Sunday, November 30, 2014

I could have been anything

She always marveled at the way I could watch Grey's Anatomy when incredibly ill and not flinch at the surgeries.  Some surgeries, maybe, but not most of them.  One day, with a heating pad on my pelvis and a blanket up to my chin, I looked up at her and said, "I bet I could have been a surgeon.  I kind of like things like that," to which she replied, "I have no doubt you could have been, you could have been anything."  She quickly added that I'm a good therapist, and I love being one, and she loves the kind of therapist I am, but it was a moment, a small moment where we shared that knowing, that unbelievably sorrowful knowing that I could have been anything, I could have been something different, or something not so different at all, but it could have been anything. And my life, most of my life and all of my 20's was made up of pain and fighting to just stay alive.  I know she loves me and who I am, but it was eye opening to see that other people think this..other people see me and know I could have done so many other things.

Sometimes it's enough, this life, especially on days when I can make it to work or even just run an errand.  Sometimes it's enough to dream big dreams, to picture them so intensely they almost feel real.  Laying in bed with pain will never be enough, but the possibility of a future is, especially when my dreams feel the way they feel. I want to do so many things, and help so many people, so much so that sometimes my heart aches at the sheer depth of it, at the amount of things that need to be done and the amount of people that need to be saved.

And not always, but on a day like today, I am reminded that I could have been more, and the emptiness it brings can swallow me whole, into the depths of it's cold, heavy water, into the darkness of its murkiness, into the echo of nothingness. 

But I will get up again.  I will dream again.  Because I am not nothing.  And I can be anything.

Saturday, June 21, 2014


My grandmother passed on Thursday.  I thought some of you would want to know, since those who have followed me for years know how much I love her.

I don't want anyone to be afraid or triggered by reading this, so stop reading here if you might.  Really.  It's okay.

Grandma passed away surrounded by her family.  I know that is sometimes said, but it really happened.  About a week before she passed, we were told she didn't have much time left.  Since we had been told that at least twice before, I admit I didn't think it was the end.  She was a fighter, an incredibly stubborn fighter who defied medical reason and logic.  She was a fighter in every way, and she was for her entire life.  She is stronger than I am, and no matter how sick she became, she was never bitter about life.  She loved life more than anyone I know.  She loved people more than anyone I know.  The nurses would talk to her, tell her about their lives, their problems.  She would kiss their hands and at the end, they were crying at her bedside and kissing her face.

The day before she passed, I sat with her for 3 hours, as did my family and my cousins.  We took turns sitting next to her, we sang to her together, we read poems and prayers and joined the priest for the annointing of the sick.  When he came to the part of the prayer where he said that not only does God show mercy and take souls when they pass, he creates miracles too, and there can be healing.  I hung on to this.  I held her feet and I hung my head and I whispered for God to show me that miracle, though I know it was selfish.  I didn't want her so suffer.  If there was a miracle, I didn't want it to be that she would just live, I wanted it to be that she'd be better, and she'd be able to do more and experience more and see everything she was supposed to see.

Towards the end of the night I sat down next to Grandma and told her I was going to go home to get a drink then I would come back.  The hospice nursing staff made a cart for the family, with drinks and snacks but I wanted to go home to make some ginger tea and bring it back with me.  Grandma was having trouble speaking, but she looked at me and said, "Don't leave, stay, I'll share my ginger ale with you."  This was a heartbreaking statement, and kind of a funny one.  A few family members chuckled because, that's grandma, to offer to share.  But it went deeper than that.  About a year after I became ill grandma went to the hospital for the first of what would become many trips.  I went to see her, feeling awful, and she asked the nurse to bring her a ginger ale.  Grandma then poured it into two separate cups for both of us.  There were many shared ginger ales after that one.  So I didn't leave.  I stayed.  I stayed until she was falling asleep, and as she was fading into sleep, I put my face next to hers and said, "I will see you tomorrow."  She opened her eyes and said to me, "Do you know I love you?  I have always loved you."

