Dear Dr. Gottlieb,
I am writing to you because I am in so much pain. I was a student in Philadelphia in 1998, and now I am living back in my native Egypt with my wife and two wonderful boys, Sileem and Mostafa. Sileem is 14 and Mostafa is 9.
Five months ago, Mostafa became very ill. He had many tests, but none of the doctors we saw could diagnose it; the only thing they agreed on was that he had an obstruction in his bile duct and needed a stent.
It felt like my precious son was dying.
Finally another surgeon said his gallbladder and bile duct had to be removed. Despite all these problems, we had hope for his improved health. But then an ultrasound showed that his liver and spleen were enlarged.
It looks like our son has to live his life with a most horrible disease. We are not mentally ready for this and we do not know how to deal with him or what to say. I cannot work, sleep or eat. Our lives have totally changed. The boy was always healthy and active. He loved school and was an excellent student. He loved life. Now, all of this is gone.
Throughout this nightmare, he has been most cooperative. He never resented anything about his illness. I am very angry at what is happening and sad for my son. How can I give him the power and patience to face his illness? How can my wife and I face what seems to be a lifelong crisis? How do we live?
Your story is heartbreaking. What to do? Whenever we are traumatized or terrified or face unfathomable loss, first you cry. So my first advice is to allow yourselves to cry. Cry as long and as deeply as you need to.
In a trauma like yours, emotions that feel contradictory live right next to one another – emotions like outrage and helplessness, great strength and weakness, deep love and great loneliness. Ideally one should just take time and let the emotions diminish in their intensity so you can see the path you must take. But in crisis, it feels as though time is racing and we must keep moving.
Amr, you suffer because you love your precious son. And of course you are angry; anyone who has experienced a theft would be angry. And you had your vision of your son’s life stolen. Your anger and fear can drive you to find better doctors, research his illness, and move mountains if you have to. But your anger can also keep you disconnected from the great gentle love you feel for Mostafa.
I wouldn’t worry too much about giving your son patience and power to face his illness. I would imagine everyone in your family feels pretty alone right now. So your son probably needs the same thing you do; understanding, love and companionship.
Hold his hand, look into his beautiful face, and ask him what it’s like to be going through this. Then listen. Listen with sadness and helplessness, listen with grief and listen with great love.
I wish you and your family peace.
A week later, I received the following e-mail from Amr:
In contradiction to the report of the ultrasound, the blood test he did last Thursday came out OK. This came as great news for all of us. We were supposed to repeat the ultrasound yesterday, but my wife and I decided to wait. We wanted to enjoy the good news.
The illness of my son has taught me that adversity can bring out the best in us. We live in a world of mass distraction that deprives us from inner peace and sometimes our humanity. This horror has helped me reclaim those things.