Perspectives: The fast of a lifetime

Zane and his mother

Ramadan will be especially challenging this year. It falls during the summer so the days will be long and hot. Muslims will refrain from food, drinking, smoking or acknowledging sexual desires for about sixteen hours a day for a whole month. It is a true test of faith and human endurance. Every pang of hunger is meant to bring me closer to salvation. Every call of thirst is part of my shield. Fasting was always something I did out of obligation for my religion. However, fasting has taken on new significance for me since the birth of my son.

It has been nearly 116 weeks or 818 days or 19,632 hours since Zane’s diagnosis. He was only a year and a half old and had spent months vomiting, crouching over in pain and battling hunger because of his inability to keep food down. His growth was stunted. No one knew what was wrong. I can not recall the exact date he was diagnosed because it was all so traumatizing.

“Eosinophilic esophagitis,” the doctor said. I had no idea what that was but I wrote it down, attempted to commit it to memory and practiced its pronunciation. I looked it up. White blood cells called eosinophils fight off harmful foreign substances that invade our body. In my son’s case he was born with a rare genetic disorder causing eosinophils to believe food is a harmful foreign substance. They grow in his esophagus as a first line of defense against anything he eats or drinks causing inflammation. Food is poison for those suffering with the disease.

The doctor assured me that with a restricted diet he would be fine. We eliminated eight foods and then ten and then fifteen until finally doctors realized Zane could not eat anything at all. “He will need to drink an elemental formula indefinitely,” the doctor said. The foul tasting nutritionally complete liquid was his only life source. In the meantime, we did food trials every six to eight weeks followed by an endoscopy to see if Zane was really allergic. He was. We locked up the fridge, hid the food and stopped eating and drinking in front of him.

Anyone who has ever fasted knows the toll that it can take. We feel tired, some experience headaches, sometimes we can feel chills and can have difficulty concentrating. Right before iftar, the breaking of the fast, our senses are heightened. We can smell food and our hunger wakes up and calls out. That last hour or half hour can be the toughest because our bodies know that food is soon on the way. It is the ultimate test of faith to endure for an entire month. It is no easy feat but one that can be overcome. But, what if that fast lasted a lifetime? What if there was never an iftar? What if there was no treatment or cure except endurance?

After several failed food trials and many months, the nutritionist suggested that we try either turkey or pork next on Zane. Many kids who suffer from this new and emerging disorder can often tolerate one or both of those meats. Zane failed turkey. We struggled for months over whether or not to feed pork to him. I read the ayah over and over again, “He hath forbidden… the flesh of swine… But if one is forced by necessity, without willful disobedience, nor transgressing due limits – then he is guiltless, for Allah is oft forgiving and most merciful.” (2:173) We had tried many other types of meat, including duck and oddities like ostrich. They all made him sick.

Zane begged for food. He once asked me if I would allow him to just lick one slice of bread. When we went to the mall he would ask total strangers if he could have a bite of their cookies or sandwiches. As a mother, I was heartbroken to see my son struggle this way. Every once in a while Zane would eat something that would make him so sick he would have to be hospitalized from dehydration because he vomited so violently. He would vomit until he fell unconscious. Then Zane would give up on food for a few days or sometimes for a couple of weeks. It takes time for his body to forgive and forget. It takes time for him to forget enough of what it is like to be sick for his senses to begin to take over again. After one or two weeks without a single solitary bite of food, he begins to want what he smells and knows tastes so good that he’s willing to sacrifice getting sick just one more time – even if it means being hospitalized.

The Bush administration approved putting inmates at Guantanamo on liquid only diets for a reason: it is torture. Depriving a human being of one or all of their five senses when their five senses are functioning inflicts hardship and pain. Fasting a whole month is challenging but certainly not intended to be torture. That is why fasting is exempt for young children, or women that are nursing, pregnant, or menstruating or for those that are ill or are traveling. “Those who can fast, but with great difficulty, may substitute feeding one poor person for each day of breaking the fast. If one volunteers (more righteous works), it is better. But fasting is the best for you, if you only knew.” (2:184)

The main purposes of fasting are threefold: to learn self-restraint (taqwaa), to instill appreciation and gratefulness (shukra) and to glorify Allah or God (takbir). My family is fortunate to live most of the year in Dubai, where it is against the law to eat, drink or smoke in public during daylight hours in Ramadan. We look forward to this time in Dubai for Zane’s sake because it eases his burden. There is less temptation for him. Yet, this law does little to instill a sense of self-restraint for those that have to fast for religious reasons.

As for appreciation… well, that could be an article in and of itself. I view food so differently now. Zane’s four short years on this planet have taught me what it means to have true human endurance. Food is the center of our lives. Almost every single one of our social interactions revolves around it. Most people obsess with food in some way, shape or form. Dieting and food are multi-billion dollar industries. Media images inundate us and make us crave it. We celebrate with food, reward with food. We even grieve with food. Living life every single day without food takes pure unadulterated strength when you can smell, see and even hear it around you constantly. Our bodies were made to consume it. And yet, despite what he can not have my son is (thank God) happy. His illness has gifted him with empathy and kindness toward others. He has a self-awareness that most men don’t achieve well into their forties. I thank God each and every day because I am so blessed to be his mother.

So, now fasting is not just about religious obligation, sacrifice and spiritual purification. It is an act of solidarity. It is my reminder to myself what my son and other young children like him (mostly boys) must endure every day of their lives without respite. I fast and pray that God will ease their suffering and pain. I pray that God will make their fast an easy one. And I always try to keep the focus on what we are blessed to have rather than what we have to live without.

Thankfully that is easy to do with Zane. Recently, he looked into the sky and told me that he thought the moon really liked us. “How do you know?” I asked. “Because it follows us everywhere we go,” he said.

Nancy Mahmoud is a former New York City lawyer who now dedicates her time to raising awareness and helping to find a cure for eosinophilic gastro-intestinal disorders. She is currently based in Dubai, UAE.