Saturday, November 30, 2013

Four years and one word...THANKFUL!

It's been such a LONG time since I've posted on this site and I'm SUPER excited to share that for at least the last year it has simply been because I've been too busy LIVING.  And not just the breathe in and out, heart pumping kind of living but actually LIVING.  The past year has been the best yet in this journey.  It is still trying and sometimes VERY hard but so much better than before.  I'm playing catch up.  I can't seem to do or play enough.  There were so many years that those things weren't an option, and to be honest, didn't seem like they would ever be again that I am certainly trying to make up for lost time!

Let's catch up... last time we chatted I was in excruciating pain pretty much constantly.  My 'fix' I last spoke of, in fact, didn't work and very soon after I was back to pretty much constant, agonizing nerve pain. To add insult to injury, it seemed like every time I turned around there was more to add to my already overflowing plate of health problems.  Definitely to say that that was a rough time for me would be so much of a understatement.  I was trying to navigate alone with the mental attitude of "I got this" and just a bit of too much competitive spirit in me as well.  If I was going to have all these things wrong with me, if I had to lose so much of what made me, me... I was going to be the best at it!  I know, crazy thoughts from a brain tumor chick.  I was going to recover faster, better, and more efficiently then anyone had ever seen before.  In short, I was going to be the BEST brain tumor chick out there (I know more serious craziness).  When things were clearly not going my way and I continued to lose my battle to stay who I believed I was, I crashed... hard.  The blame (in my mind) rested squarely on my shoulders and that is an awful lot of weight to bear.  I should have been stronger, I should have done it better, I shouldn't have allowed these things to happen to me... as if I had absolutely anything to with any of it.  I mean, I couldn't even deal with the horrible pain I was in like I wanted to... I spiraled and all downhill.

I could no longer keep up the facade of a super bright and shining face in the midst of such tragedy.  I couldn't pretend to be taking this all in stride.  It wasn't what was expected of me from others, that was a weight I put squarely on myself.  I am solely to blame for such crazy thoughts.  I am a giver by nature. (Before you go thinking "wow, brag much?" I don't feel like that's a particularly good trait) I wanted everyone around me to be comfortable.  I wanted to make everything OK for others.  I found myself, in the beginning of this journey, consoling everyone around me, even while I fell apart on the inside.  Listening to everyone's version of how they 'just knew' why this had happened to me and how 'it was challenge I needed to have to better myself' was a special kind of trial.  By special, I mean pure hell.  I've said on many occasions that I was going to write a book on what NOT to say in these circumstances.  In all honesty, I know that most of these people that said these things and things like them meant no harm.  I know that it came from a place of goodness, belief systems, and also just the pure "What the crap does a person even say to this?".  However, at the time 'knowing' these things did not help the special part of hell I felt like I was in every time I got cornered into these conversations.  I smiled my biggest smile.  Told my standard answer, "Everything is going to be fine", and continued to listen because obviously they needed someone to talk to about MY PROBLEMS.  Why I felt like it was OK for that person to be me is a question I will never be able to answer with an answer that makes any kind of sense.  Outwardly smiling and acting 'fine' and inwardly screaming at the top of my lungs for someone, anyone to help me escape this hell that had become my life.

Finally, after a significant time of "what am I suppose to do now"?  I got myself up and walked into a therapists office.  BEST DECISION I THINK I'VE EVER MADE!  I know most people don't discuss such things and seriously, a year ago I would have been mortified if anyone knew but times are a changing and it's NOTHING I am embarrassed or ashamed of.  In fact, I'm pretty proud of it.  It was one of the hardest steps I've ever made... to admit I couldn't do this alone.  I couldn't push through my rock bottom.  That I hurt, both physically and mentally, and I didn't have the answer to fix any of it.  Lucky for me, I struck gold with my girl.  That's what I'll call her... my girl.  The first day I went in, I told her about the brain tumor and before I could even get to the rest of the story she was telling me how sorry she was and that she wished I hadn't waited so long to see her.  I, politely, told her I wasn't finished, that the brain tumor wasn't the 'end' of all that had happened to me.  She sat back and listened more.  After I went through each thing (diagnosis) that came next she would ask, "am I up to date now", I said "no there's more" and she continued to listen while I explained the sheer horror that had become my health and exactly where these diseases had taken me.   By the end of just telling her all that had happened to me, we were both sobbing.  Seriously, people I struck gold with her!  To say that she's helped me get back up would almost be insulting.  SO MUCH MORE!  I have a wonderful group of friends and family who are truly my support people and any one of them would have been more than happy to listen and I did try that but I was a part of their life, and while I spoke of my pain I could not think of anything other than how much this was hurting them...I couldn't stop myself from desperately wanting to help ANYONE, especially loved ones, to not hurt.  Self sacrificing... a very dangerous game.  My girl does not coddle, she does not give me lip service or tell me what I want to hear.  She tells me how it is, matter of fact, she bottom lines me. I've learned to love that.  I've learned that's what I needed, only by someone I couldn't be mad at for very long.  She calls me out on my wrongs and has helped me to become a new version of myself.  Not the same, it will never be the same, but good too.  I have managed to find me inside this torn up body, make choices that are mine, that I own, to make a life that I love and am so proud of.  It's like I'm living out loud and it feels good.  So, in turn, from my girl, I'm learning not to give lip service, to not tell people only what they want to hear, that it is perfectly OK to not be what everyone else wants for me but to figure out who I am and what I want.  Those decisions are not made easily and while I know that some of them have truly hurt loved's never good to live someone else's version of life.  If there's anything this journey has taught me it's that we only have one life... and at the end, whenever that end comes... wouldn't it be a shame to wish you had done it differently?!

