I wanted to share something very personal that I wrote two years ago. When I was in the heart of my treatments and at my worst, there weren’t a lot of people that I could relate to. A lot of people post online about their symptoms, their medications, doctors, but not what it is like day to day. That is why I am opening up and sharing this with you today!
Is someone with you, monitoring your every move? Do you feel like the walls are closing in on you and you can’t escape? Is that what it’s like to have a clingy husband, wife, roommate, ex you can’t get rid of, or annoying parents? As cringe worthy and totally relate-able as all of that is, my lack of personal space is on a whole different level than just sharing a bathroom with your younger brother and arguing over the sink before school.
I’m constantly being evaluated, poked and prodded with blood pressure machines, thermometers, blood tests, IV bags, spinal taps, muscle tests, skin biopsies, MRIs, CT scans, every test you can imagine, checked by countless doctors across the country. I’ve been in so many hospitals being monitored multiple times a day that it all just piles up emotionally.
Someone is there when I’m showering, needing help on and off of the toilet, getting in and out of bed, and getting in and out of the car. It’s as if I am drowning in my own life, and I can’t get out. No one is coming to save me, no matter how loud I scream.
I hate being touched now. I feel like I haven’t had a minute to myself in 3 years (now 4). Even a hug, after all of these tests, has made me just want to be in my own bubble. It is a terrible feeling, to get to this point. I just wish I wasn’t in my shoes, and if you know me, you know that I do not mean this literally. I love a good shoe! You know what I mean; I am human! I hoped every morning it was just a bad dream.
However, I’ve said it before, and I’ll say it again: don’t pity me.
I was given a bad deck, but I know it is not permanent. I don’t have a terminal illness. I know that’s not a luxury everyone has, but that doesn’t mean that I haven’t struggled. This has taken the innocence out of me.
I can’t wait for college and just to be there, making new friends, and perhaps, spending time with old friends as well. I just want to live in the moment, have fun, and make new memories, the total opposite of how I’m living now.
This is NOT a reflection on the people around me, because I’m eternally grateful for their love and support. I could never get through this without them.
How do you get through it?
You have no choice. You get through it. I know it’s hard when the rest of the world goes on, and your life is at a standstill. Trust me I KNOW! Sometimes you don’t know how, but you power through. You are courageous and strong and can get through anything. Your time will come! I have hope that, as my grandma always says, “May tomorrow just be better than today, and I’ll be happy!”
Comment below! Lets connect!
© Samantha Sloves 2019
So well said!! You are amazing. The future looks so bright for you. It seems to me that you are getting through everything with style and grace.
I just cried reading this! You’re so strong, intelligent and beautiful. I’ve witnessed you overcome so much while in the hospital you have an amazing spirit and tons of drive. I’m blessed to have worked with such an awesome patient. You’re an unstoppable force now stronger then ever.