Thursday, May 26, 2016

Who Am I Now?

... aren't I?
Soul-crushing.  That’s really the only word I can use to describe this morning.  I had my disability (appeal) hearing today, and it just goes against everything that I am … except that it is what I am now.

I’ve been having a really hard time accepting my disability lately.  Maybe I’m just living in denial, but I like it there - focusing on the positives, the things I can still do, the way that advocacy can be empowering.  These are all good things, and that’s generally where I (almost) always choose to focus my thoughts and my energy.  But it’s been getting harder and harder to do lately.

That’s because Disability has been fighting me, and it feels like it’s winning.  Over the past 6-8 months …
  • I had to start using a cane
  • I had to get a handicapped parking permit
  • I had to be pushed around in a wheelchair to get through the airport
  • I had to stop working my part-time, flexible, work-from-home job for a few months, and recently had to cut my hours again because even that was too much for me.
  • I had to rent a mobility scooter to get around on a couple of trips away
  • I had to get a chair and have grab bars installed in my shower
  • I had to start using a rollator (walker on wheels) because the cane wasn’t enough
Every one of these instances was like a punch to the gut.  It hurt.  It knocked the wind out of me.  Sometimes, even knocked me down.  But each time, I (eventually) got up.  Each time, I (eventually) found a way to see the positive.  To see how these tools could help me.  What helped me the most, as with any good fighter, was the people in my corner - there for me, cheering me on, listening when I needed, helping out when I needed.  And one thing my sister (by heart, if not by blood) said was just what I needed to hear: 

This does NOT define you.
My hurt, my fear, my feeling of loss has all come with this feeling that I am not me anymore.  I’m not the vibrant, active, energetic, independent, strong, helpful, ABLE person I used to be.  I am sick.  I am disabled.

And today that was all I could focus on.  An hour in my hearing (that felt more like ten), talking about all the things I used to do, all the things I can’t do anymore.  The difficulty getting out of bed.  The problems in the shower.  The challenges from walking … or standing … or even sitting for too long.  The places I can’t go, the tasks I can’t perform.  The treatments that haven’t worked.  The plans I’ve had to cancel.  The people who have faded away from my life.

As soon as I got out of the hearing, I fell into my husband’s arms, crying.  So often, when something bad happens, we don’t want to say it out loud, because that just makes it realThe first time I wrote about my disability, I couldn’t say it.  I explained it, I defined it, I discussed how I fit into that definition… but I couldn’t actually say it.  And today, I had to spend an hour saying it over and over.  My soul was crushed.

But I keep hearing my sister’s voice in my head.  This does not define you.  And I’m trying to let that sink in.  I would never look at anyone else and see only disability.  I see the person, get to know the person.  The body – regardless of size, color, orientation, or ability – is just the vessel.  I don’t define anyone else by what they look like or what they can do … so I need to stop doing it to myself.
Your past.  Your weight.  Your illness.  Your fear. Your job.
These do NOT define you.
So … how do I define myself?  I guess that’s the question I’m trying to answer now.  As much as I’d like to say I’m the same person I’ve always been, just in a different shell, I know that’s not totally true.  Yes, a lot is still there: my heart, at its core, is still the same, and that is what rules and guides who I am.  But I’d be lying (to myself, if not to you) if I said I haven’t changed. 

I’ve been forced learned to slow down.  I’ve learned (well, I’m learning, anyway) to ask for help.  I’ve become more vulnerable, but I’ve learned that there is strength in sharing that vulnerability.  I’ve learned to speak up for myself, not just for others.  I’ve learned more about who my true friends and family are (yes, some I’ve known all along).  I've learned how big the "little things" really are.  I’ve learned how important it is to find people who really do understand … and to do what I can to help that number grow.

So that’s why I write, and that’s where I’m at right now.  I know there is more to me than my illness and disability, but I guess I’m still trying to figure that out: how much of the old me is still here, what the new me brings to the table. 

I guess my caterpillar – cocoon – buttahfly cycle continues!  I hope you'll join me on this journey.  Let's fly together!

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