Welcome. It’s a word I’ve used too much lately, because it means someone new is joining the exclusive, online community of those who love someone with HLH. As one of the members put it, it’s the most wonderful group you never wanted to be a part of. I distinctly remember the jolt of welcoming the next new member following Megan’s somewhat sudden recovery. My surprise was absurd, of course. I was still in the self-absorbed stage I’d moved into to marshal all of my resources toward my daughter’s survival, and it hadn’t yet occurred to me that the world outside would continue on its own course. It was sad to realize that others would be following the path we had so unwillingly blazed.
My next surprise was how much help I could be to the newcomers, from my own crash course in HLH diagnosis and treatment. Though I realize that HLH is exceedingly rare–maybe 100-200 new cases in the U.S. each year–it was still alarming how much ignorance and misinformation new patients and their families face with their doctors. Don’t they all have at least the same access to the hundreds of HLH links I read on the Internet? While I hesitate to play doctor, I have gotten quite comfortable providing new patients and their families questions to ask and encouraging them to play a strong advocate role in their medical care. The stakes are high, and the combined medical knowledge of our community rivals that of all but a handful of HLH specialists in the world. I’m sure each of us would willingly give up that knowledge to return to the time we’d never heard of HLH.
The best part of our community, by far, is the support we provide each other, though most of us will never meet. These are people who always understand, who know the intense hopes and fears of loving someone with critical illness…marathon illness, which takes months or even years away from home, from work, from family. People who know what it’s like to celebrate holidays in the hospital. People who don’t get tired of us talking about blood counts and scan results. People who provide empathy when we just need to vent, because they remember when doing the same saved their sanity. It’s a global community of souls…from Croatia, South Africa, Canada’s Northwest Territories, Australia, Arkansas. I look forward to the day when a cure means no more new members. Until then, welcome…we are here for you.
“Each day holds a surprise. But only if we expect it can we see, hear, or feel it when it comes to us. Let us not be afraid to receive each day’s surprise, whether it comes to us as sorrow or as joy. It will open a new place in us, a place where we can welcome new friends and celebrate more fully our shared humanity.” –Henri Nouwen