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‘I have been slain’…. My Scar, My Story

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Photo; Courtesy of Hussein Shaaban

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars” Khalil Gibran

They say a soul is nurtured with every wound. It is through pain that we learn and grow, our souls expand and our egos diminish. This, of course is true, only if we choose to grow whenever life serves us a wound.
In a world that strictly defines beauty, a physical scar can have a deep emotional impact- but it can equally tell a great story. I would love to share two true and inspiring ones here.

#1 Nadia: A scar that throbs with life

Young, attractive and carefree, Nadia had gone through life with little worries -until the summer of 1996 left its mark on her life. Nadia was travelling back home with friends after a weekend at the seaside when suddenly, a truck showed in front of their vehicle and flew them off the road. Nadia who was 17 then, suffered major blows. Glass shattered and cut vertically through her face and all the way down to her shoulder. Her right arm was paralyzed with pain. She was utterly dazed.

Hours of surgery left her with a heavily plastered right arm and a still very prominent vertical scar along her face. She was in agony and angry. Nevertheless, she went back to school and poured her energy into learning to manage with life and carry on her studies relying on her left hand. Deep inside she was aching and waiting for things to get better. Months passed. Her arm was healing while the scar on her face was not significantly improving. “It will get better but it will never completely fade” her doctor spurted out. At this point Nadia was fed up- fed up of the frustration, the waiting and the shaming. Her body has done its part in healing, now she needs to do hers. In a brave attempt to face reality, she tossed aside all hair and makeup tips to cover up her scar, and went for a bold a la garçon haircut that completely exposed her face. “It felt like I stripped down to my scar, that nothing else was more apparent. And it felt good!”

Today, almost 20 years later this scar marks my face as a reminder of the love I was showered with during one of the toughest times of my life, my mother’s bravery in supporting me and lifting my spirits while she was hurting badly on the inside, the strength I had to dig deep within to find and summon at the moment I realized that nothing on the outside will change; and most importantly a daily reminder of a renewed chance to live and make the most out of life.

Now when the gorgeous mother of two is given plastic surgery suggestions for her scar she responds with a cracking smile, “Well frankly, I’d rather get a nose job.”

#2 Habiba: I have been slain

No wait! This is no horror story, but it has got its share of pain and growth. Habiba (in the photo) 33 years old, has suffered from hyperthyroidism since 2007. In a relentless attempt to avoid surgery she tried different medication for years. Progress was minimal and a surgery became inevitable in 2014. At that point Habiba had to face her fears- of change to her body, of coping with new health issues, or simply of the unknown and what it may bring. The procedure was successful but it left Habiba with a deep scar along her neckline, and eventually a sense of self that is stronger than ever.

Initially she was uncomfortable and had to constantly explain her scar off as ‘temporary’. But it was not healing as it should. The weeks passed and it continued to glisten in the mirror, right back at her, day after day. “It was stubbornly unwilling to fade”. And to her surprise, the only thing that was really fading was her resentment for it.

Adorning my neckline like a priceless gem,persistently present and undeterred, it gradually grew on me. It reflected back my own stubbornness in a way and I decided to embrace it as it as part of who I am – a new part that I acquired by the simple process of living, and gaining and losing bits along the way.

Not only have I accepted it but I came to love it. That scar holds for me a moment in time- a moment when I had to face myself as I faced change, a moment when all my loved ones forgot their disputes (disputes that had marked most of my life up to this point) and simply united in love. The day I got my scar, my mother, father and sisters were finally in the same room, for the first time in years – and the last time forever. My father passed away suddenly four months later. Around the same time my sister had two consecutive miscarriages. It was a tough time. It passed! But it left a scar behind, the only visible part of an emotional journey. It remains to remind me of how I grew as a person and how we finally came together as a family to love one more time, hurt and heal, as one. Well, one minus a thyroid gland, two embryos and a father!

As the scar wove its threads into her very sense of being, it became much more difficult to explain it and unfair to be expected to. Tired of the frequent presumptions and the oblivious questioning, Habiba would cynically explain, “I have been slain but I am back to life, empowered as ever.”

The outer world sees only the ego in us and the ego exists in specific forms. These forms are easily labelled and judged- beautiful, ugly, bad etc. But the reality of who we are lies way beneath the forms we reflect to the world. We are the content of our stories, the product of our scars and the nourished souls beneath every healed wound.

