Wednesday, May 25, 2016 0 Comments
When you are sick you want to be at home. You want to be surrounded by the things and people who are familiar to you.

Getting sick with Guillain Barré Syndrome came out of left field... It's something that I never imagined. Like most people I'm naive... I wanted to think that bad things don't happen to good people. That my family had already had their share of bad health experiences and that I should just be exempt. 

Unfortunately I was wrong. Becoming quickly paralyzed and on life support was a blow to not only me & my husband. But also my close knit family, friends and community... It's just something so odd but devastating.

From the first night in the hospital my grandma sent out the "bat signal" and my Aunt Leann came and hung out with us while the doctors started their lists of tests. The next morning my dad came and also a dozen or so cousins, aunts, uncles, grandparents and a few of my friends. 

Fast forward a few days- I was on a ventilator with it breathing mostly for me. My eyes were closed and fixed for a month and all that I could move were my thumbs. Laying there completely exposed, drooling and locked in my own body unable to easily communicate. They could ask me yes or no questions and I was able to answer with my thumbs- right for yes and left for no.

I remember hearing one of my loved ones asking a doctor how long it was going to take to get back to my normal self. The doctor said he couldn't answer that since every GBS case is so different from the next. But be prepared for me to be in hospitals until March... It was December. I thought the doctor was crazy... No one is in a hospital for 3 months.

Your mind does odd things to survive when you can't communicate... It was so hard not to talk in general but excrusatiing when it's something so big and terrifying and you stuck in your own mind and you can't talk it over with someone.

In not my finest moment I recal wishing I had cancer instead... And instantly feeling guilty. It wasn't that cancer was any less terrifying and devistating...But cancer was something I knew. Something my family has ralleyed against too many times. Something you can be aggressive and fight.  While with Guillain Barré all you can really do is wait around for the nerves to regrow. It's all about patience... Which I had very little of. I wanted to fight... But instead I waited in the darkness with such overwhelming pain that I didn't know where it was coming from... And know one knew...

Just to be clear, I'm in no way down playing cancer. I have had handfuls of family members and a few friends who have had to fight to live. I respect them all tremendously.

At that moment I so badly wanted to be home. I felt guilty for my family and friends being ran rugged to come see me. I'm told that every night when I was at the local hospital for 3 weeks at least 25 of my loved ones were there in the waiting room. My family bonded with more of my friends. They took turns bringing dinner and to come and hold my hand. I'm so grateful for them. But I have to admit, I never felt so alone. Someone was always with me and holding my hand. Telling me the latest gossip (Corning was pretty lame at that time), spilling there sarrows and triumphs. But most importantly, they were suctioning the never ending drool from my mouth & making sure the fan was on me lol.

Through out my stay I was constantly getting meds for my never ending pain (more on that another time) ... Once I returned home 131 days after being in hospital care I rarely took anything for pain. Yes I had some pain but I was happy... I was in my home with my husband and animals. Around all things familiar and that was the best possible medicine.

The first few days home- watching Frozen with my niece.

I'm nearly 18 months along with Guillain Barré. Every day comes with its struggles and constant pain... Even if I deny it. But I rather this life right here than one day at my worst. These people and so many more make this life worth living.