The hardest part about coming out has got to be coming up with a good opening line. I haven’t got one though. So I’ll give it to you straight.
I’m not gay, but I could be dying.
As fas I know, not imminently though. I’ve known for years now that certain things in my body aren’t working properly – like my heart and a part of my brain called the autonomic nervous system, and because we all need our hearts and autonomic nervous systems to keep things running smoothly, I do have a potentially life-threatening condition. Well, technically, I have two – Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome.
You look unsettled. Don’t worry, a lot of people have that reaction. You should see them when they try to shake my hand and find that it’s already shaking. They search my face for nervousness, fear, or an explanation of why meeting them would horrify me so badly. I tell them I have some medical conditions that can make my hands tremble. They look blank. Then I tell them how awesome it is – all my drinks are shakes and all of my toothbrushes are extra sonic. They laugh uncertainly.
Laughter is important
When my son was six or seven months old we were in an accident that totalled the car and damaged my right knee. My husband called me in the ER and when I picked up the phone he said, “Look, if you want me to spend more time with you, there are better ways of letting me know.” We laughed. Then he came and pushed my wheelchair around the ER in laps until the baby fell asleep and we went home and lived happily ever after.
Somewhere in the fairy tale our baby prince was diagnosed with autism, but that’s another story. While I would be hanging out the baby prince’s baby laundry, my arms would get very tired. Then we had a baby princess and if I stood up too quickly I would pass out. A second princess was born and by then my muscles cramped and twitched and hurt for days at a time. At present, I own the world’s heaviest smart phone, use both arms to carry a two-ton, 13-inch laptop, and have noted that carpenters don’t make sofas like they used to. They’re hard to get out of, and on top of that – they make this huge WHOOSH and creak when I fall – errr – daintily settle into them.
But we’ve settled. I have a full-time housekeeper and the driver takes the kids to and from school. Not because I’m the Queen, but because the last time I mopped the kitchen my legs hurt for three days. Chronic illness does have its perks – I can’t remember the last time I cleaned a bathroom. Oh, and I have country-wide parking privileges. Technically it’s called disabled parking, but I prefer to call it VIP.
I get special treatment
When I walk – because I can – slowly out of my car, people specially glare at me, wondering why I’m parking in a disabled spot when I’m so obviously not in a wheelchair. My husband says they’re just jealous, but once upon a time I too glared at people who parked in disabled spots and then skipped out of their luxury sports cars to the mall. If you gave me a little red convertible, I’d probably skip too, but just once, and then I would limp for a few days before sulkily admitting that I probably shouldn’t skip anymore.
I don’t skip.
Also I don’t do stairs.
The muscles of my mouth won’t. It’s a nerve thing, I think. I would never have known, since I’m not the whistling type, but I felt oddly insulted when my neurologist asked me if I could whistle. “Of course I can!” I huffed, and pursed my lips together to produce an indignant ffffffffffft.
He waited. I tried again. Then he made some notes and left me to mourn.
For a while I really did mourn. And by a while, I mean a good year or so. But the Kübler-Ross stages of grief: denial, anger, bargaining, depression and acceptance, are overrated, so I made up my own. Instead of denial, I started with terror for my children’s future, followed by appreciating every minute details of their hands, faces, fingers, and words. Then, I remembered what an idiot I’ve been for an overwhelming majority of my sentient life, and I began to beg for forgiveness before Allah called me for account.
There was never room for denial, as my creeping disability was constantly present, and finally getting a diagnosis was reassurance that I was not, indeed, crazy. Because weakness, fatigue, and pain are invisible, and POTS is hard to diagnose, I was told many times that my symptoms were in my head. Not that I was making them up – but that not being able to manage my stress was taking a toll on my body. When my eye twitched for a week, I was told to relax and consider yoga.
It finally took a biopsy to confirm that my muscles were indeed atrophying. Before that, it took X-rays, CT scans, lab tests, MRIs, and genetic testing to rule out nearly every other option before finally coming to POTS and Ehlers-Danlos. It also took several modern forms of torture – clinically known as EMGs and EEGs. In an EMG, they stab a needle an inch or two into your muscle and ask you to flex while they actually listen for muscle recruitment and response. I would like you to consider how big a needle feels to have a microphone in it.
