Raising Awareness for RSD (and Ziggi's)

Raising Awareness for RSD (and Ziggi's)
The Power of Orange

Friday, November 18, 2011

Dating and the Dystrophy ~ A Love/Hate Story

I am good at being alone!  I wasn’t always, but experience seems to have made me good at things that I would have never thought possible.  (being a smart-ass is another one, but that’s a story for another day.)  I have lived all on my little own for 4 years now.  Not bad for a tall, skinny, crippled broad with abandonment issues.  I don’t have to pick up my skivvies that I leave lying on the floor, my dishes can sit in the sink for an extra day (or 2 … or 3), I can roll around in the fetal position screaming in pain without freaking anybody out, I can drink all of the coffee that I want without be judged, and … I can listen to all of the Glee songs I want to without being chastised.  

On the flip side of that coin is being lonely.  I SO suck at that!!  Hmmmm … ok, maybe I need to rethink that last statement … let’s try this … I’ve gotten good at dealing with loneliness too ... but I hate, Hate, HATE being lonely.  (whew, there!!  much better!!)  So I got a dog and she is a godsend.  However, as much as I love, adore, and cherish Kiva, there are just certain physical and emotional voids that she cannot fill.  

So what did this girl try to do??  If you guessed “online dating” you’d be right.  e-harmony, Match.com, and POF.  I’ve met some great guys but, as you can tell by my current “Miss” status, none of them have made the cut.   I am a woman first and an RSDer second.  I’m a package deal.  I can’t tell you how much I wish that that wasn’t the case, but there ya have it!   The package may be wrapped well and have a pretty bow, but the contents are a bit jacked up … and that’s what bites me in the ass every time!!  I have a huge heart and tons of love to give, but my body can’t always show it.  Every day is a crapshoot and I have a tough time asking any man to take that gamble.  So I deactivated my accounts and started making rules for myself.

I don’t want to be a serial dater, a port in a harbor, or a beck-and-call girl.  I want (and deserve) the love of a lifetime <insert cheesy love song here>.   I want to spend my life with someone, not just my cell phone minutes.  It is not easy being an RSDer, and the man that takes this ride with me needs to be willing to handle the bad days every bit as much as he enjoys me on my good days.   The only way to do this is to spend time with me and learn through living.  Phone calls, texts, online chatting are great ways to get to know how each other thinks, but until we spend a considerable amount of time together, in each other’s presence, he and I will never know how the other one behaves.  I have oodles of faith that I will meet Mr. Right eventually, but I am wary and tired of the Mr. Wrongs.  Is there any wonder why I’m so cynical about dating??   I’m not looking for a man with no baggage … I’m looking for a man whose luggage compliments mine!!  It doesn’t have to match, but it does need to look good together!!

Enter the newly coined term “non-date”.  A non-date is a day long event.  It begins with a handshake and coffee and the rest of the day is spent walking or sitting and talking … and examining baggage.  Not pawing and molesting and opening up drawers.   Did I mention that it takes about 2-3 days to rest my body and save up energy for an excursion like this??  I have to have every wall and barrier in place on the off chance that the man is a freakin octopus with sadistic tendencies.  My experience has been that, because of my looks, guys only want to get me into bed … not giving a rat’s ass about or my heart or the pain in my body.  The non-date is the escape clause.  It’s RSD and me, or it’s nothing!!

I know I have a lot to offer Mr. Right in spite of the beast.  I just need to find that 1 guy to see me for me and not what they want me to be.

Lemme sum up … if he wins my heart, then he wins each and every good day I have to offer and has an upper hand in encouraging me to fight harder for more good days!!  Every triumph over the beast is just that much sweeter with love as the catalyst.  I have found that with the right kind of emotional support, I can even play volleyball again!!  But if he tries to ignore or deny the disease’s existence, not only does he deflate my bubble and deplete my strength, but the bastard is not worthy.

And so I sit … single and happy with the decisions I have made … but still lonely :(

2 comments:

  1. Dating in and of itself is hard enough with the mr wrongs u can come across - or, as we know, the maybe mr rights who turn out to be not so right (which is even harder). But to attempt a daily balancing act between your heart AND rsd, well, hon, u continue to amaze me with your strength - as tenuous as it may feel sometimes- as it shows just what a fighter you are and and i dont mean just fighting rsd. I love that u know who u are, won't stand for bullshit and can still have faith that love does exist. And for that, along with many other things, love WILL find u and he may not be perfect, but as u say: his luggage will compliment yours and when u guys hop off the plane in Jamaica to celebrate your 25th anniversary, you will still be holding hands and laughing - and sporting a kick ass matching set of bags

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