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 am overweight and physically unable to exercsie, 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.
The Hyperactive And Inattentive Child | Dr. Hatem Al Haj
Some kids are fidgety and hyperactive, as if they are “driven by a motor,” constantly moving around, bouncing off the furniture, and unable to stay still and quiet. They may be also quite impulsive, so they can’t wait for their turn, blurt out answers before you finish your sentence, and intrude in on others. Others are inattentive and out of focus – almost always. They are disorganized and forgetful, and they lose their things regularly. These criteria could be bad enough to qualify for a diagnosis of ADHD, which is Attention Deficit And Hyperactivity Disorder. This disorder is characterized by inattention, hyperactivity, and impulsiveness. Some may have the inattention alone, others the hyperactivity alone, while a third group has both.
This spectrum of disorders may lead to poor performance in school, inconsistency in work, emotional immaturity, and social difficulties, but let us not forget that these kids may have some special strengths as well, such as their boundless energy, enthusiasm, humor, and creativity.
The diagnosis of ADHD will need a specialized health care provider to make, but the following tips will be helpful for kids who share some or all the aforementioned criteria, whether they have the disorder or not.
Since a big part of the problem that will lead to most of the difficulties in schooling is the disorganization and lack of focus, it is recommended that we help those kids stay organized and on task through the following measures:
o Consistent schedules and having daily routines even when it comes to the waking up rituals: going to the bathroom, brushing their teeth and putting on their clothes. (Older kids should have prayed fajr before sunrise.) Have the schedule on the refrigerator or bulletin board in their study or bedroom. (Don’t forget to schedule time for play and wholesome recreation.) Let the child be part of the planning and organizing process.
o Keep in the same place their clothes, backpacks, and school supplies. Use notebook organizers and color-coded folders. If you homeschool, make the day structured and buy them a desk where they can put their belongings, and if you send them to school, make sure they bring back written assignments.
o Decrease distractions as much as possible. If you home school, then I suggest for you to keep a quiet environment as much as possible and avoid excessiveness in decorating your house (particularly their study place) with knickknacks and pictures. Maybe this would provide us a reason to try (and hopefully appreciate) minimalism!
o TV and videogames are bad for all kids, and even worse for kids with ADHD, except when permissible programs are watched in moderation. See the AAP’s guidelines for “use in moderation.”
Some tips for parents and guardians
- Consistent rules must be in place. Rewards must be given to the children when they follow them, and punishment must be judiciously used when the rules are broken.
- Kids with this condition may have low self-esteem, and it is detrimental to their welfare to further lower it. Thus, praise good behaviors frequently even if they were little and expected, such as putting their shoes where they belong.
- Do not be frustrated with the inconstancy of the child’s performance. He may get a 100% on one test and then fail the next. Use the first to encourage them and prove to them that he can do better.
- One on one teaching/tutoring may be needed to enable the child to keep up with the schoolwork.
Should we use medication?
Medications are sometimes needed. You must consult your doctor regarding their use.
Here are my non-professional thoughts:
- Prescribing those medications should never be a kneejerk reaction. First, we must be confident of the diagnosis, then, try all other modalities of therapy, and finally, entertain the option of pharmacological intervention.
- Medicating the children should never be for the interest/comfort of the parents or teachers; it should be only for the interest of the child.
- Medications should be tried if the child is failing to keep up with learning knowledge and skills s/he will need in their future, and other therapies failed to help them
How Grandparents Can Be Of Invaluable Help In A Volatile ‘Me First’ Age
I grew up in a small rural village of a developing country during the 1950s and 1960s within a wider ‘extended’ family environment amidst many village aunties and uncles. I had a wonderfully happy childhood with enormous freedom but traditional boundaries. Fast forward 30 years, my wife and I raised our four children on our own in cosmopolitan London in the 1980s and 1990s. Although not always easy, we had a wonderful experience to see them grow as adults. Many years and life experiences later, as grandparents, we see how parenting has changed in the current age of confusion and technology domination.
While raising children is ever joyous for parents, external factors such as rapidly changing lifestyles, a breath-taking breakdown of values in modern life, decline of parental authority and the impacts of social media have huge impacts on modern parenting.
Recently, my wife and I decided to undertake the arduous task of looking after our three young grandchildren – a 5½-year old girl and her 2-year old sibling brother from our daughter, plus a 1½-year old girl from our eldest son – while their parents enjoyed a thoroughly deserved week-long holiday abroad. My wife, who works in a nursery, was expertly leading this trial. I made myself fully available to support her. Rather than going through our daily experiences with them for a week, I highlight here a few areas vis a vis raising children in this day and age and the role of grandparents. The weeklong experience of being full time carers brought home with new impetus some universal needs in parenting. I must mention that handling three young grandchildren for a week is not a big deal; it was indeed a sheer joy to be with these boisterous, occasionally mischievous, little kids so dear to us!
- Establish a daily routine and be consistent: Both parents are busy now-a-days earning a livelihood and maintaining their family life, especially in this time of austerity. As children grow, and they grow fast, they naturally get used to the daily parental routine, if it is consistent. This is vital for parents’ health as they need respite in their daily grind. For various practical reasons the routine may sometimes be broken, but this should be an exception rather than a norm. After a long working day parents both need their own time and rest before going to sleep. Post-natal depression amongst mums is very common in situations where there is no one to help them or if the relationship between the spouses is facing difficulty and family condition uninspiring.
