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.

Someone who loves me sent a muscle biopsy to the Mayo Clinic and got me this myopathy shirt!
Well, I guess they do now.  Someone get this on Amazon, Momma needs a new mobility scooter! With racing stripes!

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. 




Abez is a 50% white, 50% Pakistani, and 100% Muslim. She is also chronically ill and terminally awesome. She is the ever-lovin Momma of: - Khalid, a special little boy with autism - Iman, a special little girl with especially big hair -Musfira, an especially devious baby Spoiler, Abez is also Zeba Khan on Muslimmatters.org.

  1. Naf

    As salama Aleykum Abez,

    I had to take a moment and pray and calm down a bit before writing this note to you. I’ve been reading your blog for years now, first time commenter! I’ve admired your humor, the way you write about your lovely family, and your faith. In a way you’ve become a part of my life! Your posts have made me smile, especially the ones about your children, your articles on muslim matters have made me pause and reflect. Overtime I have come to sincerely admire you and look forward to your writings. Many thanks for allowing us a glimpse into your life. I will continue to make the most sincerest duas for your continued strength, good health, iman and for Allah swt to make things easy for you. You have always wrote with such wisdom and grace, my admiration and respect for you only grows now.

  2. Sara

    My heart is full of love for you and I’ve been making duaa for you and your family all evening.
    Your words inspire me to turn to Allah and inshaAllah for that you will have ajr.

  3. Abez

    AssalamuAlaikum Naf-my apologies for disturbing you (see? this is why not dying can be really awkward!) but I am genuinely grateful for the duas. 🙂 InshaAllah, I hope Allah allows me to thank you personally for them in Jannah 🙂

    Sara: JazakAllahuKheiran 🙂 Same as above. Your pavilion in Paradise or mine?

    Baji: Score!

  4. HijabiMommy

    I don’t even know what to say :'(

    So I will just make hardcore dua’a for you.

    I don’t know you in real life but I do know this. You are a gem, Abez. I am always inspired by you whenever I read something you’ve written. May Allah make this easy for you and your family. May He ease your pain. May He answer your every prayer. Ameen.

  5. Bushra J

    This really touched me. I respect your attitude about, the attitude we should all have, as we are all indeed going to die. May Allah ease your suffering and grant you firdous. You inspire me.

  6. r

    Salam ‘alaikum…I had to google for myopathy. But alhamdulillah I am glad I did. You know, I have been feeling really awful this whole week due to work and certain people and the inability to cope with it and deal with it maturedly made me even more upset.Then I stumbled on your post. All I can say is, sister I love you for your courage and patience and insha ALLAH I will keep you in my prayers.We all are struggling with something and for some, somethings.But ALLAH ‘azza wa jall does not burden a soul more than it can bear.

  7. Abez

    AssalamuAlaikum Hijabi Mommy, Bushra, and R- the kind words and duas are much, much appreciated. I need all the prayers I can get, and if me sharing things makes you guys feels better about anything, Alhamdulillah. 🙂

    Sharing makes me feel better too, incidentally. 🙂

  8. Mona

    the catchy song made me laugh and laugh. i totally want to be around if you decide to try that on someone.
    big hug, you’re the best – may Allah SWT reward you. Aameen!

  9. Khadijah

    Assalamaulaikum wa Rahmatullahi wa Barakatahu Abez,
    May Allah SWT Make this part of your journey easy for you and for your family. Aameen! I’m so glad that in my own ‘not-dying- yet’ moment, I got to read this. And in this period of undying-ness, I wish we could spend some time together, people like you are so hard to come by, MashaAllah. May Allah SWT make you a living legacy for your family and the world. Aameen. Hugs and du’as. <3

  10. Sadiyya Nesar

    Asalamualaikum sister <3

    You are in my dua's. Keep strong. <3 I know the fear of your heart and lungs dying on at you but I have a feeling that we will be here for a while inshaAllah. Doctors thought I'd die when my mom was only one month pregnant old with me–they thought she miscarriaged. Then the doctors found out I had non specific myopathy when I was and thought I'd die then. Then they thought I'd die when 5, 7, 8, 9, 15 and are still wondering why I am alive. I think Allah has alhumdulilah chosen you toleave a legacy and mark on the ummah but with your health as a catalyst. I think we both have a duty to try to do so. I just finished my undergrad studies so I am only just starting my legacy but sister trust Allah in that He'd let you stay for your kids. He's most Merciful.

    I told my younger brothers that I have a feeling that I'd be the toughest granny haha because of how the others would either not be there or mope about being old and losing strength. :p We are the fortunate ones sis <3 Alhumdulilah. I wish I could just hug you but duas are better 🙂

    I rarely approach people but Ive been spamming you for the past day or two 😀 haha i feel stalkerish–this is something Ive never done. Youre exceptional. I feel so close to you because sometimes reading what you write seriously feels like you formulated the feelings and thoughts in my head due to my myopathy. Its seriously weird 😀 in a good way. I wonder what you'd feel when reading my stuff on my health. I have a lot of documents on my computer that I have been clinging to. I dont think its time yet but soon <3 inshaAllah. Love you for Allah's sake.

    Do you use the bipap at night? Random question. I do so I was just wondering. Random fact 😀

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