What I learned from my son’s illness

Akmal, my son – 12 at that time (It was August a few years back) came down with a mysterious illness. He had trouble walking and moving. And his joints were in pain. While we persevered with his diagnosis as he racked time in the hospital, we learned a few things about him and ourselves:

  1. He’s tough – my son was in a lot of pain, but he kept himself distracted, and it worked to a point. He had never cried : just quiet. A dose of humour helped. But there were days when the pain was unbearable that he had to give in.
  2. It’s good to have your own wheelchair – there was and is a shortage of wheelchairs in the hospital, so we bought him one — albeit a small portable one that gave him and us the freedom to move around the ward and hospital easily. Akmal made a promise to donate wheelchairs to the hospital as well in the future.
  3. Time passes slowly : it passed slowly at times and quickly most of the time. Mona (Monarita) – my wife took care of him during the day, while I had the night shift, existing on/in a sleeping bag.
  4. Doctors’ sessions can be quite trying. We’re always asking questions and explaining his condition. Doctors were divided on his diagnosis. We were just trying to find out what was wrong with him. Saying that it was difficult is probably an understatement.
  5. Families and friends mattered : You knew which family and friends were close to you. Some were our lifeline – Mona’s siblings – Monalisa, Hartini and Kamal bolstered morale when things were down. I had whatsapp conferences with my siblings as well. When we could not fetch the other children from school, my sisters Tini and Suzana, and our neighbour Allie chipped in .
  6. Our moms were worried but they were steadfast in their support: Our moms were there braving the situation as it developed, resolving and comforting.
  7. We made friends : we made friends with other patients who came and went. Their fears became ours, and we share our concerns. We kept our spirits up. We saw great examples of families pulling together in trying conditions. We made friends with medical staff, guards, cleaners, caterers and baristas at the hospital’s Coffee Bean.
  8. Parking was expensive. And so was the food that we had to buy …. from everywhere and anywhere. But it was all part of an efficient time and resource management regime that we had to exercise. Think of it as a necessary part of being at the hospital.
  9. The school and our offices were mostly understanding. Thank God. But there was a lot of work to be managed, regardless. And I found myself firing off e-mails at 2–3 a.m every night.
  10. Everything went to a stand-still. Everything was focused on our son. We thought of the future ….his future, of the options and possibilities. We hoped and prayed. Then we moved on. We had always moved on.
  11. Arguments were necessary – I remember one specialist had wanted to destroy Akmal’s nerves to stop the pain. I argued for us to diagnose him properly first before committing to such drastic measures.

    The doctor’s question to me had been “What’s the use of identifying his condition if you can’t address his pain?”

    My response : “I can’t believe you are suggesting that, Doctor! If we are able to know the name of his condition, then we can follow the treatment protocol that is designed for the condition instead of creating solutions from thin air”

    We argued back and forth, before the doctor asked me an ultimatum :

    “Do you trust me? He had asked “Because if you don’t – whatever I’m recommending to you will just be pointless”.

    I looked at him incredulously, aware as well of the charged atmosphere in the consulting room.

    “Doctor” I had replied “You ask me whether I trust you? Well, let’s put it this way….I don’t trust you… but I am tolerating you!”.

    I looked at the doctor seated in front of me. He had probably spent years in his specialisation and was probably a brilliant doctor in whatever field he had been set in. But in the realm of doctor-patient interaction- his bedside manner was really deficient. I looked at Akmal seated next to me. My just turned 12 year old seemed to already make up his mind.

    “Dad, let’s just go home!”.

    That ended our consultation session. The nurse was apologetic. I told her that she was not at fault, and I thanked her for being patient. I could see how the doctor was deficient even in his interaction with her. Little did we know he had something else in mind for us days later.
  12. Tolerate within limits — within days, we were told to bring my son for a psychological assessment. Apparently The Doctor had signed off on my son and according to the established protocol, my son was required to be assessed by a psychologist on the possibility that he made the entire thing up, and the possibility that he was faking his pain.

    It felt like a punch in the stomach, but I had not been done in. The keyword back then and which is still a valid principle to this day for our family is “tolerate”.

    So I tolerated it. We went to a nondescript building that looked more like a school than a psychologist office and began the process of assessment. Akmal spent time alone with the psychologist while we waited outside. Through it all, the psychologist was respectful of us. Perhaps he had been briefed on my penchant for arguing my son’s case?