My disabled Son…..Why is he here?

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It’s only today, 11 years into my journey as the mother of a disabled child, that I can sit down and write this.

Anger, devastation, and many tears preceded this reflective phase, no doubt. For years, I had simply stopped contemplating. I just accepted his existence as an unquestionable part of my life. Blind, immobile, and mute – that was my baby (Ozzy) and it was my mission to mother him.

But only when I thought I was the giver in this relationship, I realized that he has given me the most important lessons of my life:

I learned to appreciate everything. 

At 24, two years into my marriage, I gave birth to a beautiful baby boy — and lost him shortly thereafter to a list of congenital anomalies.

The turmoil began when Ozzy was about 14 weeks old. He couldn’t visually follow anything, and checkups revealed congenital cataracts. But after operating on his eyes, there was no progress with his vision. By the age of 6 months, it was obvious he wasn’t developing as he should. We started the medical search.

He had various scans, tests, and examinations. More anomalies started showing up, and our search turned into one for a diagnosis. Every doctor visit made me anxious and nauseous. Every potential prognosis hardened my insides and made me feel cold and lifeless.

By the time Ozzy turned 1, a genetic disorder was identified. Bottom line, my baby won’t be able to talk, walk, or even see. He will never see my face. And this pained me more than anything.

But amid all the pain, I found myself grateful for the good things that life threw my way. It’s like all my senses have been sharpened. I felt the love of family and friends, and I deeply appreciated the support.

Things such as being able to afford a doctor for my son, in a world where many sadly can’t, meant so much. Even the little gifts had a big effect. And I learned to really see them.

I embraced imperfection.

While most of us have big dreams for our children, I had to accept that my child will never be able to accomplish even the most basic tasks. Here was imperfection right in my face and I loved it. And would spend a big part of my life nurturing it.

As Ozzy grew, his condition became more complicated and his disabilities more debilitating, but he is an invaluable part of my existence.

I also had to accept my vulnerability. I discovered that pain connected me most to others and to myself. It shook the ego and touched the soul. Perfection required so much concealment and pretension. Embracing imperfection was real and soulful.

I learned the future means nothing. 

When you have a severely disabled child who is dependent on you for every need, all future scenarios are grim. The possibility of a long life is as daunting as the thought of a potentially short one. Hence you decide to leave the future there — and get on with life.

I refused to look into a prognosis or join groups where I would see how children with the same or similar syndromes have progressed. I take life one day at a time. The future will not have a grip on me — in any way. That was truly liberating.

I realized love can transcend all. 

Ozzy has never seen my face. And yet he is still able to recognize me and love me. All his physical disabilities have not stopped him from showing this love.

As early as 5 months old, he would only settle in my arms. Eventually, he smiled whenever he heard my voice or felt my touch. And when he started nursery, he would throw his hands up the minute I approached him at pick-up time, so I would lift him and cuddle.

Today, at 11 years old, he still loves to cuddle, but now he even wraps his arm around my neck, pulling me closer to his beautiful face. His smile lights up the world because it shines with love that’s beyond his physical form.

I learned to love unconditionally. 

Finally, there’s the answer to my big question: Why is he here? Obviously, I had to learn a few things. Most importantly, to be able to love unconditionally.

Think of the purest love in your life. It likely still contains some expectation on your part. But with a child like this, you just love — you cannot have any expectations from him.

In fact, my biggest relief came when I gave up hope that things will change. To be more blunt, that he would be fixed, even a little. He didn’t come to be fixed but to be loved.

As for him, when I wonder what he wants, I believe he is here to be alive and happy. Simple as that. And isn’t that why we’re all here, too?

Special children challenge our norms and social conditions, because they exist outside of them. We might think of them as rebellious souls, hoping to remind us that we exist in the first place simply to experience life and happiness.

Messages from the Heretic Pharaoh

 

I have always been infatuated with history thinking that its study adds nothing to our today. However, the more I observe human interaction, the more I realize it actually got countless lessons for us. History is not an abstract but it is the stories of people and their lives. And one enticing story for me is that of the reformist or heretic Pharaoh, Akhenaten. I don’t write this as a historian but as an individual inspired by the legacy of an ancient King and his lessons to the world.