"Lose your life and you'll find it.  I've lost my life.  Everything I've ever planned and dreamed for myself is gone.  Somehow, with it all gone, my life is emerging.  I don't know how the hell that works, it just does.  It's still a love story.  Love [of all kinds] still wins.  Love and redemption come in so many shades"  -author unknown

Tomorrow marks 4 YEARS!  Four years since I was a girl lying in a hospital bed (unconscious) and not having a CLUE about the ride my life was going to take.  I thought brain surgery was THE struggle and the battle, once I got that out of the way...the rest would be cake.  I have NEVER been so wrong.  If I could say one thing to that girl laying in that bed with a swelling brain and a brand new hole in her head it would be to... hang on, this is going to be a doosie!  A doosie, but so worth every ounce of work you're going to have to do to find that girl you were just a month ago.  My 'D' day has always been a struggle.  It's a tough day that is usually spent reflecting and trying to come to grips with what has happened.  October 29th 2009 was an awful day.  The worst kind.  October 29th 2013, however, passed without any recognition what's so ever.  I forgot!  I didn't even realize until several days later.  That was a pretty awesome first.  I was too busy living!  Who knew that would EVER happen?!  I certainly didn't!  November 30th will forever be a new birthday, a second chance on life, a gift of the best kind.  The gift to keep breathing.  The gift to emerge from surgery (in a hell of a lot of pain) and live another day.

This November 30th is bitter sweet.  It is all of the things I mentioned before but, ironically, just a few days ago I had a scan and received that dreaded call a few hours later.  My disease creates tumors in my brain, spine, eyes, and kidneys and while for at least 4 years I've had the brain and spine boxes checked, I've been fortunate in that my eyes and kidneys (although I have a separate and ever so lovely kidney disease from the brain surgery) have been clear of tumors.  Not so anymore.  There is a tumor now invading my right kidney.  I don't know what that means for my journey other than it's obviously ongoing.  I will likely see my Kidney specialist in Jacksonville very soon.  I have read the stats, I know what this has the potential to mean and in an effort to be completely honest, I'm scared as hell.  However, since it's also the holiday weekend, it is currently just a waiting game.  Worst part.  This could be a minor bump in my rosy new road or it could be a complete detour.  We will see.  We will hope.  I will be strong.  Not the self-sacrificing strong, not the competitive strong, but the get up first thing yesterday morning and call my girl for an ASAP appointment strong.  It's a new kind of strong for me... but I'm getting used to it. My girl and I will chat first thing Monday morning and she will not tell me what I want to hear, she will not coddle me, but she will get my head prepared to fight this new fight. That's what I need and that's what I'll get.

It's great to me that November 30th this year comes just a couple of days after Thanksgiving.   That's what I feel this year.  Just thankful.  Thankful for help.  Thankful for life.  Thankful for the parts of health I still have. Thankful because regardless of how hard my road has been there are others that have it so much worse.  Thankful because there are countless others who have fought my same battle and lost.  Thankful for the bright spots in an otherwise tough road.  This time I will once again be strong, I will smile through a good part of this process, but it will be because that's just who I am not who I feel I need to be.  I will also, I'm sure, have weak moments, sad times, and just pure hate going through any of this again and that's OK too because that is also who I am.  I'm good with that and for that I am most thankful!

***Side note: It would be very wrong for me to let you assume that while I thought I needed to travel this journey alone, I was in fact not alone in my fight.  There have always been family, friends, and friends that are family behind me, helping me, routing for me.  I don't tell much of their stories here simply because they are not mine to tell. I signed up to make my journey semi-public and in doing so I feel as if mine is the only story I have the right to tell.  Truth be told, it's the only story I know.  I cannot imagine what it's like to watch a loved one go through the fight I had to so I won't pretend that I do.

1 comment:

Shawna Cabatu said...

I'm thankful for your openness to share your heart and to publish your story. Love you... <3