In an EEG they jab the prongs of a vicious, hospital-grade taser into your face, arms, and legs and then shock you with it. There is also a good ole fashioned tape measure involved. The goal is to measure the speed at which your nerves conduct the shock along major pathways, and the tape measure is used to count how many inches you jump off the chair while they are doing so.
They measure the length of your limbs in order to calculate the speed at which the shock traversed said distance. So not only is it torture, it’s also math.
(If an electrical signal leaves the shoulder station at 4:15 pm travelling 30 mph, and the distance to the wrist is 60 centimeters, how hard will you punch the neurologist when it gets there?)
Are you laughing yet? Good, keep laughing. Because now I’m going to be serious. I have a seven-year old son with autism, a five-year old with exciting dreams, and a two-year old whose entire world revolves around me. And they’re all really cute, MashaAllah. In fact, they’re gorgeous, insane, challenging, and sweet. My five year old said to me the other day, “Momma, your hand is shaking!”
“Yes dear,” I said quietly, “It does sometimes.”
“I’ll stop if for you!” she said.
And then she held my hand.
My heart hurts. Emotionally, I mean. Physically, too, sometimes, because I have tachycardia and chest pain, but being forced to withdraw from more and more of my children’s lives is a bigger pain that I had not anticipated. I can’t climb. I can’t slide. I can’t carry beach toys through the sand. I will never again take them to a water park, or have a picnic on top of a hill. I may not live to see my youngest get to first grade.
For an entire year or more my prayers were fueled with the urgency of my possible impending death, but eventually, the terror subsided. The shock value of OMG I COULD BE DYING?! got replaced with OMG I’M STILL HERE!? and I started to accept my health problems as being Allah’s decision. I changed my focus from dying with dignity to living with disability , but then I had a new and really serious problem: my duas weren’t good anymore. I wasn’t afraid anymore, and that made me… afraid.
So then I had some more learning to do. I met with one Shaykh. He told me that fear was only one door to Jannah. Gratitude, contentment, and trust in Allah’s decisions were three more. I may no longer be crying in fear, but I if I can call on Allah with contentment, gratitude, and trust, then new doors will open to me, InshaAllah.
Then another Shaykh – he asked me to focus on my family and my legacy. So if you benefit from this article in some way, make dua for him too, because he asked me to write it. This article is part of my legacy project to create things that will earn blessings even after my death. So please make dua for me, regardless of whether I’m not dead yet when you read this. JazakAllahuKhayran.
And then the third Shaykh – he talked about trusting Allah to look after my children after I died, since He was their Rabb after all. I’m only a temporary caretaker. Allah’s the one who’s been really looking out for them this whole time.
I know I haven’t been a good person, but I know that Allah is Most Merciful, Most Forgiving, and has promised forgiveness for those who sincerely seek it. If I’m going to meet Allah soon, and I am a believer, and I have accepted His plans for my self, my children, and my family – I have nothing left but excitement. Fear, yes – that I still have things to answer for, but definitely excitement.
Now, when I pray my heart is fluttery and nervous with excitement and my vision blurred with tears. I raise my hands and I whisper, “Oh Allah, please let me be among those who get to see your Blessed Face.”
There’s a naked greediness for khayr that you can only savor when you’re really, desperately, in need. Also, there’s an exhilaration when you realize that when you pray, one of only three things will happen:
- Allah gives you what you ask for.
- Allah diverts or reduces a calamity that would otherwise have befallen you.
- Allah keeps your duas and gives them back to you on the Day of Judgment as blessings in your scale of deeds, when you need them most. This, as the hadith says, will be so utterly awesome and amazing that it will make you wish that none of your duas had ever been granted in this life.
I tell you, if I hadn’t been sick I would never have fallen so head over heels in love with dua. It amazes me every time I think about it – when I make mention of Allah’s name, He makes mention of mine.