And she did.  That is what makes her grandma.  She loved me my whole life.  Not in that whole, I'm your grandma so I love you, but in that, I just love you because I love you.  And I felt the same.  We all did.  Grandma loved me when I was a sick, sensitive little girl who would cry about wanting to save animals and feeling sad for children who were bullied.  She loved me when I became ill as an adult.  She never saw me differently, it wasn't a factor in the way she saw me, it wasn't how she'd describe me.  Through the years we spent a lot of time on the phone, I'd call her and tell her how bad I'd feel about not being able to make it to one family occassion or another.  I swear she's the only one who understood how much I wanted to be there and how much I truly couldn't.  When I had mono, she'd talk to me on the phone while I tried to eat so I'd be distracted and comforted.  I can't believe I will never talk to her again.  I think about that all the time.

The day after our three hour visit, we received a phone call that she was near the end.  We all rushed there, it was lunch time, and my mom, aunts and uncles, and cousins all made it there.  We stood around her bed and kept our hands on her.  We played music she loves and talked about childhood memories.  We sang and prayed.  She was having trouble breathing, the sound of it still echoes in my head.  I had to turn away a few times and go into the hallway to take a breath.  I wasn't sure if I could do it, I wasn't sure if I could stay.  But then I remembered the night before, her asking me not to leave.  And I remember all of the times she held me when I was sick-calmly, without caring what body fluids might land on her.  I knew I needed to stay for her, I didn't want her to be afraid.  If she opened her eyes, I wanted her to see my face, and all of our faces.

Around 1:39 pm on Thursday the 19th of June, Grandma took her last breath.  I felt like I was outside of my body.  I heard sobs all around me, and I felt tears falling down my face, but I was silent, I just pictured her spirit leaving and joining hands with my Grandpa.  The second she passed,  "I'll be seeing you", her favorite song, the one we sang with her the night before, came on the CD player, and my cousin and I looked at each other in disbelief.  We knew it was from her.

A few minutes after she passed, my family stayed, but I left, I felt a strong pull to leave and go to my car.  I drove to grandma's old house, the house she lived in until she went to the senior living apartments.  It was the home my mom grew up in, the home I remember from my chidlhood, the home my cousins and I played in and put our hand prints in the concrete stone in the front yard.  I stopped in front of the house and saw two sparrow's playing in the sand before the walk way.  The first time grandma went into the hospital, I bought two ceramic sparrow birds, and gave one to her, and I kept the other one.  Grandma and Grandpa loved birds, and sparrows held a deep symbolism for Grandma and I.  I watched them play, and I actually started to laugh while tears came down my face.  I wanted to take a picture, but a car came by and they flew away.  I looked down to start the car to drive away, but they flew right back and sat on the fence.  I swear they looked right at me.  I took a picture, and they bounced and played.  They flew away chirping happily and I swear, they were my grandparents, together again.

This has changed a lot.  Grandma passed surrounded by her family, people sobbing and placing their faces to hers.  Nurses were crying in the hallway.  Grandma was ill for years, but it didn't matter in the end.  What mattered is how she treated people, her kind, compassionate heart, her passion for life, her willingness to help and to listen, and her deep love for all people and animals.  I will not remember grandma as someone who was ill, but someone who was alive, so alive, such a light and a fire cracker and a force to be reckoned with.

I have decided, for grandma, and for me, I will no longer classify myself as someone with an autoimmune illness or any other illness.  I am someone who loves people, who feels strong empathy for all people and animals, and who at times can be a real fire cracker.  My fire has been dulled over the years, both from physical illness and sadness about what it has taken from me, but that is over now.  My fire needs to burn, not just for me, but for her.  She brought a light to this world that I need to continue to carry.  And I will.  There is no time to feel bad for myself, or feel afraid, or feel confused or worried.  Yes, there is pain.  There will be physical pain sometimes and fevers and mystery symptoms and symptoms that might scare others, but there will be other things too.  There will be laughter and adventures.  I will be a mom and I will name my daughter Lily and she will be spunky like my grandma.  I will keep going, because no matter what happened to me, grandma knew I would keep going, she knew I would have my dreams, and now, I need to show her I trusted her word.  I need to show her how much I admired her.

