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Survivors Guilt and Rare Disease

https://drive.google.com/uc?export=view&id=1lmA6jBicBXzaj5NdwHdllYZCERsznts5


I just couldn’t do it.

I couldn’t go see his parents.


My church was having an activity where we were visiting the parents of a member of our ward .. a friend of mine.. who died not even 5 months prior to due to complications of Lyme Disease.


And just thinking of seeing his parents.  Made my heart stop and my hands shake.


Because I felt Guilty.


And I hated myself for how guilty I felt.


Because he was in a good spot when it came to his health. 

He had a girlfriend who he adored and had fallen in love with.

His life was seemingly coming together.


But after months of a constant health decline.


I was alive,  and he wasn’t.


And because of that..

I Couldn’t even imagine looking his parents in the eyes.


It’s not like, I wanted to die.

That a part of me was jumping up and down , demanding my turn with the reaper.


It’s the exact opposite. 


In my opinion the majority of those who have life threatening diseases.

Spend 90% of our time , 

In a full blown sprint. 

Racing against death.

Sometimes we know the right trials and paths to keep death far in the distance. 


And other times,  death gains pace , as we loose it. 

We try everything we can to avoid it.

But at times we can litterally feel it’s hands wrapping around our throat.

Leaving us pale, and terrified.

Pleading to get out of its grasp .



And for years.  I have more times than I can count felt deaths grasp ,  barley eluding its capture ..


But my friend. Who was finally on an upswing . Was Dead.


And after years of barley escaping deaths grasp.  Months of feeling my health whither and decile . 


I wasn’t.


Emotionally im eternally

Grateful for every day I get


But logically.

Every time a friend of mine.

Sick or Healthy dies.  Especially one who is young. 


It doesn’t make sense.

In some twisted, illogical, but logical way. It doesn’t make any sense.



Because I was prepared.


I have funeral plans scribbled by 18 year old me in a notebook.


I was dying.

I felt my body start to fade .

I had doctors at the age of 20 tell me to “enjoy what life and quality of life I had left. “


And as I felt myself slowly and miserably dying.  I’d pray to God for just “ One more day “ every night  before I went to go to bed.


And somehow.

I was blessed.

And I’ve had 5 extra years of “ one more day”. 


But so many aren’t blessed with that extra day they and their loved ones pray for: 


 I watch friends, family , and aquatences 

Paralyzed with grief as they face the unpredictable and the unmanageable death of a young loved 


And still, see my own family . Reflected in theirs.

Which caused me, to once again come face to face with how easily I could be in that casket next. 


I see Facebook post atleast monthly in different support groups  reporting the deaths . of girls my age , with my exact diagnosis’s 


I’ve witnessed mothers of healthy children who have died. Stare at me with disdain , as I limp or wheeze down the hall 

Their grief stricken eyes practically screaming 


“ How is it that you are extremely ill.. But  still here..   and my child. 

My Beautiful, Healthy Child is Not.?” 


I’ve had the weight.

The immeasurable weight.

Of those who have lost their battles to the diseases I have, friends who have died. Families who are mourning:

Everyone is who didn’t get “one more day “

That I’ve Placed crushingly upon my shoulders.


Making me wonder if I’m in even doing “enough “ with these extra days I’ve been given .


But I have to remember that the days you are given are not something you earn .


Some of the greatest souls heaven has ever known were and are given some of the shortest number of days on this earth. 


The amount of days you are given.

Is a sporadic gift from God .  That has nothing to do with “earning your keep” 


But how you choose to live those days.


That’s completely up to you.


You don’t have to constantly be trying to change the world to “earn your keep” . 


You don’t have to “earn” your right to still be living, 

Even when so many in your situation didn’t get that privilege. 


But you do have to remember that, 

Life is a privilege.  


Some days you are going to curse, and scream, and cry.  


And wonder why life has to be so unfair.


And that’s completely ok.

Those negative emotions are essential to experiencing all to at life has to offer. 


But you have to remember that , 


The air that fills your lungs as you sob .


Is a blessing. 


You have to remember 


The sun shining on a perfect spring day and hitting your face just right.


Is a blessing 



Every holiday 


Hearing the laughter of your loved ones .


The fight you had with your sister 


Your first heartbreak. 


The shake of the (many)  bottles filled with pills that keep you alive 


The collection of wrinkles forming at the corner of your eyes.


Your first grey hair


They are all blessings .


Each ounce of life we get the privilege to live is an emense gift.

A blessing beyond comprehension 


And after personally for me.


After surviving the unimaginable.


Some days  you can get so wrapped up in the guilt of the fact that  “ you are still here “


When so many amazing people aren’t. 


That you loose sight of the phenomenal gift .

That  YOU ARE STILL HERE .


And that gift will never be used to it’s full potential.


If you feel to guilty to use it .
So soak in the sun, binge Netflix, eat the cake, buy the shoes,  cry and scream on your worst days. For real.  Let yourself scream. Cry, and experience every emotion and experience life had to offer to its fullest 
Until we speak to God himself, we will never understand why some live and others die.
But we can live in a way that shows gratitude to the fact, The beautiful, mind blowing fact.
That we were given today. 

#smileon 🐷


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