    And as expected, the assessment had been inconclusive.
  13. We took matters into our own hands – by that October, I had another meeting with the medical department and then expressed my wish to have my son diagnosed elsewhere under my own care.

    “Sir, please be aware that if you decide to do this, it will be at your own expense” — came the notification during the meeting.

    “Oh, yes please. I would do that. Definitely.” Had been my answer.

    With my sister Alif — we got hold of a paediatrician geneticist in London and made arrangements to get Akmal diagnosed. To help fund the travel and consultation, I sold my Prius. I also negotiated for some time off work.
  14. Tired but satisfied : by the time we were on the plane to the UK, I was tired and worn out. But I also felt energised as I knew Akmal’s diagnosis was on the way. I was also satisfied that I had taken hold of the situation and by some sheer determination — had insisted on being stubborn to get things done my way. I also felt safe in the presence of family in London. We stayed with Alif at her apartment in Portobello where it became our base in exploring London and also as our base for getting Akmal to his consultations.
  15. Nothing beats a good diagnosis : Days later at St. George University, hearing the paediatrician geneticist utter the words “Your son has Ehlers Danlos Syndrome Type 3” had been bittersweet. We were sad to know that he had that rare genetic condition but was also glad at the same time that we now knew the name of the beast. The condition affected his joints making them prone to dislocation and subluxation. My son would need care but at least we now know how to do it.
  16. Commitment : So yes, it was worth it. My take on our experience with our son was that we needed to understand the situation, and to understand the pros and cons of any solution. But at the end of the day, it is ultimately our choice and decision on how to proceed that is important. Yet equally as important are the actions that we are willing to take and commit in order to make the choice a reality.
Fist Bumps with Dad are always good…

It has been a few years. My son is a teenager now. Akmal knows his limits. But he is also equally quick to leverage on his strengths. He asked for a dog tag earlier on after his diagnosis. Together, we decided what to engrave on it — “Patience and Strength”. These are values that he lives by and gets him to focus on what is important, what can be done and how to achieve them.

It’s a study as well in planning and approach. He’s had to miss regular school as his back and ribs could not tolerate too much sitting or walking. So he is homeschooled, and we focused for him to take up a professional ICT certification.

There are good days, and there are bad days. Mostly it’s been good for him lately. He’s progressed from being mostly on his wheelchair to actually gaining back some of his mobility. Watching him deal with his limitation has been a learning experience for all of us. and has required us to take a different view and approach on life.

It has not been an easy road. The world of people that we meet has not always been understanding. We’ve been given The Look at some places we had been to. The insensitive and ignorant few that we’ve met would even question him being in the wheelchair for instance. One unforgettable character even questioned his validity for being in a wheelchair just because he is young. I’m still trying to get myself around that, honestly.

But really, I’ve seen these interactions as a great way to understand the human psyche — theirs and ours. And true to form, it required both Akmal and myself to return back to the wisdom of the dog tag — “Patience and Strength”. If people are not patient with us, then we’re the ones who have to exercise it more adequately. We’ve noticed too that people’s reactions and the questions they ask us or the way they interact with my son were also indicative of where they came from : their background, assumptions, biases, prejudices, and predispositions. For me, it has been a continuous lesson of being diplomatic when it comes time to dispense replies and providing explanations.

These situations also bring out the best in us. Akmal is a master in understatements. He is quick witted but very reserved, analytical even of those he encounters and how they interact with him. Unlike me, he would weigh in the efforts of explaining his condition. If he thinks that the effort is too much, or the person he is dealing with is not conducive to a healthy discussion, then he would rather keep quiet. The thing with Ehlers Danlos Syndrome type 3 is that it is quite a rare condition and not many doctors and medical personnel know much about it. Whenever he is in great pain or has dislocated a major joint, and we have to bring him in for an emergency procedure — most medical staff we meet would be oblivious to what the condition is. That required repetitive explanation on my part. It was so dire that I had even considered bringing in my Ipad during emergencies to give these medical staff a prerequisite lecture on Ehlers Danlos Syndrome … complete of course with PowerPoint slides!

I also keep a journal to track his progress. One particular entry epitomises what he goes through.

28 June 2018

Exhausted.

We’ve been to the doctors’ twice this week. The wheelchair is out into use again — he needs it more regularly now.

