Sunday, January 19, 2014

s t o p

i either did or meant to write about a little boy i saw for speech .... his name was l. he touched my life in so many ways. his life was a miracle. if i shared the post his mother wrote about him and his brothers before i can't find it to share again, so i'll share this. i loved getting hugs from him and playing with his monster trucks. he made every session fun. sadly, he passed away this morning. he has been fighting cancer since august. below is a letter i wrote to s. i'm trying to process the pain that death brings.
 

it's such a hollow feeling ,,,, death. and yet i can remember not one maybe two nights ago praying, 'god, please take l if it be your will, or heal him and help him be at peace.' and god took him?
i feel too young to have seen two people die from cancer. too young to have a 'patient' die. god did the right thing in pulling me out 10 months ago.

i miss mamaw. so much. she touched and changed my life. for the better. always for the better. i miss l. he changed my life too. even while i was seeing him i would remind myself to cherish his hugs - there would come a time when i wouldn't get hugs from him anymore. it's like i was more aware of his mortality than my other patients.

i am sad for his family. sad for his brothers who may not even remember him - they are so young.

i do not like death. not because i am afraid of what happens after a person leaves here, but because of those left behind. they are the ones who have to pick up the shattered pieces and move forward.
i just need to stop for a minute. i need the world to stop for a minute while i process this all. i find it bringing up more and more of mamaw's death.
'i love you forever' she whispered to me. i remember distinctly the forever because i heard her raspy voice say to the others 'i love you.' but the forever she added on mine. i know she feared death. she was never quite sure what lies beyond. i tried throughout my life to teach her some of my beliefs - that our spirits live on, that she will still be herself (and damnit if someone isn't playing oh danny boy in the house!), that she will see her twin baby girls, that jesus waits for her just beyond what our mortal eyes can see, that we'll still know the same people we know here on earth, that families can be together forever - and she told me how amazed she was that i was so confident and comfortable with what i knew. death doesn't 'scare' me so to speak, but it is sad to me. the separation of body and spirit - the separation of us from talking to and being physically around the ones we love.
i have said before and will say it of her always that she died with grace. she died so gracefully in my eyes. she didn't speak an unkind word in her pain. she was still loving and sweet. she was still the grandma i knew growing up only, dying.
and now with l's death. august to january - a short 5 months' fight with cancer where he declined and declined and declined and declined.
i used to worry when i was seeing him, what he would be like as a 10 year old , as a teenager , as a 20 year old. was i giving him the skills he needed to communicate?? would he be able to do well and succeed in life?? and now he's gone......?
 
i'm glad i'm seeing susan tomorrow. i need to talk this one out.

that's what i wrote in my letter. but i want to leave on a note of faith. i know l is safe tonight. i know he is not suffering anymore. i know he is well. i will pray for his family - for their peace of mind and healing during this time. god can still perform a miracle in their life.

Sunday, January 12, 2014

my name is rachel ...

.... and tonight i went into my mom's room and cried and cried and cried.

about many things.

the anger i feel, maybe towards god. how scared i am of the unknown in upcoming tests. my worried-ness in trying and not trying to have hope in the upcoming neurologist appointment. the weight i've gained since being depressed/stressed. my dislike for things i'm asked to do (mostly church wise). how tired and weary and confused i am over this trial of having so many unknowns in my life and my "life plan" thrown so completely off.

the tears were salty and sad. my heart was broken. her words did little to comfort me but echo dully in my ear drums. i left with a casual 'whatever' and in almost the next breath found myself reading this :



i found myself again crying because god had found me and reached out to me and validated me through this blog post. this woman and i have almost nothing in common. but some of the things she said leaped off the page and i knew it was heaven sent.

i want to share what i learned from her.

1) "I envied every story I heard of someone getting terminal cancer.  I imagined my car crashing into cement walls.  I wanted Jake.  I wanted to die so that I would be with him again and feel like I was alive.  The truth is when Jake died, so did I.  I felt like everything good and happy about me was drained out, and I was filled up with pain.  Everything was ripped from me, except my kids.  Our life, our dreams, and our plans no longer mattered, without him they were dead too.  How could I live without him?  How could I make plans, or have dreams ever again?  I remember sitting in a room filled with people and feeling completely alone.  The thought “Jake is dead, how is he dead, how is this my life?  This is NOT my life!” ran through my head 95% of the time. Grief is something that is dark and horrible and eventually can be sweet and peaceful." i have been there. i have wanted to die. and i have been consumed with unimaginable mental and emotional pain.

2)  "But, my family never left me alone either.  They were there for me from the night he died and still, to this day, remain close to help and serve me.  They were a blessing and a huge reason I was able to go on." my family is a huge blessing to me. and her words helped me realize that perhaps they are part of the reason i am able to go on.

3) "This was our new reality ... People say that “time heals all wounds”.  I beg to differ.  Time doesn’t heal, if anything it makes it worse.  It’s been longer since I have seen Jake, and heard his voice.  Longer since I’ve felt the love and strength in his embrace.  But what time does, is helps us learn how to deal with it better and how to cope with our new reality.  Time give us the chance to grow into the person we were meant to be.  I said before that grief can become sweet and peaceful, and that is because of time." i get this and i don't at the same time. i think part of what i need in my life is more distance from this trial - the added benefit and blessing of space and time. but i just have to hope that her words are true! in the mean time, i must (dbt term here) radically accept my new reality. i am not doing that - or am doing it with a lot of resistance. if i will radically accept that where i am is where i am and that this must be where god wants me and that my life is in his hands, then what becomes of me and what happens to me will be handled with much more ease and grace.

