Amber's Abode

"well, it just sucks to be you..."

I got some news today which threw me for a loop, even though it feels like it shouldn't have.

On Friday night, my uncle Andy was riding his motorcycle without a helmet after dark when he hit a deer.  This sent him spinning, and he hit some concrete, and died instantly.  He and my aunt were living apart to figure things out, but they were working on it.  Anyway, they tried to call her on the cell phone they found on him, but the battery was dead.  So my aunt found out the next day when she happened to come by the house he was staying at and see police cars.

So why does this feel like it shouldn't have thrown me?  I didn't know uncle Andy.  He was my Aunt Heidi's second husband, and I haven't seen her for so long that I never had the pleasure of meeting him.  They've been married for at least 10 years.  Sigh.  Heidi is one of my favorites, if not the favorite in memory, because she is my dad's baby sister, the youngest of seven, and when I was little, I always felt she was the closest to my age, and therefore the most with it.  We even graduated from the same high school, although she when I was like seven or around there, and me 15 years ago in a few days.  She might not know she was my favorite because it's been forever since we got to be together, but she was.

That's what throws me for a loop.  Everyone is there for her right now, both of her parents and every brother and sister that can make it away from work.  And a handful of her nieces and nephews.  Except for me.  When I really want to be.

Why?  This fucking disability.  The same thing that keeps me from seeing most of them regularly, the same thing that kept me from properly growing up with and getting to know my cousins, and has made me miss the bulk of family reunions, celebrations, and sadness.

It's also the same thing that prevents me from traveling at will, on my own, or with my boyfriend, so that I will miss the bulk of those family reunions, celebrations, and sadnesses as well.  Hell, I can't even lay beside him when I want to, let alone go anywhere with him that doesn't involve walking or the bus.  And it hurts more because I know that affects him too.  All of it, the traveling and the simple things.

I don't know if it bothers him as much as it does me; he appears so much more Zen about these things than I am.  Annoyingly so sometimes, because I need to know that what I'm feeling isn't just me.  But I have never attempted to change him or his reaction to things, and I'm not about to start now.  But I know I strongly wish to be as strong as he is.

Poor guy.  He doesn't know what to tell me, so the only thing he says is that sometimes, life just isn't fair/sucks monkey balls.  I know this.

But does that mean I can't be sad/frustrated/angry about the things that have been taken away from me because of a hand I've been dealt?  I hope not, because I am.  All of the above.  I don't understand why it had to be me or anybody..  And all the people that say this is a gift, most of the time my head knows exactly what you mean.  But for now, fuck you very much, and come back another day, or week, or month, or never if you choose, because if you are somebody that can't deal with questions, even toward God, this is not your blog to read.

Cerebral palsy is not a gift.  It's not a gift not to be able to travel or sleep next to the one who is proud to bear the term lover, even if that's not literally physical at the moment.  It's not a gift to not even be able to communicate traditionally or be left alone for one second with that person, for fear they could start a seizure or stop breathing.  It's not a gift to have to sit and watch what you perceive sometimes as the best parts of life passing you by.  It's a burden that we carry, and that's why we were called burdens sometimes, because people had to carry us.

I'm not saying there is nothing good about life.  The real gifts come from what you do with your cerebral palsy or other disability, or more accurately in spite of it, or maybe if you're lucky, surrounding it.  Like you write a book about your experiences.

Or like my friend Danielle, who despite the lack of privacy or traditional communication, spends as much time as she can with her loved one, and they find their magic in handholding and prayer.  If you want to know more about how she finds such gifts in spite of her limitations, her blog can be found by clicking her name above.

And Daniel and I spend a lot of time together as well, even if it's just to work or play on our respective computers because it's too hot for outdoor adventures.  The stillness frustrates me sometimes, because for someone strapped to a wheelchair, I hate sitting still; but I know the important part, and the part that we will treasure when we remember it, is that we were together.

Danielle might have a different perspective than me, she is generally a lot more positive than I feel at the moment, but she's also real, so I'm sure she would agree with most of what I say about the difference in gifts.  And I look up to her always and quietly nod to her in deference to the fact that we are traveling very similar paths.

And naturally, everyone's favorite stories to tell are the ones where they travel or have other fantastic experiences totally inaccessible to me.  Does the fact that this stings a little when I'm in this frame of mind mean that I should tell everyone to stop telling the stories?  No, because then nobody would ever talk to me.

But I just have to be free to acknowledge that it does sting sometimes, without the fear of somebody telling me that I should be grateful for what I have (because I know this and I am but that's beside the point) or that I should just be waiting for Jesus who will make me be perfect and walking and running.  (For the record, I do believe this, even on my doubting days, and I am waiting for it, I just believe that we should be doing something while we are waiting; otherwise, what is the point?)

So, in this moment, it kind of sucks to be me.  I know somewhere in my head that I will probably wake up tomorrow with a better perspective, although right now I kind of doubt it, because the routine of here never seems to change, especially when I can't leave the house.  But I'm open to the fact that I might, and every morning I wake up and see the sun and feel myself breathing, which is better than I would have had him I had stayed in Oregon.

So I always start out grateful, which is a good base.  Where I go from there is anyone's guess, but my key is that I always look at the possibilities incredulously; and I have the ability to experience and also Chronicle/journal about my experience.  Translation: if I wanted to, I could make eating a grilled cheese sandwich sound poetic.  Giggle.  Well, now I'm laughing again, which is a good thing.

If nothing else, I always wonder what will be written here the next time I write.  So thank you for joining the journey.

Oh, and always wear the appropriate safety apparatus when traveling, and ALWAYS tell people you love them before they leave or you hang up the phone.  And try your best to mean it.  Because, unfortunately, it is true that someday you are going to wish you did if you didn't.

Hugs to everyone and prayers to those who need them.

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