Two

Pain: it's a battle that Len wages daily.  He never wins entirely, but he's learned some strategies along the way that allow us to live most days without feeling like we're subject to pain's every whim.  It was a frustrating process to determine the main triggers and to match those with the most effective responses or preventions.

We've had a few examples in recent weeks; a few hours on a cool, windy beach caused the shoulder to spasm and made the pain climb four points very rapidly.  The next day was a recovery day; usually involving quiet isolation and as much rest as possible.  The pain dropped back to a manageable level by mid afternoon allowing us to resume our activities with family.

Sundays are another good example.  I wasn't consciously aware until recently that I guard Len's left shoulder.  If we're in a situation where people may not know of Len's pain, I'm usually at his left.  In church I am always at his left, preventing accidental jostling.  Recently we switched from a drafty pew to one less so or so we thought...  This past Sunday the fans and air conditioning units were blasting from every direction.  The pain spiked rapidly. Unprepared and with nothing else to hand, I grabbed a thin hymnal from the pew, wrapped myself around his shoulder and held the hymnal against him to stop the blasting air.  It helped some, but not enough.  Since we had plans with family that evening, it meant wrapping Len in warmth for as along as possible in the hopes that a long nap would pull the pain back down and not cut our evening visiting short.

I refer to Len's pain issues as a battle because it is.  We do what we can, retreat when we need to, do our best to avoid being 'ambushed' (like Sunday) and take as much time as necessary for Len to recover.  Pain limits Len's movements as a man who would much rather be doing more physical things; it limits our movements as a couple when plans need to be cancelled or rescheduled to allow for recovery.  We are so grateful that, at this point, most days are very manageable, thanks to his medication and the preventative steps we take.  Even with that, however, pain is a daily reality and probably one of the biggest ways in which NF1 has changed Len and our life together.

P.S. Len has agreed to answer any questions you might have about NF1 and how it does or does not affect him. Please feel free to leave a comment with your questions, or send us an email at lifeastwo@gmail.com and we will answer them in the next installment of The Face of NF1.