Watching him sit in his chair, telling his symptoms and discussing the dynamics of his condition with the doctors made me feel a bit inadequate. We’ve pushed on thus far to support him in whatever way we can — physically, medically, spiritually, mentally. No kid should be subjected to this harrowing experience…

His knee and hip bother him tremendously. Walking is a challenge, let alone negotiating the stairs on his own. He seeks relief from the continuous pain. The doctors try their best. They just could not fulfil it. We could not as well…

And yet here we are.

He is focused in his questions, his description of his problematic areas is engineer-accurate, changes measured in days, details down to the last bit. He tolerates his condition admirably, with a quiet resolve.

That resolve parted slightly when he broke down on the first day of the Eid festivities — about the only time I saw him give in to his pain — this time his back. While others were in my mum in law’s living room, Akmal rested in her bed giving the painkillers time to take effect. I kept him company and made sure that the jokes kept coming. Soon his cousins joined in and his grandmother’s room was filled with giggling and laughing kids.

His humour returned. It was never gone of course, just giving way sometimes to that unavoidable painful feature of Ehlers-Danlos. That humour is on display when coaxed out the right way.

At the hospital today, I drifted his wheelchair ala the Fast and Furious and told him that if he leaned to the left, the wheelchair would also turn to the left. So we did a few of these turns …. looking like a crazy father and son team, oblivious to those around us!

We laughed hard when I made the wheelchair go opposite the direction he was leaning into.

“Wrong way!” He laughed, as I very nearly scrape his chair against the wall, his mom looking at us quietly, and resigned to the ruckus we were making.

We didn’t care. The moment was ours….

Some entries however were painful to read. But these were part of the experience that signifies the need for more empathy in the world…

20 August 2019

So we went to get Akmal his new passport. Knowing that the queues could be quite long, I got the wheelchair out. Usually his back would hurt and the instability in his ankle would manifest themselves when he had to sit or stand for too long. So the wheelchair it was today.

When we got to our turn, I pushed him to the counter and for his photo to be taken. The lady took a look at us perhaps too closely. I could feel my protective instinct kicking in. After sorting out my son’s hair which was a tad too long — she asked him to move from the wheelchair to the chair in front of the camera for his photo to be taken.

As Akmal moved into the chair in front of her, her judgmental tone was unleashed,

“I see that he can walk and move on his own …. ” She said sarcastically. “Surely he doesn’t need the wheelchair.”

I remained calm. As I helped Akmal into place, I explained to her as best as I could,

“Oh yes he can move on his own” I said, “It’s just that sometimes his ankle and knee will pop out of place. They get dislocated easily making him prone to falling over. Also he gets it with his shoulder and elbow joints …. but other than that, nothing serious… really”

Her eyes grew wider.

But I wasn’t finished…

“…and oh …last time his rib bones were also out of place. He has trouble breathing as a result … but yes you’re right … he can walk on his own … ”

We had Akmal’s photo taken. As I was pushing him back to the waiting area, behind us a chatter was developing. The lady was explaining to her co-worker Akmal’s condition.

Having Ehlers Danlos Syndrome is not a walk in the park. Akmal is in pain on a daily basis. There are good days. And there are bad ones. As his parents, Mona and I will always get him to forgo his wheelchair just to exercise his joints and muscle. But he exists in a narrow parameter. If he strays from it a bit — strain his muscles slightly or stress out his joints — the system crashes and it takes him hours or days to recover.

I’ve learned not to be judgmental even if there are those around us who are. I suppose we’re used to the stares and assumptions. We roll with it. Akmal bears the brunt of these quite well actually. He’s mostly quiet. He’s had this condition since he was quite young. His diagnosis was only done recently.

He does not need pity though. He’s managing well. He can also do without the assumptions. I would like to tell that lady to be in his shoes for a day or so… that would be my advice.

The rest as they say …. is a piece of cake.

So eat it!

Hypermobile Ehlers-Danlos syndrome or Ehlers Danlos Syndrome type 3 is a group of rare inherited conditions that affect connective tissue. Connective tissues are tissues that provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. There can be significant complications and mostly musculoskeletal that can occur. The skin is often soft and may be mildly hyperextensible. Subluxations and dislocations are common — occurring spontaneously or with minimal trauma. These can be acutely painful.

You can find out more at Ehlers-Danlos syndromes — NHS (www.nhs.uk) and also at the following site : EDS Types — The Ehlers Danlos Society : The Ehlers Danlos Society (ehlers-danlos.com)

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Subandi Kamis

Subandi Kamis

Information is a collection of data. Knowledge provides insight. Wisdom navigates both. Writing dispenses everything.

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