Originally I got this idea to write this, after reading something else, then it turned into a project for a friend, which made her so happy, and then I decided to send it to the Mighty, and then knowing I probably wouldn't hear anything for a little while, I got impatient, and decided to publish it on my blog. So enjoy, and to the girl this was written for: I will always be here..<3 font="">
Dear You,
I
know your feelings. You feel as though you’ve stepped into a world of unknowns,
and unfinished sentences. You may feel all alone but know this: You are thought
of often, by people you thought didn’t even notice you. You will be thought of
when you go for your first test, a CT scan. You will be thought of when your
heart is racing as you watch the film go round and round. You will be thought
of when your head is in your hands, wondering how did I end up here? There are
no words that I can say that will make you feel better at this point, nothing I
can do that will make you feel at ease about your diagnosis. All you can see
are stats and percentages that make it look like this will be an uphill battle.
And it will be. But I’m here to tell you that you can win this battle, and have
fun doing it.
Your
fears were once my fears, and my accomplishments can soon be yours. You don’t
know it now, nor will you know it tomorrow, but you will feel whole again. That
half a person you see in the mirror will find her other half. At this point living until tomorrow becomes
your only goal each and every day. Like your doctor says, you have to keep
yourself alive and healthy enough until modern medicine catches up to you. The
guilt that you feel is going to swallow you up, will gradually become lighter,
as you accomplish things doctors never thought you would, and as you gain
understanding about how the preceding events happened and why. Your numb walk
through life, I’ve walked your path. I’ve felt your numbness, that numbness
that has made you so cold, because you don’t want to be hurt again, don’t want
your life ripped apart again by one more diagnosis, I can still feel it at
times. Hearing the words, you have X illness, and medicine hasn’t caught up to
you yet, can be earth shattering. But you will learn to make lemonade out of
lemons. You must. But know this: your world, no matter how small it feels like
it’s just gotten, how blurry your future seems even though before it was in
perfect focus: Is beautiful.
You
will know your world is beautiful when your doctor is amazed by your recovery from
a 30 days hospitalization that only took two days at home.
You
will know your world is beautiful when you see the smiles on kids’ faces in the
hospital when you do a toy drive for them for Christmas.
Your
world will get infinitely bigger when you realize the power of forgiveness, and
you will learn the true meaning of humility, when you have to forgive the man
who almost took your life, but at the same time saved it.
I know you’re scared.
Every statistic you read makes you more afraid of the unknown than you ever
thought possible. 50% of shunts don’t last more than 2 years. Sometimes in
order to face the fear you have to “go there”. You have to let yourself be
afraid to realize that you have the strength to make it through. And sometimes
knowing you have the strength to get through whatever it is; is all you need.
You don’t need to go through the experience, but just knowing you will be able
to get through it, should it ever happen, can allow you to feel like you at
least have a little bit of control over your life, even when everything seems
just one tiptoe too far. I know the burden of carrying a chronic illness
sometimes feels unbearable. And the uncertainties make you feel like there’s no
end to all of this effort you’re seemingly putting forth.
I
know that at your dr’s appointment where you got this heartbreaking diagnosis,
suddenly that small hospital room feels even smaller, suddenly the temperature
in that room went up 20 degrees. You feel like the entire world can hear your
heartbeat, when in reality it’s just you. You feel like as you walk through
this illness, you’re always going to feel this alone, always going to feel like
no one gets it except you. You’ve heard the words snowflake illness so many
times in that one appointment, that you are unsure of what the words even mean
at this point. But I’m here to tell you it will get better.
Words
can’t help you right now. No number of hugs can help you right now. And God
knows more facts definitely will NOT help. But remember this, as the clouds
start to scatter and you can see the sun peeking through, Life doesn’t end with
diagnosis. A new life is just beginning, and you will learn to live with your
new life, you will learn how to take the broken pieces of your old life and
meld them into your new life, and while for now you’re making them fit together
with tons of tape and Band-Aids, soon you won’t need them. Soon your life will
heal, and you will have a scar, but that scar will represent what tried to beat
you but failed. This new life is hard, insanely emotional, lots of ups and
downs, but nevertheless beautiful, unique, emotional, and definitely a crazy
life. You only get one. So enjoy it.
Love,
Experience
