One in a million

Ashley Jade Komanetsky's story, as told by Madeline Kemper

One+in+a+million

I am. I am that girl. I am that one in a million. I am diagnosed with Aplastic Anemia.  I am not cured. I do not know what will happen next.

My body does not produce enough red blood cells, white blood cells and platelets.  This is because the bone marrow’s stem cells in my body are damaged.  Aplastic Anemia is also called bone marrow failure.  Doctors are unsure of the cause of my disease; actually they are unsure of a lot.  It could be genetic, it could be environmentally induced, it could be something that I have had since I was a baby.  It could get better, it could get worse.  I could be better, I could be worse, but not much worse…

I sometimes wish that I could have a “copy and paste” button for everyone who asks what my condition is.  I try to make it sound bad, because it is bad and when I say I have Aplastic Anemia everyone automatically thinks, “I know what anemia is. That’s not bad; get on some medications and you’ll be fine.”  But what they don’t know is, I can die from it.

In the beginning, it was just a bruise. Then a welt spread down my leg.  I went to the emergency room, they did a blood test, and next thing I knew, I was getting three to four blood and platelet transfusions a week, all-day processes that took six hours, just to come back one or two days later and do it all over again.  In the beginning, I had zero to 10 percent bone marrow, when I should normally have 90 percent.  At one point, my immune system was completely gone.  I was living off of antibiotics, with only a 50/50 chance of survival.

I was very angry.  It’s hard to understand why I have been chosen for this.  I will never be the same person. I may one day be cured, but I will never stop feeling like a sick person.  I no longer consider myself normal.

Right now, my blood levels are at a constant low, and I am always on the verge of having to go back into the hospital.  I am always cautious.  Stay out of the sun, no exercise, don’t stand for too long.  I have been told that my platelets and red blood cells are not forming correctly.  I am looking forward to a bone marrow transplant; at this point it is one of my only options for getting any better.

I have had to miss a lot of school because of my condition. My friends, all but one, left me.  I used to be popular, I used to have a lot of friends, people knew me. Then one by one, they stopped talking to me. I guess it was just too hard.  I thought, I got in it my head, that these were my good friends.  That they would be there for me in the good and bad times. Not that it matters now; I have changed and so have they. I know now who to lean on, but what hurts the most is sitting at lunch with one other person I barely know.

Last Thursday, I was admitted into the ER with bad cramps.  They did a CAT scan and found a lot of stones in my body. Friday, I was put through a HIDA scan and I had to lay still for three hours. I was already experiencing stomach pains, and then doctors injected enzymes that were the equivalent of a greasy hamburger to see how my gall bladder would react.  It was so painful.  I was crying so hard. I begged and screamed for them to stop. I threw up on the side of the table, but I still was not allowed to move.  The one nurse was crying. She ended the scan three minutes early after she turned to my mom and said, “I just can’t do this anymore.”

I knew they had to do it, though; you can’t cut into me unless it is completely necessary, because every time I go into surgery I could bleed out on the table.

As I was regaining consciousness, my first thought was to post the bandages on my stomach to my followers on social media. I like my scars.  They tell my story and I want to tell people what I am going through. Instagram and Facebook have been my release, my place to go when the real world is too much.  I have found so much positivity in social media and being able to share my story.  I am able to fade from my typical shyness into a much more open and expressive person. Prayers and well wishes are constantly posted to my wall, and I know that there are those people watching out for me.  But more than that, it reminds me that I am not completely alone in a world that at times can be so lonesome.

I have been able to raise awareness with wristbands, T-shirts and support groups through the Internet which have also allowed me to connect with survivors of my disease.  I was documented two weeks ago by my hero, who has been  Aplastic Anemia free for two years.  My mission is just to spread awareness, to teach others about this disease.  I hope through this all I can help just one person in what they are experiencing, give them someone or something to relate to.  I have come so far and I am stronger than I have ever been.

Strong for the moment. I am currently waiting for MDS results that could be the difference between coming back to school next week or next year.  It could mean getting better or getting worse.  Waking up every morning not knowing what my condition will be. I could be cured in a week. I could be told I only have a few months to live. I don’t freak out over small things anymore. I’m thankful for more things. I am that one in a million.  I am going to keep fighting.

Gallery: Ashley Documents Her Journey

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