This race is #9 of my 12 planned races for 2017 and my resurrected project to dedicate each one to someone with ALS who has inspired me. In this case it’s the whole family.
Early on after my diagnosis of ALS, when I was feeling particularly depressed and prone to self-pity, I would turn on NPR and force myself to listen to stories about war, refugees, and tragedies in far off places. I needed to acknowledge that life could be much, much worse than sitting in my car, safe, with my most immediate concern being DC traffic.
So, 3 years later, when I heard that there was a Syrian refugee whose husband had ALS working in the Whole Foods in Cary, I wanted to meet her.
How did I hear that? It’s one of those stories that makes you realize we’re all connected in crazy ways…usually through those people generous enough to reach out and help others.
Sulaf and her teenage daughter were profiled on 60 Minutes in October 2016 as an example of refugee families approved to come to the U.S. The piece explained that 1% of all refugees seeking resettlement would be approved (obviously, this was before the “travel” ban reduced it to 0%). The families were subject to 18-24 months of waiting and multiple screening interviews with Homeland Security, looking for inconsistencies in their stories.
Dan Thomas, general manager of the Whole Foods in Cary, saw the 60 Minutes piece. It was the morning after his pastor admonished the congregation, “Don’t pray to God asking for help with your problems. Pray that He will tell you how you can help someone else.” That night, he had a dream about helping Sulaf’s family since she had said she would be resettled in North Carolina.
The reporter asked what she knew about North Carolina. “I don’t know. I don’t know. Nice…nice city.”
Dan’s friend, Kim, reached out to Sulaf on Facebook. Kim helped her family with basics, Dan gave her a job in the bakery.
Dan is now helping the Team Drea Foundation with organizing the first Cary Cornhole Classic at Waverly Place on October 29th. He secured us the venue and donated food at our “Giving Grill” at the Embers concert where we made $1,500.
And he introduced me to Sulaf.
“You don’t have Lou Gehrig’s like my husband. You must only have ALS,” was the first thing she said after giving me a hug.
I spent five minutes trying to convince her that they were the same thing before opening my laptop and going to The Source of All Knowledge (Wikipedia) to show her both words in the same sentence.
“You’re not like him,” she said again, shaking her head. “You can move everything. He could only move his eyes.” She said they would go through the alphabet one letter at a time and he would blink when she got to the right letter.
“How did it start?” I asked.
They lived in Homs, Syria, and her husband, Ahmad, would patch up their neighbors who were injured in the conflict. He was a dentist, but could help sew up wounds and change bandages.
One day, the government kidnapped Ahmad for helping the “rebels” and tortured him.
“They put electricity here and here,” she said, pointing to her arms and chest. They also held his head underwater and beat him up.
The next day, Sulaf paid the government to let him out of “jail” and they began making plans to flee with their three children (the fourth had be killed in the conflict) to Jordan.
A month after arriving in Jordan, Ahmad began to have trouble walking. It kept getting worse so his brother took some of his blood to a doctor in Germany to have it tested. This part is a little fuzzy to me (since there is no blood test for ALS), but it sounds like the doctor told him that, based on symptoms, if it continued to get worse for six months, it was probably Lou Gehrig’s disease.
Ahmad continued to decline, but it sounds like he had good medical care in Jordan, including a feeding tube and a trach, before he passed away a year later.
Since she had repeated her personal philosophy several times (“God won’t forget anyone”) by that point, I asked her a tough question:
“How do you reconcile what happened to your husband – being tortured by the government and getting ALS – with how you understand God?”[It took a little while to communicate this question because she didn’t know the word reconcile but with Google Translate, we got there.]
“In my religion, we see that everyone has a fixed amount of time. Maybe I walk out and get in an accident. He was hurting. And if he lived, maybe we don’t get to come to America.”
She’s right. 60 Minutes said Homeland Security focused on female-headed households, along with those threatened with violence and in need of medical attention. That also worked to their advantage: Sulaf’s then 4-year-old son is autistic and they were considering making the dangerous trip to Europe by boat to seek medical care. As 60 Minutes explained:
She told us if she tried to cross the ocean to Europe and they made it, they made it. If they died, they died. There’s no difference between death and life in this place. She says she can’t work, she can’t educate her children, she has no opportunity.
Sulaf and her family have now been in North Carolina for a year. Her son has gotten treatment and is going well (“not perfect”) in school. Her older children go to Cary High School. She said sometimes she runs out of money and a check from a stranger shows up in her mailbox.
“God won’t forget anyone,” she said again.
Her wish for me is to “not think about my husband. You are not like him. You have love and a good husband and family and medicine.”
She’s right on most of that (medicine? eh, kind of…), but I WILL be thinking of her husband and her family tomorrow at Ramblin’ Rose Chapel Hill, which I will be racing for the fourth third time since my diagnosis (2015 was our dri-athlon). This is my favorite race of the year – the one that changed my life.
I’ll be thinking the big thoughts: how we’re all connected, how we all have a fixed amount of time here, the horrors we can inflict on each other and the generosity, how God won’t forget anyone, how very lucky I am to be living safely in this country and doing this race, and how DP and I can help Sulaf and her family. If you want in, let me know 🙂