At the end of your life, it doesn't matter what your diagnosis is.  It doesn't.  What matters is how you loved.  Just love.  Just love people.  Show them your heart.  Hold hands.  Tell people you love them, and forgive their silly shortcomings.  And when in doubt, ask what my gram, Lillian would do.  The answer would always be, "just love."

Monday, April 21, 2014

It exists

Um.. I don't know if you guys know this, but I'm actually a pretty fun gal.

I mean, I am FUN.

But see, the problem is I am sometimes (note: always) not feeling well, and that puts a bit of a damper on things.  Sometimes I think funny things in my head but am too exhausted from the day to say them out loud.  Oh, Laura, you are just so funny.

Sometimes, I don't even have the capacity to think funny.  But sometimes, I am a trip.  I am a singing along to Taylor Swift, dancing barefoot in the grass (okay, now I just sound like a hippie..) driving in the car with the windows down, laughing when I'm leaving somewhere and it's pouring rain and everyone is caught in it and I'm just- this is so much FUN what is wrong with you people why are you frowning?-- rockin good time.

The problem with chronic illness (remind me to change this term, I don't like it) is that it can steal your joy.  Or, it can try to steal your joy.  And I admit, I have let it sometimes.  I don't mean I actually handed over my joy-no, I like to hold on to that good shit, but sometimes it just sneaks up behind me and takes it.  It's a pesky little beast, that illness.

And once that joy is stolen, and those symptoms come, and they stay..oh they stay, for days, weeks, MONTHS, I start to look like a shadow of the girl I was.  I no longer accept the title of, "therapist, daughter, girlfriend, friend, granddaughter, inventor of fun children's games when young children are sad and I have only 15 minutes to help them feel better before the next client arrives"- but, I hold tight to the title of "sick girl."

Ohhh sick girl.  But um, hello, just because you are one thing, doesn't mean you aren't a million other things.  Remind me to read that line again tomorrow when I'm crying while applying my mascara. (yes, that is as counterintuitive as it sounds. and just as difficult as you can imagine)

What is my point here?  Good question.  My point is, just because you are one thing, it doesn't mean you aren't all of the other things you once were or want to be.  And listen, yes, feeling like you have had the flu for two months (yup) can bring you down and make you start to wonder if you will ever start to feel well again, and it may make you think you are no longer fun and are destined to lay in your bed and talk to your cat for the rest of your days (even though she IS such a good listener), but, that is just not true.  You can feel like you have the flu for two months and still be fun.  In fact, I dare you to be both.  So, okay, you are not hanging out with anyone while in this flare,  and maybe you aren't dancing in a club (um, do people do that anymore?), but you can make some fun, right where you are.

So, put on your favorite pandora station, close your eyes, and picture yourself in the car singing at the top of your lungs, or dancing away in that club ( people still go to clubs?!), or drinking that class of wine with your friends (ah, remember wine?), and smile to yourself.  Let yourself actually feel it.  Wait, wait.  I see you.  I see you feeling sad and remembering good times and feeling afraid you won't feel that happiness again (do I know you, or do I know you?).  Back up.  See that person, that person you are visualizing in your head, deep in those memories?  That person exists.  That person just didn't disappear because something happened or changed.  That person exists.  That person is real.  That person is still inside of you.  Give them a high five, raise your green juice, and tell them, "see you soon" with that little knowing smirk you have.

If it existed once, it exists.  Nothing can take away that truth.  No matter how hard it tries.

The pieces.

Sometimes I swear I can see the pieces of my life that were taken away from me shattered on the ground.  I want to pick them up and fumble them with my fingers, quickly, and place them back together.  I can almost see them, what exists in these pieces, all of the places I did not go, the people I lost along the way, the dreams that have to wait- some left behind all together.

But I do have pictures, frames of what is.  They show me what has persevered despite overwhelming odds.  I will look at them fondly, I will, but I always long for more.  I have always been a person who has longed for more.

