Hello my name is: Not Dying-Yet.
So the funny thing about having unspecified myopathy is that no one says I’m dying, but no one says I’m not either. Yes, the muscles in my body are atrophying, and yes you need muscles to do things like pump blood and breathe, but because I haven’t developed any serious heart or lung complications yet, we’ll stay on the safe side and just say I’m getting weak-er, but not necessarily dead-er. Let us call it: not-dying-yet
It can be awkward sometimes, this whole not-dying-yet thing, especially when meeting new people. I feel like I need to somehow warn them before they emotionally invest enough for this to sadden them. Otherwise this is what happens:
Me: Hello new friend, my name is Abez, and I love you!
New Friend: I love you too! Let’s hang out tomorrow, and next year too!
Me: Sorry, but I’m sort of dying but not really dying because my muscles are dying but my heart and my lungs aren’t yet dying but there’s no guarantee that they won’t at any time so I guess you could say that I’m not dying yet, though I could be but really aren’t we all?
(awkward silence) (pity) (shock)
Me: Hello new friend, my name is Abez and the muscles in my body are dying!
New Friend: Sorry to hear that but pleased to meet you, Abez!
*firm handshakes for all*
I have a good friend (I’m not sure if she has the time to read my blog anymore) who I’ve known for around six years now. When I casually told her I had been diagnosed with myopathy and that there wasn’t much that could be done, she was upset. And later she called me and apologized. I asked her what she was apologizing for. She said she felt stupid- I was the one who was sick, but she was the one needing to be reassured that everything was going to be ok.
I didn’t think that she needed to apologize at all, because I’ve known for over a year that I’ve had myopathy, and even longer that something wasn’t right with the way my body was working. I’ve had almost ten years to get my head around being sick, but she got ambushed with incurable, progressive, muscle atrophy one lazy afternoon after tea and cookies. I should have prepared her better, but I’m not sure how. A catchy song perhaps?
Hey, I just met you,
And this is crazy!
My arms are dying,
So hold my baby!
Sometimes I’m tempted to tell random strangers I have myopathy. When I use my disabled parking permit, sometimes people glare at me. I look fine- slow, but fine. One lady in the hospital parking lot tried to stare me down last week. I was in a hurry and didn’t want to confront her in front of Iman, so I avoided eye contact and just moved forward. But I really do want to tell people who stare that the reason my housekeeper is carrying my toddler is not because I don’t care or don’t love her, it’s because carrying her can make my arms hurt for hours, or I could lose my balance and fall, hurting us both.
The reason why I don’t pop up like a piece of socialite toast and help the hostess in the kitchen at dinners (like I conscientiously used to) is because my body hurts, my legs are weak, and all your guest-size platters of food are too heavy. The reason why my husband changes diapers and takes kids to the bathroom even at a guest’s house is not because he’s whipped, it’s because he’s an amazing, hands-on, loving father who’s doing his best to keep my pain level to a minimum.
And it is a pain. It’s a deep down ache, starting from your bones and spreading uniformly throughout your flabby, shaky muscle. It doesn’t come in waves, it floods and peaks and stagnates for hours, and sometimes all you can do is sleep it off or sit it out. It makes it hard to be patient, hard to speak gently, and hard to suffer the inconsiderate acts of very considerate people who don’t actually know how much you’re hurting because you haven’t told them your limbs are dying. Because how are you suppose do even do that when you’ve only just met them? It’s not like they make a t-shirt for that.
So yeah. It’s weird, dying. But not yet. Technically we’re all dying, the only difference is that some of us get pop-up reminders about our appointment with God. I kinda like this new system- my legs hurt, so I make dua. My arms hurt while making dua, and it makes me make more dua. I’m praying more, stressing less, budgeting my energy and prioritizing my life.
I once had too many things on my plate, but I’m passing some of those things off to other people and I hope, InshaAllah, that I can leave nothing on it but my family, my children, my faith, and my health. Also, my crazy attempts to cram as much legacy-building for the shameless pursuit of sadqa-jaariya before I meet Allah.
That’s another funny thing about having unspecified myopathy- I don’t know if I have the time to be subtle about what I’m looking for, so I will put it bluntly: Read this poem I wrote way back in 2004 after being told (mistakenly) that my pain was Trigeminal Neuralgia. If this blog or this poem makes you grateful to Allah, or strengthens your resolve in current difficulties, or even makes you say a single MashaAllah (for the sake of saying it) I’ve earned a few more blessings. And I need me some blessings. So start reading, cuz momma needs a new castle in Jannah.
With racing stripes.
By Abez, The End.
There is a nagging gnawing on the inside of my self
It’s the feeling of my body giving up before its time.
In the quiet twilight hours between one prayer and another
Once I prayed for health
Now I pray for peace.
There is a writhing moaning in the deepness of my heart
It’s the devil down within me that wants me to complain.
But I have built a fortress with the patience of my faith
And I will shelter there
However harsh the pain.
There is a desperate longing in the reach of my embrace
For life and love and happiness and gentle many years
But I shall fold my arms around the comfort of my prayer
And I may often cry
But never bitter tears.