Around thirty years ago, a friend of my dad’s helped me out of a jam.  I had seven bucks to my name, and my car was dead in the middle of Kansas cornfields.  But this friend of my dad’s got into his truck and drove the 16 hours to tow me back to college before classes started up again.

I barely knew Jeff.  He was my dad’s golf instructor and had been a pro for awhile.  That’s all I knew.  I couldn’t get my head around why he was doing this.  A huge imposition for a kid he’d met once or twice at a wedding.  Maybe he owed my father something.  That’s how my mind worked back then--a debt owed, a favor done, and the bill was settled.

We got to know each other a bit on the 14-hour drive back to Urbana, but he was generally quiet and focused on the road--it poured most of the drive.  He did tell me at some point that someone had helped him out of a jam when he was about my age, but he wouldn’t elaborate.

“And?” I pressed.  “And that’s it.  He helped me out.”  We drove on.  “What he did for me isn’t important.  What’s important is that he did it.  That’s my cross to bear.  I pay back when I can.”

That reminded me.  Who was paying for all this?  The gas, the tow, the hours.  I had, like, seven bucks he could have, and maybe a few bucks back at the dorm.  Was my dad paying him back?  He sort of laughed to himself.  “You are,” he said.  “But I’m broke.  I don’t have any money.”  “Nah, that’s not what I mean.  You’re paying me back right now.”  I considered it--I’m still not entirely sure if I understand.  “If you feel it’s not enough, well... maybe you now have a cross to bear.  Then you’ll do something for someone someday.  And so on.”  Cross to bear--those were the words he used.  They haunted me for a long time--they still do.

I’d like to think I’ve done a few no-questions-asked solids in my 48 trips around the sun, but the truth is, I’ve gotten way more than I’ve given.  Maybe that’s the nature of paying it forward.  I think of all the people that helped me in my life without asking anything in return, and it’s almost overwhelming--it’s like how they say to count your blessings and you come to realize how greatly they outnumber your problems.  I think of Jeff who got me out of a jam and taught me something about repaying kindness with kindness.  Where and when and to whom?  It didn’t matter.  Pay it forward and you pay it back.

I think of all the people that helped me when I found out Max had NF2.  I think of the one who listened to me frantically recount the last 6 months of my life since our diagnosis.  I think of the one who talked with me at length and put me in contact with other parents of children with NF2.  And I think of one who taught me and my wife not only about the practicalities of having a child with NF2--where to go, what to do next--but how to just get on with it now, and how to give back when we were ready.  I want to say thank you to them, and thank you to all of the people who advocate for NF families.  You know who you are.

I want to thank the NF Network for the opportunities that they’ve given me to help pay it forward.  Thank you for letting me share mine and Max’s story on Giving Tuesday.  Thank you for letting me advocate with you on Capitol Hill.  Thank you for putting me in contact with other families who are dealing with the same impossible decisions and helping me find a community.  You’ve helped me pay it back by paying it forward.

Now to be a bit more pragmatic.  I want to mention two things that I’m doing with the Network.  I’m acting as sort of a representative for the Inspire website--this is a great forum where people from all over the world come to discuss NF.  You’ll see me posting there, but I encourage any of you who are reading this to jump in if you have any advice, want to share your story, or just say hello.  It’s powerful to know we aren’t alone.

Also, the NF Network and I are working on bringing back a Kids/Teen Game Night online this spring!  Max and I are huge gamers, and we’ve been running virtual game nights with his friends since the pandemic started and it has been an absolute blast.  We started by playing Dungeons and Dragons, but due to how time consuming it was, we found ourselves having more fun by playing Jackbox types of games - Codenames, Gartic Phone, and Skribble.io.  These are all party-type word games or drawing games that are non-competitive in nature.  And the best part of it is that all you need to play is your iPhone or iPad and some way to use Discord (voice program) so we can all chat and see the game master’s (mine) screen.  We will have more practical info when it starts up.

Finally, I want to say thank you to Jeff, who, if you’re reading this, I just want to say, I’m still trying, old friend.  I owe so much to the past kindnesses of others.  Thank you for showing me how to pay it forward.