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Why I Am a "Reluctant Warrior"

Updated: Dec 2, 2019

When people say they are "survivors" and "warriors" of a particular disease I always said "UGH!...yeah that's me!" But I never wanted this. My dream was to be an artist, raise my children with my husband and enjoy the outdoors. ALWAYS being busy or involved with something. Painting the house, furniture, some kind of DIY. I loved a challenge. I went out without thinking "this place is too noisy or this band is too loud." The louder the music the better! Reading books- if they were good I'd read it in two or three days.

Now? Everyday I get up and am thankful I am able to get dressed, shower, go to a family event or out with friends. I am proud of myself. But that wears thin quite often. I remind myself that before when I was really sick I would think "I can't even get dressed, I can't do simple things like climb stairs or wash my hair. Some days I had to grab furniture or hug the walls to walk. I couldn't go to the grocery store because it was too much stimulation and it could make me start crying or feel nausea from my eyes shaking so badly.

When I say "reluctant" it is because that is how I feel. I am not proud of it but inevitably I fight every day to do little things. I fought to get where I am. I even tried at one time to give up completely. But I didn't. To me, doing little things are precious. When I was able to see my daughters chorus concert and not feel like I was going to cry from over stimulation- I won. When I could go with my husband and three kids to Dave and Busters with flashing lights and the loudest sounds from giant video games ever put on God's earth- I won. When I went out to a German beer garden to hear an amazing band with friends and didn't feel sick during or after (although I napped alot the next day) I still WON.

I still get envious of people who can go out, be themselves, go running, go to work. But I try to remind myself that everyone has some kind of cross to bear. No one lives every day in bliss. They are battling something in their lives of their own in one way or another.

So I try to remember, every time I can do something that was or is hard for me I fight for it. I go like a good soldier to my thousand doctor appointments and infusion treatments which even though I feel blessed to have them- I'm not happy about it. But that is what a warrior does isn't it? I am at war with my disease and every day I try not to let it win. That is how I am a warrior.

Testing at the hospital
Sally Carty is the Vice President of HESA

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