In Case You Are Jealous of My Friday Night

People often comment on my Facebook posts (especially fellow ladies!) saying what a fabulous life I have. They see me gliding from event to event, effortlessly, cozying up to public figures and instagramming delicious food (and coffee drinks)!

I don’t blame you all for commenting, or even feeling a twinge of jealousy or resentment. It’s natural, and to be completely honest, the same thing goes through my mind when I’m instagram- or Facebook-stalking my friends and colleagues.

But, do you want the brutally honest truth? Because here it is.

11223537_1032845593471332_6071060363305602142_n

There’s A LOT that gets filtered out of my life when I post on social media. Like, a hell of a lot. When I publish a photo of me in a gorgeous dress with my hair and makeup flawlessly done at an event enjoying the company of others, here’s what you don’t see:

You don’t see/hear the laughably-inevitable meltdown/pity-party two hours earlier about not being able to wear the shoes all my other girl peers are wearing (heels, stilettos, etc.).

You don’t see the panic attack I’m having as I’m rushing to make it out the door on time and have to stop and raid every drawer in the house for urinary catheters. Since they are delivered and I need a doctor’s prescription, it’s not like I can waltz into a public restroom with a few quarters and get a catheter out of a dispenser. (But you can easily find tampons or condoms, no doubt!)

You don’t see the frustration I feel when trying to find the perfect purse to match my outfit— that is, one that is sleek enough to carry easily but that will fit at least 5 catheters (because when your LIFE depends on using a plastic tube every three hours, there’s no room for guesstimating. Better to overestimate than…God forbid. And if I have an infection…forget it.)

You don’t see me up all night with indigestion because my digestive tract is much slower than everyone else’s. That expensive dinner I had cost me a good night’s sleep.

But most of all, you don’t see the struggle it is as I try my best to “fit in” (say what you will about being an individual, but don’t kid yourself— EVERYONE wants to fit in) while treading the delicate balance of staying “healthy” (whatever that means, because I haven’t felt “healthy” in many years) and being able to breathe easy and have some semblance of a social life.

That all being said, I know how truly fortunate I am. I have opportunities that many of my peers with spina bifida do not. I don’t lose sight of that.

But, today is Friday. Tonight, God willing, I actually am going out on a Friday night alone (a rare occurrence!) to attend a social / professional function. Just a while ago, I got off the phone after talking to my medical supply provider and my urologist’s office back-to-back. It feels like I am constantly having to negotiate how important a life-saving product is to me. Negotiate how many times a day I am allowed to pee. Can you imagine having your visits to the bathroom regulated? These are questions I actually get from my doctor’s office. (They will actually insist I drink more water, and then ask me why I use so many catheters!)

Not to mention my private medical insurance, which makes me jump through bureaucratic hoops just to be able to receive these bare necessities.

I don’t want to be calculating. I don’t want to be counting catheters. I don’t want to leave half of my meal untouched because I’m afraid of indigestion. I don’t want to walk into the place and immediately scan where the bathrooms are. I don’t want to wonder where I’ll park my wheelchair.

Tonight, I just want to act my age, and know that I’ve earned it. Tonight, I don’t just want to LIVE, I want to feel ALIVE, and know that my posts on social media actually reflect the fabulous reality.

On Sitting Alone at a Starbucks on a Sunday

 

 

Unknown-1

Let me preface this post by stating that I rarely eat alone. Or drink alone. Or think alone. In fact, I usually hate being alone. In any situation. More often than not, being “alone” to me, means listening to my Pandora stations or binge-watching videos on YouTube. Even reading by myself is difficult to do.

 

But, today I found myself drinking a latte at Starbucks. Alone. Don’t misinterpret me. I needed this “alone time,” badly. I needed time to think and feel and wallow and assess and reassess and analyze and reflect. The thing is, the longer I sat at that Starbucks alone, yet surrounded by strangers, the more I realized I have been doing this to myself in many ways for a very long time. A very long time. 

 

I’m not an introvert, and I’ve known all my life that I thrive when being surrounded by people who love and support me, and who enjoy working with me.
So, what happened? Well, what usually happens? Life situations change, or people change. Or in my case, it seemed like both. At some point, as fiercely as I loved the people in my life (and I have the innate capacity to love fiercely and loyally), I realized I have long outgrown the dire need of acting like a 21-year-old. Why? Well, for starters, I just turned 29. My interests, though much the same as before, have evolved. I have evolved. 
 
I have long prided myself on purposefully seeking out friends who share my somewhat sophisticated, even precocious interests. I have always enjoyed spending time with the “grown ups,” and even as an adult, it pains me to say that I am quite often afraid of seeking out my peers. Perhaps it’s just “only-child syndrome.” Or, perhaps not.
So, the invites would come, and I’d turn them down out of cowardice or pure lack of interest in said activity. But the more invites I turned down, the less the invites came, and pretty soon, I began to feel isolated and ostracized. My closest “friends” felt more like strangers, and it made every single one of my attempts to communicate with them feel more like a confrontation.

 

It was then that I began to see it. Weekend after weekend of events I was not invited to. Social activities in my social circle I was excluded from. Friends who had been like family turning their backs on me.

 

I started feeling like I was back in grade school, or in high school, during those incredibly painful and humiliating years of ostracism and exclusion. As much as I’d like to say that I’m older and wiser now, and that I know better than to get caught up in the petty toxicity of social media, I wasn’t above it. I’m still not.

 

No matter how many times I would reach out to my friends, they would not reciprocate. My own invitations, my own attempts at repairing a grossly misunderstood rift, went callously ignored. And it’s nothing I hadn’t experienced before in my life, since early childhood.

 

It hurt. It bled. And whenever I would think I was already numb, another weekend would pass and the tears would begin to flow all over again.

 

Now, with open eyes and a heavy heart, I truly realize what was so simply yet accurately expressed in the film “The Jane Austen Book Club”: High school’s never over. 
 
Just because I quickly grew tired of the partying and booming music of my twenty-something peers, doesn’t mean I grew tired of them. 

 

But to my chagrin, I guess I’m still that girl. That girl who is forgotten when the sleepovers are planned. That girl who isn’t invited on road trips or to house parties or even Sunday brunches. That girl who has all but given up and now spends her weekends praying and spending time with those who truly adore her– her parents.

 

That girl who wants to change the world but can’t seem to find anyone to have coffee with on a Friday afternoon.

 

That girl, I see, has been proverbially sitting alone at a Starbucks on a Sunday all her life. Waiting. Hoping. Crying. Grieving.

 

The irony of it all is, this girl is often the envy of others who follow her Facebook page and complain about what a fabulous life she has.

 

I suppose since we tend to post about what we do and not what we don’t do, it’s an all-too-simple mistake to make.

 

Yes, I know I have an amazingly encouraging extended network– family and friends that live in other cities, other states, other countries even. Some, I have only met on social media! Sadly, most of these people are too far away for me to invite to lunch (or coffee!), but I will never stop appreciating their unconditional support and love. And yet, I still feel alone. 

 

That girl who is sitting by herself at the Starbucks, staring at a nearly-empty, now cold cup of coffee, is tired of waiting. She picks it up, throws it in the trash, and walks on.

 

The numbness has closed in on her once more. For now. But it’ll be back.

It’s never over. It never stops hurting. I’m never immune.