Monday, July 27, 2015

Human Connection

We ALL desire that human connection.  The feeling when you connect with someone who TRULY gets it.  It's a rare thing in the world of Neurofibromatosis.  And I have yet to meet someone - that sticks around long enough to even begin to relate to what it's really like having NF.

My husband is great.  He loves me unconditionally and tries really hard to get it....But honestly, he never will.  Just like, I will never truly understand what it's like for HIM, being an amputee, after a lifetime of surgeries.

We're ALL different.  We all have our struggles.

I had this friend a while back.  She had NF....And we connected on a level that I had never connected with anyone before.  It was weird, and cool all at the same time.  She got me, I got her and it was, I THOUGHT...A friendship meant to last forever.

I guess I didn't 'get her' enough...And she decided to end the friendship....with no REAL explanation other than that I was too involved in NF and advocating for my kids....And I guess SHE, well....I guess she just wanted to run and hide from it.

(If this isn't true...I know she has full access to my blog and she can correct me, if I am wrong...In fact - I welcome a response)  :)

Anyway...back to what this blog post was meant to be....That human connection.

When I see someone who has NF walking around -- My first instinct is to run up to them, and hug them, as if they are some long lost relative of mine.

I have never actually done that.

Instead, I watch them, like a hungry cat on the prowl.  Stalking his mouse prey.

Sometimes - I say something...Most times I do not.

It's an awkward dance I play in my head.  "Should I....Shouldn't I...."  "What if I offend them?"  "How would I FEEL...If someone with NF came up to me...?" <I'd be HAPPY btw and want to take them to lunch>

Other than CTF walks and other events...I don't meet IN PERSON many folks with NF....So it's really hard, when I do meet them, to know what to do.

So...I challenge MYSELF and YOU...To step out of your comfort zone a little.

Here is a little advice on how to make it a little easier.

1.   Start with a friendly HELLO.  The few times I have encountered folks with NF...I try to break the ice by saying...."I was wondering....I have NF, is that what you have as well?"
(I say I don't overwhelm them, with some LONG name...and if THEY DO have it....They will know what I am saying....if they DON'T have it....then chances are it won't be a big deal...and we can part ways...LOL)

2.  Once step ONE is over....You can take it from there.  Usually when I ask the question....the answer is YES....And I can tell them how nice it is to meet someone else LIKE ME....
Sometimes this part is awkward too because people with NF don't want to be recognized as having NF...So turning the conversation to other things is a good idea...
"Do you live around here?"   "Are u married?"  "Have kids?"  You know, small talk

3.  Finding a common interest is hard when you just meet someone...But sometimes, it happens!  Don't put too much pressure on finding a best friend....LOL  That could come off as creepy.  But put yourself out there, and be awesome.  Be friendly....And you never know what could happen...

You could be making that persons day....!

If you have a good story about meeting someone -- that put you WAY out of your comfort zone, please reply and tell me about it!!


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