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Tuesday, August 27, 2013


Through the years my journey with NF has afforded me to meet other people with this disorder and with the exception of losing a few to death, for the most part, they have remained in my life.  I am very grateful for that because the feeling of isolation on top of the many challenges of this condition is too much without the proper support.  Although I get support from family and friends, my NF friends understand in ways the unaffected can’t (though not for lack of trying).  And they have their own challenges that I couldn’t possibly understand either.

My NF friends, most of whom I have only met online, are helpful to me in ways unmatched by all the drugs, acupuncture, BioLateral, drumming, etc.  They take some of the pain away just by listening, by expressing themselves to me in emails or in a comment to a post.  We share war stories as well as days of blessed respites from the pain.  We discuss other things as well; our friends, pets, books, movies and anything else we can do at home.  Most of us can’t drift too far afield; some of us get around on power chairs, some can’t sit for long (like me).   But we aren’t much different from anyone else in most ways.  It’s just that it takes us much longer to do the “normal” things (like meal preparation, showering, etc.).   And we remind one another to be grateful for what we can do. 

One person in particular means the world to me because her daughter is dealing with the same horrific pain I am and she’s only in her twenties.  And still her mom takes the time to tell me G-d loves me.  She encourages me not to feel guilty about writing something negative.  She supports me by sending me cards and even gifts.  All this while taking care of a daughter’s whose pain must split her own heart in two.  Watching a child suffer is unimaginable to me. Yet this woman also takes the time to reach out to me.  She has been doing that for years.  Her faith in G-d is strong and she reminds me of His love for me.  And I need to be reminded.

Being grateful is a tough one for me when I’m hurting.  And yet, that’s the time we should do it most.  I know that sounds crazy, but the only way to really change things is to start by accepting things the way they are.  Really.  People think if you accept that which you don’t want you are giving up.  That’s not the case at all.  Trust me on that one.  The only way out is through.  Which means facing things head on.  Now, accepting my condition doesn’t mean the pain will magically disappear.  Heck, if that were the case, I wouldn’t need this blog.  But if I accept it, my attitude will be the thing that changes and my experience of the pain will change as well.  If I could only hold on to that knowledge!  But when it takes over, (the pain), it takes over completely.   And when I have a day that isn’t as bad as they normally are, I give thanks constantly and try not to anticipate the return of the not-so-pink panther.

I sometimes think about the people who come and go in our lives; a friend I haven’t seen in five years came by yesterday.  She was diagnosed with blood cancer a year ago, but so far, her symptoms are mild and they say she could go 20 years without further symptoms or it could start rearing its head a lot sooner.  She was one of the first people I knew when I moved here 27 years ago.  Then she got married, they adopted a couple of incredible girls from China and they have been living a ferry ride away for six years now.  I realized when I saw her just how much time has gone by and all of the tears and laughter that went with it.  In those ways, I am no different than anyone else.

Looking for those similarities makes me feel less freakish.  Being in pain and having very limited mobility tends to make one forget that other people suffer too, many a lot more than you or me.  All together now:  Roof over head, food in belly, access to medication, friends and family.  I am blessed even though I am in pain.  And for those of you who don’t have the things I mentioned, you too, are blessed. Looking for, and finding those blessings can be a challenge.  Never stop looking until you find them.  Then never stop giving thanks for them.

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