illness has changed my definition of myself. I used to be “a person who always signs on the sign-up sheets.” I am no longer. What else has changed? Who am I, really, if I am sometimes grumpy, often tired, often self-centered?

I hate how this illness has taken away the extra-curricular activities that used to help me define myself. This year, I am not a writer, or a teacher, or a thinker, or a critic, or a fosterer of connections in Mormon letters, or even much of a friend.

I hate the time this illness has taken from me. Not even counting the time I have spent in bed, I can’t imagine what I would have accomplished this year if I had not gone to a single doctor’s office, waited on hold for a single nurse.

And the money! With the money we’ve spent on medical testing for me this year, I could afford to reapply to the MFA program I dream about.

I hate how this illness has pitted me against my own body. I don't like or trust it anymore. I hate how my body’s faulty adrenalin system makes it impossible for me to feel peaceful for good chunks of most days. I’ve always felt that I can cope with anything as long as I can feel peace about it. Cancer? Death? Whatever. Bring it on. As long as I can feel peaceful, feel the Lord with me through the process, telling me that all is well. But that’s the one thing I can’t have, often.

And most of all, my biggest loss: I hate how this illness has taken away my ability to recognize the promptings of the Spirit. Because I have always relied on my body as a means to recognize spiritual feelings. In the past, wrong answers have left me feeling befuddled and nauseous. Right answers brought clarity of thought and energy. But what if I always feel befuddled and nauseous? What if there is no energy to be had, except an abnormal adrenalin rush that leaves me shaky and red-faced? I feel so lost and alone when I can’t rely on spiritual guidance anymore. This has been the most painful of losses and I am still mourning it deeply. Will I ever, ever get it back?

OK. The rant is over.

And now that it’s over I remember one of the biggest reasons I don’t let myself rant. Because it looks so ungrateful. I truly recognize the ways that I have been blessed through all this. I complain about the money, and yet we have always had enough. How big a blessing is it that we have been able to PAY those medical bills? HUGE. And I have been blessed with many sweet moments with friends, children, spouse, through all this, and with an added ability to recognize their sweetness. I have been able to fulfill callings, keep up the house (mostly), do all that is necessary, and many things that are nice (vacations, etc.). I have had enough, so it’s absolutely childish of me to complain about what I haven’t been given. I am grateful, and recognize God’s hand in my life in many ways.

(Still, I’m going to post this anyway.)


Michelle said...

I like your rant. And don't feel guilty about it. I agree with your assessment that we hide our pain too often and I also feel a great need to 'speak the truth.'

I am so so very sorry for all that you've lost. So sorry.

Anonymous said...

I am SO SORRY for what you are going through. Thanks for sharing it. It sounds dreadful. I do so hope a diagnosis and treatment will be found. There must be SOME test that you haven't had yet that has the answer.

You articulated something I've experienced but haven't seen talked about elsewhere: When I've been physically impaired (which has been quite often over the past 10 years) it HAS often made me feel less righteous and spiritual, whether because I wasn't as able to keep up on actions like scripture reading or service, or because my messed-up hormones seemed to tamper with my ability to think clearly or feel the Spirit. I've sometimes looked back on those times and wondered if I could have done better, but I've decided that I was probably doing my best, and that even if I could have done better, I can start with a fresh slate any time that I'm repentant and doing my best now. (And by "repentant" I mean "turning my heart toward the Savior and being willing to change and thy again," not "wallowing in discouragement, guilt, and shame.")

I definitely wouldn't say that illness can keep anyone from living the Gospel because that wouldn't be fair. (Well, actually there probably are cases where extreme mental illness might keep someone from living the Gospel (with God being the only One able to judge that's the case) and those individuals wouldn't be accountable so the Atonement would apply.) But I do think (for less extreme cases) it can make us feel like we're limping along compared to when we're healthful. But I guess even when we're healthy we're all quite lame. And none of our offerings are worth a whit without the Atonement.

Anyway, thanks for the whine, because I do like knowing what you're experiencing, even while I hate that you're experiencing it.

Anonymous said...

"Change and thy again" is a typo; I meant "change and try again."

Also, Milton's "On his blindness" is my favorite poem about serving the Lord though impaired--but I can't lie, I HATE the stages of my life where I have to "stand and wait."

I have a Twitter friend (one who I've met in real life but see MUCH more there) who's struggling with an extremely debilitating and so-far undiagnosed illness, and the other day she said that her sister-in-law had mopped her floor and that, crazy as it sounded, she was jealous of being able to mop. I told her I completely related. And I hope I'll remember to never again take for granted the ability to mop.

Darlene Young said...

I totally understand what she said, Zina. I remember when I was sicker and lying in bed and longing to SCRUB THE BATHTUB, for crying out loud. It wasn't that the bathtub was so dirty that it bugged me--I didn't want my husband or sons or friends to do it. I wanted to DO it, to feel the satisfaction of work and seeing something improve under my own hands.

These days I am well enough to do the work that I want to do (well, at least that which seems necessary) and I rejoice in it.

I agree with you about the importance of recognizing the atonement when a person is living with chronic illness. I especially depend on it to make up the difference in my parenting.

Edie Mindell said...

I'm sorry for what you've been going through. Hiding the pain is not good for us. We need to vent it out to be able to heal from it.

jenlinmin said...

I was just remembering how you "saved me" so to speak when I had my own colicky baby and was going through the anger/guilt cycle. You helped me see I wasn't alone and I was okay, even with the feeling of not liking this baby I had waited for with so much excitement, only to be disappointed in her and myself (still sounds so terrible). I've taken on your mission as my own, to let first-time moms know they can call me if they don't like their baby and I will understand and probably come take their baby off their hands if I can. I get so many weird looks when I say this, but hey, I did have one mom call me in tears and take me up on it and the world felt right again. Thank you for your example of honesty. It has saved at least two of us :)