This is both a strength and a weakness.  Longing for more pushes me ahead always.  Wanting more for myself both keeps me alive and keeps me awake at night.  The pieces may have shattered, they may have been taken away from me, but I will never stop trying to put them back together.  I will never stop trying to repair what was broken.  I’ll kneel on the ground now, pick up these imagined pieces in my hands and say, “I’m sorry I left you.  But please do not leave me. I am not finished yet.”  I will never, never, never stop trying to put the pieces back together.

Wednesday, February 5, 2014

Things I wish I knew 10 years ago

In my last post I mentioned that I have noticed that everyone has a moment (or week, or month, or year) in their life that they wish they could go back and change.  This moment, as they see it, changed everything for them.  There is a particular moment from my journey that is the hardest to shake- it is the one I refer to often here.  It is the day this all began, the day I collapsed in my college dorm room.  I am trying to see that memory differently, I'm trying to "reframe" it as we say in therapy world.  To help myself (and you!) reframe these defining moments, I'm going to list things I wish I had known back then..things I wish I had told myself the moment my world was collapsing to the ground.

1) The next ten years are going to be the best and worst of your life. While in this moment you are shaking in pain, I promise you will smile again.  I promise you will feel joy.  You will laugh until tears are coming out of your eyes.  You will also feel sorrow.  You will be afraid to wake up in the morning, you will be afraid of how much pain you will be in.  There will be days that you fear the future.  Then, it will pass, and once again you will feel hope.  The good days will become more frequent, and the bad days will become less and less, once you find what works for you.

2) Trust your intuition.  Trust your body.  Trust what you know.  You are going to spend some time fighting with yourself on what is right for you.  For years, doctors will tell you what they think is happening in your body, and you will find it difficult to believe them.  They will suggest treatments that feel so wrong to you it will keep you awake at night.  You will do your own research and find your own path, and sometimes people might question it.  You will have blood tests done that speak another story.  You will eat something you were told you aren't allergic too, and you will feel sick and question if you are crazy.  You are not crazy.  Your body is smarter than a doctor and smarter than a lab test, listen to it.  If something doesn't sound right, it is not because you are afraid, it's because you intuitively know.  Listen to your body, listen to your heart, they will not lead you astray.

3) There are some people who simply will not understand what you are going through.  It is not your job to convince them.  This will go both ways.  There will be people in your life who see you pushing through school and work who will question if you are really ill.  There will also be people who know how ill you are and question why and how you are working.  It doesn't matter what they think.  It doesn't matter what they think you should be doing.  Only you can set your path.  At the end of the day, if you can lay your head on the pillow and say you did your best, then that is your truth, whether you worked a 10 hour shift or had to call out sick.  Trust your truth.  You don't owe anyone an explanation.

4) You are going to meet the best friends you have ever had.  For most of your life- no, all of your life, you have felt like even your friends didn't understand you or know you.  Even when you were 100% healthy and could do everything else your peers could do, you always felt different, and you never felt fully accepted or understood.  It's because you are different.  One day, "different" will be a good thing.  "Different" will help you defeat the odds.  Different will help you help others.  They will see that you do care, that you empathize with them, and that you know what it is to suffer.  Being different, being more sensitive than others, and feeling more than people usually feel is the thing that will save you.  It is the thing that will bring you where you are meant to be.  You will meet the best friend you always wished for.  You will connect with people in ways you never imagined.  You will feel their pain and you will root for them and you will be able to tell yourself that it was all worth it, just for that moment when you know someone believes you truly understand them.

5) No one can tell you what your fate is.  No doctor, no lab result, not the name of your disease or how you feel on this given day can define your fate.  You define your fate.  You do.  People will try to limit you.  I'm going to say it.  They will.  And it will usually be because they care and diagnoses bring about uncertainty and fear.  Do not let other peoples fears cloud your reality.  Do not let their "stuff" come into your energy field and skew your vision.  You can have everything you want.  You will have everything you want.  You might have to work harder than you thought you would, and it might take longer than you like, and you might have setbacks so intense that you will wonder if you are crazy for trying, but you will get there.  Keep trying.  Keep going.  You will never know unless you try.  And if you try, and you cannot complete that goal, you will know you did your best.  All that matters is your truth- your truth, and no one else's.

You are the hero of your story.

Never, never, never give up.