No matter how many times I remember that, it still humbles and awes me to think of the Lord who created the universes (plural) with nothing more than a word (Be) saying my name. Were He to grant all of mankind everything they wished, their demands would not diminish His bounty any more than a needle dipped diminishes the sea – and He said my name? Me? A tiny, insignificant assortment of blood, bones, and ingratitude meandering through life and remembering Him only when I need Him, but the voice that created the cosmos spoke my name???
I’m not afraid anymore. I’m excited. That doesn’t mean I’m not still asking Allah to forgive my past sins, or heal me, or protect and guide my children, or help me settle my debts before I die, it just means that making dua is a whole lot more fun than it ever used to be. Some people are high on life. Pfft. I’m high on death, it’s awesome!
Unfortunately though, like every other non-chronically ill person whose body may or may not currently be dying, my faith ebbs and flows like tides on a beach. When the tide is high, I swim out to the sweet water beyond the edge of the world like Reepicheep. But when the tides are low, I struggle with my ankles in the sand and operational sea-foam up to my knees.
On a side note, there is a major difference between chronic illness on tv and chronic illness in real life. If this were TV, I’d get a Hallmark made-for-TV special: the tragedy of the brave special needs mother fighting to convert her Christian mother and leave a legacy for her children before she bravely and stoically dies – but not before an instrumental montage of her fight for acceptance, happiness, and eventually peace, before bravely and stoically passing away.
Also, if I were sick on TV I’d probably be losing weight in the crescendo towards my glamorous, waif-like death; pale but strangely beautiful in a victorian-style dressing gown of some sort. In real life, I don’t own any dressing gowns, and I might not even die early. I could just live a long, disabled life. In the TV version, I’m supposed to be dying as an inspiration to those who live. In real life I might be around for a while. And I might need you to brush my teeth for me. Thanks.
In any case, if I’m going to be sick (and die maybe) and I’m going to learn a lesson from it, then you should probably learn it, too, because guess what?
We’re both dying
You and me buddy, both of our bodies are deteriorating, but the difference is that I can feel mine giving in. And you might feel sorry for me, but consciousness of my own mortality is a gift. Even though I didn’t ask to be sick, I cannot ignore how priceless a reminder it is.
Once upon a time, I mourned the deterioration of my body, but within this failing shell of flesh, my heart has been given new life. My mental faculties have been honed to razor-sharpness against the whetstone of urgency. My fears in this dunya – of rejection, of pity, of uselessness – have no place in serving my aakhirah. I don’t know how much longer I have to live, or how functional I will be for the remainder of my life, but my sole mission it to make it to Jannah and try my best to help my mother and my children make it there as well.
My lessons are your lessons
My life is your life, the only difference being I know I’m constantly reminded of death but you’re probably still thinking you’re immortal. Just because you aren’t old or sick doesn’t mean you won’t die tomorrow; alone, unprepared, and entirely ambushed by a spiritual audit that you’ve done nothing to prepare for. So try this – set yourself a death date.
Six months from now, assume you’re going to die. Feel it, believe it, and imagine the circumstances that you’re going to die in. Think about the shock and pain on the faces of your parents, your spouse, and your children. Imagine them crying over your body. Think of the sins you never repented for, the people you never apologized to, and the regrets you’ll have then about the choices you’re making now. Circle the date in your calendar, post it on your wall and work towards it every day. Your life will change when you remember death daily, just like mine has.
And you don’t even have to be sick.
For me, I’m grateful for my illness because apparently I needed my body to start dying in order for my heart to start coming alive. There’s an appreciable irony here – now that my hands are weak and shaking, I want most desperately to raise them in prayer. Now that I can no longer kneel in sajda or even stand in prayer, my entire soul wants to swim in the depths of khushu and not worry about coming up for air.
Sometimes I extend my sujud and hope, just hope, that the angel of death will meet me in prostration. Other times, I touch my children’s faces and wonder how they’ll look all grown up and whether I’ll be with them. Allah promises us in the Qur’an that after hardship will always come ease. Sometimes though – both come at the same time. I’ve never been more tired, more weak, or less able to tie my own shoes, but I’ve never felt stronger, calmer, or happier to be Muslim.