4)  “You can’t choose your trials in life, but you can choose how you deal with them.  You can choose to become better or bitter.” she chose to become better. i want to choose to become better, too.

5)  I felt betrayed by God somehow.  Like we had an agreement that I would endure my trial with the understanding that he would prevent anything else bad from happening.  I battled depression (again), and gained weight from all the stress.  But in time, with a lot of prayer, God helped heal my heart out of the whole post this probably struck me the most. i started balling all over again. it gave me a renewed determination to pray with a sincere heart, earnestly seeking god as i talk to him and then, listen.

6) she talks about speech therapy, all of the tests her son, cameron, went through to get the diagnosis he needed, and seizures. all topics that are on my mind and things i worry over.

7) OR, I could look for every blessing, every miracle, and every ounce of help I receive from God and my loved ones.  Sometimes I have to really search and sometimes it is abundantly clear, but I can find blessings in every single day.  I focus on what I can do to improve our situation and do it.  I try not to beat myself up for not being perfect at everything.  I do the best I can and accept that as good enough. so clear and so beautifully written. makes me want to start a blessings journal. see the miracles in every day.

8) The truth is though, the only way I can handle any of it is through the help and love of my Savior and his atoning sacrifice. and truly this is what it all comes down to for me and what i believe : that atonement of jesus christ makes all things right. he has literally suffered all of my sad days, down days, dark days, pain filled days, disappointments, heartaches, mental impairments, physical hurts, anxieties, worries, fears - all of it. and he has found a way out. he has found a way to overcome all of these things - and all the things that people suffer that aren't listed here - and he knows the way out. he is willing to show us - me. he is willing to show me the way. he will lead me. he will guide me. he will take my hand and gently guide me along life's path, if i will but let him.

i am so grateful for this woman, julie. for the strength and perspective she shared. she made my night so much better.

tonight i will remember my 2014 motto as i allow the words of julie to sink in:

"i am only one idea, one dream, or one person away from my miracle. don't give up. 
the future is bright."

Monday, January 6, 2014

?

i don't know where i am. physically i'm sitting on my bed in my pjs. mentally - i'm far away. drifting. yes, tonight, i'm a drifter.

i feel uninterested and uninteresting. i am so uninterested in life that i do not care one way or the other  whether i live or die. whether my situation is improved or continues. ah, that hurt a little - so maybe i do care a slight, slight bit about things staying the way they are - but living or dying, at this point, i don't really care. i am not engaged in life. in the living of a happy, full, purposeful life. most people would say, 'well then do something about it.' i would. but it all comes down to one word. one lousy word that doesn't encompass my feelings at all.

tired.

i'm not talking the tired after a long day of work that a good night's rest will heal. or the tired of staying up too late or working long days, day after day after day after day. mine is a burdened, sad, disheartened, wearied, tired. i only want to sleep but it does me no good. i still feel like curling up under blankets and drifting away - all day, all night, all day, all night.

is it a form of escape? maybe.

i don't know for sure. 

is it because i'm fighting seizures all day? maybe.

i really don't know.

i only know what i'm feeling.

my head is fuzzy with foggy sleep memories. my limbs feel incapable of doing anything but lying limp by my side. i eat. but i don't want to shower. i don't want to walk/exercise. i don't even feel safe driving my car. and that is what has made me so sad tonight. to feel this way - so closed up inside. i hate it.

i feel uninterested in the life that is around me. in the people, in the places, in the weather, in the beauty, in the ugly, it really doesn't matter - it's all the same to me. gray. faded colors. people talk, i listen, i try to engage, but i leave the exchange so tired, i feel it wasn't worth the investment of energy. what am i saving my energy up for? something big. something grand. those two should have exclamation points. but even that would be too bold to put in a gray post.

i feel uninteresting. my life has been whittled down to nothing. so little. nothing. a little hole in the earth could hold my life. i'm crying because i feel abandoned by god. my brain is so foggy with depression. what to say? what to do? how to phrase it? it all reaches the surface slowly and by the time my thought is there the moment is gone. this brain is different. it's slow, sluggish. it sloshes and swishes through the day swaying back and forth, back and forth. accomplishing so little.

i have waited over 2 months to see this specific neurologist my shrink wants me to see. i have tried not to put all my eggs in this 'neurology basket' but i think it's too late for that. every time i look in the basket there are all my eggs : driving, running errands, independence, working, making money, getting better, getting a diagnosis, getting right meds, getting off some meds, loosing weight, exercise, not being tired, feeling purposeful. 

these are some big eggs, people.

and there they all sit, in the basket, waiting until the 24th of this month, when we can get the ball rolling.

maybe - just maybe - after writing and thinking - all these paragraphs i've finally found it.

i'm tired - of waiting.

Friday, January 3, 2014

2014 : my miracle

"most people are only one idea, one dream, or one person away from their miracle."

s's partner st shared this with her who shared it with me.

it comes from the na handbook.

i think it is very fitting for me in my life right now.

i have decided to tweak it a little and make the following my 2014 motto

:::

"i am only one idea, one dream, or one person away from my miracle. don't give up. 
the future is bright."

every time i start to feel down this is what i will refer to.

i will keep coming back to this over and over throughout the year until i see my miracle unfold.

i don't know how god will do this in my life.

but i know he will.