Forgotten and overlooked for centuries, the story of Akhenaten was buried with his city Tel el Amarna until the 19th century. And still most of the attention that Akhenaten received came from his relation to the famous boy King, Tutankhamun, who was likely his son. But Akhenaten is way more than King Tut’s father, he is a mind of his own, a thinker to us, and a rebel to a deeply rooted and solid tradition. akhenaten

In the 5th year of his reign, Akhenaten- then Amenhotep IV- changed his name and moved his capital from Thebes, the imperial power center for centuries to Tel el Amarna, located on the east bank of the Nile River (312 km south of the Egyptian capital Cairo and 402 km north of Luxor).  He built his city Tel el Amarna in dedication to Aten, a sole god while abandoning long established deities and an entire tradition of worship. The reforms were not welcomed by all, especially the strongly rooted priesthood. Shortly after his death his cult and city were abandoned and older traditions quickly resumed. The excavations in the 19th century uncovered his mummy and the city of Aten along with his revolutionary, and perhaps even spiritual ideas.

Physical deformity can inspire the mind

For the previous 2000 years Pharaohs had to appear flawless in shape, vigorous and young. Many might be familiar with the peculiar representation of figures on the walls of ancient Egyptian temples. Kings particularly, are broad in shoulders, chest always front facing, while the face is usually in a profile view with a full eye. The Pharaoh, in particular was ageless and in perfect physical form.

Akhenaten was deformed: elongated skull, protruding belly, wide female hips and tapering fingers and toes.  Scientists now think he likely suffered from Marfan Syndrome, “a genetic disorder that affects connective tissues”, giving the person peculiar features.  Akhenaten embraced and depicted even in exaggeration, as some would argue, every aspect of his deformed figure.

Even his royal wife Nefertiti, a renowned world beauty, famous by her bust at the Berlin’s Neues Museum, was depicted later in life with the features of an aging body- wider hips, bigger belly and sagging breasts.  This was the first time in ancient Egyptian history that the royalty looked life-like in art.

Existing in a form far from perfect and quite removed from the perfectionist notions of art then, Akhenaten decided to find beauty in realism, celebrate it, even if it were grotesque; and by this he revolutionized ancient Egyptian art. As his depictions on the temples reflected him rather than ‘what he should have looked like’, Akhenaten must have journeyed into self-acceptance.

Akhenaten with wife and children

We are extensions of the divine   

As the hands of Aten reach down towards Akhenaten he articulates this extension of life from source in a most compelling way. A notion completely new to the world then. Akhenaten was the first to introduce this abstract of an absent god and harbor a faith in something intangible. He believes in the power of those rays and occasionally transforms under them, taking godly poses himself. While some historians would argue that his adoption of a monotheistic faith was to assume a role as a god himself, I believe that what he was showing is that faith aligns us to the divine within us.

Faith roots us stronger into ourselves, connects us to us and what is beyond us, from which we come and in which our true value lies.

We live in a world that lacks faith, despite a strong presence of religions. Monotheistic religions are an undeniable part of our lives today, and most of us are compelled to define ourselves against it. Some believe and follow ardently while others reject altogether.  Most believers are really following an institution of preconceived ideas and practices that they tag as ‘godly’, while atheists tend to rely heavily on the rational mind assuming full responsibility for their lives. In both cases, there is an inherent sense of control that disrupts faith in one’s self.

The belief in something beyond us- from which this life, that is us, extends- is really a belief in ourselves, in our own existence in all that it takes. Being an extension of the divine entails faith in our intellectual processes, emotional intelligence and abilities. Within us is the source of love, life and creation. Perhaps it took a deformed body and a heretical mind to be the first to discern this.

Tapping into inspiration….becoming a heretic

There is much speculation as to what incited Akhenaten to abandon the traditional gods and give in completely to the calling of Aten. His faith in Aten may have been a calling or an act of rebellion, but in all cases it allowed him an existence beyond the physical form. Whether he was deformed and accepted it or was physically normal (one theory) and opted for his physical misrepresentation, Akhenaten knew that there is another dimension to existence beyond what we call this time-space physical reality. And he attempted to commemorate that message for us on the walls of the temples of Aten.

But really, the biggest lesson from Akhenaten for us today, lies in the very value of his heresy. Etymologically, “heresy” comes from Greek, meaning “choice” or “thing chosen”; but in practice it is often a long intellectual and emotional process that leads to a full experience of awareness. I’m not saying that every heretic must be celebrated but the reality is that more often than not, it took heretics to inspire humanity, develop thought and make history worth its stories.