In our trial case, we had some struggles in putting the kids to sleep in the first couple of nights. We also faced difficulties in the first few mornings when our grandson would wake up at 5.00am and would not go back to sleep, expecting one of us to play with him! His noise was waking up his younger cousin in another room. We divided our tasks and somehow managed this until we got used to a routine towards the end of the week.
- Keep children away from screens: Grandparents are generally known for their urge to spoil their grandchildren; they are more relaxed about discipline, preferring to leave that job to the parents. We tried to follow the parents’ existing rules and disciplinary measures as much as possible and build on them. Their parents only allow the children to use screens such as iPads or smartphones as and when deemed necessary. We decided not to allow the kids any exposure to these addictive gadgets at all in the whole week. So, it fell on us to find various ways to keep them busy and engaged – playing, reading, spending time in the garden, going to parks or playgrounds. The basic rule is if parents want their kids to keep away from certain habits they themselves should set an example by not doing them, especially in front of the kids.
- Building a loving and trusting relationship: From even before they are born, children need nurture, love, care and a safe environment for their survival and healthy growth. Parenting becomes enjoying and fulfilling when both parents are available and they complement each other’s duties in raising the kids. Mums’ relationship with their children during the traditional weaning period is vital, both for mums and babies. During our trial week we were keenly observing how each of the kids behaved with us. We also observed the evolution of interesting dynamics amongst the three; but that is a different matter. In spite of occasional hiccups with the kids, we felt our relationship was further blossoming with each of them. We made a habit of discussing and evaluating our whole day’s work at night, in order to learn things and plan for a better next day.
A grandparent, however experienced she or he may be, can be there only to lend an extra, and probably the best, pair of hands to the parents in raising good human beings and better citizens of a country. With proper understanding between parents and grandparents and their roles defined, the latter can be real assets in a family – whether they live under the same roof or nearby. Children need attention, appreciation and validation through engagement; grandparents need company and many do crave to be with their own grandchildren. Young grandchildren, with their innate innocence, do even spiritually uplift grandparents in their old age.
Through this mutual need grandparents can transfer life skills and human values by reading with them, or telling them stories or just spending time with the younger ones. On the other hand, in our age of real loneliness amidst illusory social media friends, they get love, respect and even tender support from their grandchildren. No wonder the attachment between grandparents and grandchildren is often so strong!
In modern society, swamped by individualism and other social ills, raising children in an urban setting is indeed overwhelming. We can no longer recreate ‘community parenting’ in the traditional village environment with the maxim “It needs a village to raise a child’, but we can easily create a productive and innovative role for grandparents to bring about similar benefits.
Raising a Child between Ages 7-12
From a cognitive-development standpoint, this is called a concrete operational period, according to Jean Piaget.
(N.B: Some adults never progress beyond this phase, while 15% of kids may reach the following formal-operational phase at age 9!)
The child now (7-12) may factor in two dimensions of an object simultaneously. So, the longer cup may have less water because it is thinner. However, this is still hard for him/her to perform in the abstract realm, so, they are still uni-dimensional in that respect. Concepts and behaviors are still black and white. It is also hard for the kids in this stage to imagine and solve the structure of a mathematical problem. They cannot think contrary to facts. In other words, you can’t get them to use as a basis for an argument a question like what if the sky rains sugar instead of water?
Socially, Erikson felt that in this period kids develop industry or inferiority. According to his theory, from age six to puberty, children begin to develop a sense of pride in their accomplishments. If encouraged, they feel industrious and confident in their ability to achieve goals.
Based on these observations, we may recommend:
1- Using a lot of hands-on teaching, since they still have limited ability with conceptualization and abstract reasoning.
2- Continue the focus on memorization. If you want them to finish the Quran in 1-2 years, 12 and/or 13 seem to be the prime years for that. This suits some children and some families, not all. If you like a more gradual approach, you should have them start serious memorization at 7, accelerate at 10, and finish by 15-17. Not all kids are meant to memorize the whole Quran though; they can still be educated and pious. Invest in their strengths, not your dreams.
3- Use concrete props and visual aids, especially when dealing with sophisticated material. Use story problems in mathematics.
4- Use open-ended questions that will stimulate thinking and help the child reach the following stage faster. Example: “What do you think about the relationship between the brain and the mind?”; “What do you think about the relationship between prayful-ness and piety?” Make sure you know the right answers!
5- More explanations will be needed, but keep them simple, and even though they should be more detailed than the last stage, they still need to be uni-dimensional. Examples: we obey God because he created us; if we disobey Him, we get punished, and if we obey Him, we get rewarded in this life and in the hereafter. Too early to teach him that “the brokenness of the disobedient is better than the haughtiness of the obedient.” Break it down. Humbleness and obedience are good, while haughtiness and disobedience are bad.
6- Encourage and praise their accomplishments, while making them aware that there is always room for improvement. Continue to encourage initiative-taking and leadership qualities, yet you may also set limits, and make them aware that they will have to always report to someone. Even if there are no people above them, Allah always is. They have to adapt to being leaders and followers at the same time, because that is the reality of all people.
7- This is still a stage of belonging and affiliation to the group, and the child will develop more or less attachment to Islam through his or her experience at the masjid and with the community.