segullah n me: the rest of the story

There is a blog called Segullah that I have read for years. I can't even remember how I first came upon it.  Their byline says, "Mormon women blogging about the peculiar and the treasured". They have a variety of regular posters and occasionally they have "guest" posters. About a month ago, they requested people to guest post on the topic of "Mormons and Disability".  "Hey," I thought to myself, "that's a topic I could write about."  So I did.

I wrote an essay about being diagnosed with MS all those months ago. They recommend that the word count is kept between 500-800 words.  I could have easily doubled or tripled that, but eventually edited it down to 828 words. I edited it over and over, cause (at least for me) when I write things, and go back and edit, my mind supplies things that aren't there or misses mistakes, 'cause I know what it's supposed to say.  Editing is hard.

I sent it in to their guest post editor and she replied back quickly saying they would like to publish it over the weekend.  She asked me to submit a picture and a 3-4 word biography on myself.

They put it online last Saturday.  Reading it again, I saw a mistake. A word that should have been left out of a sentence that I must have edited. And later I realized that in two places I reference my 7 kids and in one place I say 6.  DUR.

Which brings me to my next point, "Did the editor even READ it? Isn't her job to catch these things??????"  (In case you were wondering, yes it is.)

Those annoyances aside, it's been a fun experience. Although the essay was difficult to write and I cried multiple times while writing it and it still makes me cry when I read it (and not just because of the stupid mistakes). Still it was satisfying to write something for lots of people to read.  Eighteen people made comments, eight people clicked the "heart" thingy (I don't even know what this means), three people "tweeted" about it, and 104 people "liked" it on FaceBook.

So because this silly little blog is the record of my life, I am posting it below. Edited!  Those of you who have already read it, go eat a cookie.

Stephanie Farr is married to the world’s best handyman and is the mother of three daughters and four sons. She has a degree from Brigham Young University in Elementary Education, but never actually taught school, due to her (cough) honeymoon baby. She has an unhealthy obsession with pebble ice, Chapstick and clean sheet day. She dreams of being a writer when she grows up, and practices by blogging sporadically at mamamelee.blogspot.com and regularly at todosmishijos.blogspot.com.

Perfectly Imperfect

I used to always say that after the resurrection, I wanted a better chest and fewer moles. In The Book of Mormon, Alma teaches, “The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame.” Shouldn’t we be able to submit some kind of wish for a “proper and perfect frame”?  Maybe there should be a spot on the tithing slip for this.

Now however, my desires have changed. I can deal with being flat chested and spotty; my ultimate wish would be to get my hands back.

I lost my hands in October of 2011. I had been happily sleeping in on a Saturday morning. The sun was streaming in through my window, nudging me awake. I groggily stretched and noticed that my right hand was numb. Thinking I must have been sleeping on it, I fully expected the numbness to go away in a few minutes.

It didn’t.

Days went by and it was still oddly numb. One week later, I realized that not only was my hand numb, but my right foot and the whole right side of my body. I began feeling a strange sensation, like water trickling down my right side. I kept telling my husband, “I feel like I’m sweating profusely, but every time I check, there is nothing.”

The severity of the numbness in my hand progressed to pain. Within a few weeks both of my hands were in agony. My hands, which I had previously never given a second thought to, were useless because I could not stand to touch anything. My children and husband were doing the cooking, cleaning, and laundry. I sat at dinner one night, crying because I could not pick up the grilled cheese sandwich they had prepared. The texture of the grilled bread felt like stabbing fire.

It seemed like the ultimate cruel irony. I sew, I craft, I blog, I enjoy photography, I have seven kids and a husband. I am the Primary President in my ward. With useless hands, how could I do these things?

Several doctor visits and two MRI’s later, I received the diagnosis. Our phone rang, the caller ID indicating that it was my doctor. I sat down on the overstuffed chair in my bedroom, in the dim morning light of a grey day. My heart pumping madly with nervous energy, I answered the phone. “While there is not a definitive test for Multiple Sclerosis, all the signs show that you have it. There are lesions on your brain and on your spine. I can recommend a Neurologist who specializes in MS, if you would like. I’m really sorry.”

I’d like to be able to say I was up for this challenge from the start, but I wasn’t. The realization that life as I knew it was over, crippled me. Depression, something I had never before experienced, hit with a vengeance. With my husband at work and my children at school, I lay in bed for weeks, numb with grief and fear. My youngest daughter watched movies for hours on end while I barely functioned.

Thinking of my future was terrifying. How long before I would be in a wheelchair? When would I lose complete control of my bladder and other body functions? Would I lose the ability to speak? When would my mind lose the battle to the lesions dotting my brain?

I wallowed in depression and grief for most of two months. Then I decided that with the new year, I would start again.  I listened to President Uchtdorf’s talk, “Forget Me Not,” over and over and over. His words soothed my troubled soul. “Sisters, wherever you are, whatever your circumstances may be, you are not forgotten. No matter how dark your days may seem, no matter how insignificant you may feel, no matter how overshadowed you think you may be, your Heavenly Father has not forgotten you. In fact, he loves you with an infinite love.”

I began to feel hope. The way I had always envisioned my future had been changed, but I still had my life. I had a loving husband and wonderful children. I had friends and neighbors who had served our family in countless ways. I remembered what I had for a time forgotten, that Heavenly Father knows me, loves me and watches over me.

My hands will probably never return to normal and my body will continue to deteriorate. I know there are challenges ahead. My little cosmetic idiosyncrasies have become laughingly unimportant. I look forward to the time when, “all things shall be restored to their proper and perfect frame.” But until then, I will try to live daily with faith and trust in the Lord.

It can be found online here, along with all the comments.

2 Comments

undefined:

If it makes you feel any better, I don't think the editors there proof anything they post. I find mistakes in the essays there all the time and I have wondered just like you if no one reads these first to double-check for errors.

All that aside, I think your post was great. Yeah for you for putting yourself out there!

undefined:

Thank you for the blog invite. I can tell I'm going to like it here. You write from your heart.

I can imagine that you did cry while writing your post for Segullah. I teared up over and over again while I read it. You woke up one morning and your life changed just like that. Yet I can tell you are a very strong determined woman. I'm certain your children are growing up learning so much about the eternal perspective from you, and what really matters in this life.

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