My daughter Christine spent three years fighting leukemia, from the age of three to age six, but what follows her release from oncology is another battle that will last much longer than her three years with leukemia and may be just as hard both physically and emotionally. And it all starts at six years old, her first day at school.
There is no avoiding the issues in school, baldness being just one and the first one she must face. Her only friend ever, Sarah, died of leukemia in the room next to Christine when both girls were four so she has no social skills at all with healthy children and she also has no friends at all.
For the last three years she has had no exercise other than walking around the oncology ward pushing her IV so recess at school will be tough until she develops some muscle and stamina and other various play skills so she can participate. Her only other contacts for the last three years were with doctors, nurses, social workers and family.
Christine writes about some aspects of this difficult time in her poem INVISIBLE, about a lonely bald-headed child starting school later in life than others. But it’s also about alienation, fear, having no friends and maybe the sudden realization that a new battle is starting that may be as devastating as the leukemia battle.
You might think that Christine would be joyous about being cured, getting out of oncology and the hospital, and at first, she definitely was but that didn’t last for long as she later writes;
“Looking back, all I had ever wanted as a child was to be loved and accepted. There was only one place I had ever felt equal and that was the fourth floor of the hospital where I was treated as a patient with leukemia. That was the one place I never looked at myself in the mirror and felt I didn’t belong. When I was there it was the only time I was not the only bald headed three year old with a hole in my chest. I was one of many little children fighting for life. In that hospital I found all the love and care I could ever ask for.”
A Childhood Cancer Survivor Poem
© 2016 Christine Mulvihill
If I were invisible no one could see
I could go places I wouldn't be allowed to be
I'd see things no one else could
I'd do things no one else would.
This amazing ability seems not to exist
But I can feel it when I clench my fist
When I walk into the room not a soul does stare
It feels as if I'm not even there
Not a single person turns their face
No matter how hard I try to walk with grace.
So this wonderful feeling isn't so wonderful after all
No one will notice when you fall
In a crowded room you're all alone
No one can hear you when you moan.
Yell and Scream all sorts of profanity
Go ahead, declare insanity.
No one even knows you breathe
A loneliness you could never conceive
It feels so bad to know that no one cares
It feel horrible to know that you're not there.
When your tears fall down with grace
No one is there to wipe your face
There's no hand you can hold and know it's going to be alright
There's no one you can talk to when you're scared late at night.
So if this feeling sounds good to you
Take my place, I want you to
But only if you can make it to the end
All the way without a friend
Without a soul by your side
No one in which to confide
Forever condemned to yourself
Forever silent; forever invisible.
Read more of Christine’s poems and stories here.
Wow..that's so powerful..the words ate at my breathing and my soul..I'm sorry you walked on this road where I find myself too.but I'm grateful for your words that describe reality that I can turn around and I hope you have too..
My first thought --
. . . . She may be miserable, but she has a future as a poet.😀
That sudden shift – from “normal kid in the oncology ward” to “freak in the classroom” is going to take time to adjust to.
What she may not understand is that she will adjust, and the feeling of “freak” won't last forever. Her loneliness is terrifying, but I suspect it's temporary.
After she has one friend, she'll probably figure out that “condemned”, “alone”, and “silent” aren't going to last forever, either.
I wish I could send a hug across the Internet – you could both use one.
“Looking back, all I had ever wanted as a child was to be loved and accepted. There was only one place I had ever felt equal and that was the fourth floor of the hospital where I was treated as a patient with leukemia. That was the one place I never looked at myself in the mirror and felt I didn’t belong. When I was there it was the only time I was not the only bald headed three year old with a hole in my chest. I was one of many little children fighting for life. In that hospital I found all the love and care I could ever ask for.” @MPM
Hello @MPM Thank you for sharing this part of your story with us here. When I read what your daughter wrote, as a parent, I think I did feel some semblance of your pain. I cant imagine how hard that would be for you to see your little girl going through all that. I was encouraged to see that she could write about and express what she was going through so well. That alone will open a door or two for her. As a Dad, I can imagine that as long as your daughter feels that she can say anything to you, which it looks like you have accomplished, she will do better in all this and eventually rise up and over this challenge. Kids just dont have the same social boundaries and know hows as we adults, so maybe there will be a chance down the road to educate some of her peers? I am so happy that she is in remission!