Zahir is 13 years old.  He loves to dance and listen to music.  He has that in common with his older sister Q-Aani, who he describes as his shield and protector.  At least she was until about a year ago when she was diagnosed with AML (Acute Myeloid Leukemia.)  After her diagnosis, Q-Aani went into the hospital for treatment and has been inpatient ever since.  Zahir has spent months trying to find ways to stay connected to, and communicate with, his sister. Q-Aani recently underwent a bone marrow transplant and Zahir bravely stepped up to be her donor.  In the interview below he speaks about these experiences and courageously shares his thoughts and feelings to help other siblings who might be struggling with some of the same concerns and challenges.
And now, Introducing, Zahir!
(Interviewed by Friends of Karen Sibling Specialist, Melinda Ferraraccio, MA, LCAT-P)
Tell us about you…

Zahir: I think it’s cool to learn new things and discover things your body can do.  That’s why I like to dance.  I have mostly picked moves up from watching videos of great dancers, especially these guys Teo and Ayo.  They are brothers and they make music and dance.  My sister taught me dove step and slow motion.  She doesn’t dance much now, but we used to always dance together.

What is your favorite thing about your sibling?

Zahir: One thing I know is that it doesn’t matter what situation we are going through she will always make time to be there for me to make sure I’m protected and taken care of.  We argue and play fight, but it’s really made up arguments to make each other laugh.  This year the bond we have feels like it’s been broken because we don’t get to see each other.  It’s harder for us both to understand what’s going on with the other.  I wish I could have my strength back (Q-Aani) I feel weak now.  I barely go out like I used too.  I mostly just stay inside.

Is it hard to go out now and hang out with friends because of Q-Aani’s illness?

Zahir: I only talk to certain people. It has definitely effected some of my friendships.  No one really knows what’s going on inside of me and my attitude has changed.  I take things to heart more now and I can’t laugh with them (my friends) anymore.  There’s only really one person I really talk to.  I can trust him because he’s had some tough things happen to him too.  So he gets it and he’s easy to talk to.

Can you tell me about Q-Aani’s illness?

Zahir: Q-Aani was diagnosed with an aggressive form of leukemia.  It is a cancer of the blood.  I don’t understand how this happened, but she passed out one day and went to the hospital.  When I found out, I didn’t take it well. I pulled the covers over my face and couldn’t stop crying.  I had to go to school after that and told a friend and I wrote a note to my teacher and he let me just put my head down and I cried again. It was a really hard day.

Wow. It must have been really tough for you to get through that day at school.  It sounds like you found ways and people you trusted to help you.  You mentioned earlier that your attitude has changed.  Can you explain that a little more?

Zahir: I just see things differently.  I had to cut some people out because they just don’t get it, and I got closer to others that I trusted. I stopped caring about things that used to be really important to me.  I couldn’t focus on my work.  I didn’t want to listen to anyone.  I started talking back to teachers.  I have friends, though, that help keep me from bursting out at people.  I take deep breaths and blast music to cancel out everything else.  It ain’t worth getting into it with people. Sometimes I recite a song so I can just focus on the song and zone out.

You shared a song and lyric with me that really speaks to you.  Do you mind sharing it with the readers?

Zahir: The song is by Angel Haze.  It’s called Battle Cry.  “It seems like yesterday that I was nothin’ then all of a sudden I’m a volcanic eruption… Yea.  That’s how I feel a lot of the time.  I have all these feelings inside and I don’t know what to do with them anymore.  It’s so hard to talk about them and they just stay there inside.

I invited Zahir to use a visual journal to get some of his feelings out.  It can be hard to talk about things, but writing or making art can help to relieve some of the pressure the feelings are causing inside.

Zahir:  I wrote a letter to Q-Aani.  It was easier to write it than to say these words to her.  I think I will give it to her to read. The letter speaks about how much I miss her being home.  I wish I could just walk in one day and she would be on the couch.  I would scream and cry and run to hug her. She’s going to miss so much.  My prom and 8th grade graduation.

It must be really hard to think about her missing those important moments in your life.  I wonder if there are ways to include her in them even though she won’t be able to be there in person.

Zahir: We both have the same phone and talk more now.  We can facetime and messenger.  I am hoping we can have her on facetime depending on how she is feeling.

Maybe you can also choose to wear something on those special days that make you think about Q-Aani and make it feel like a piece of her is with you in person. That object will then be in all the pictures taken that day and can perhaps represent Q-Aani.  It might be helpful to speak with Q-Aani and see if she has any ideas about how she could be a part of things.

Zahir: It has really helped to write in this book. It feels better to get some of these feelings out without having to talk about it. I’m going to take this book with me places to have it when I need it.

Is there anything you would like Q-Aani to know?

Zahir: If she reads this I want her to know that no matter what happens to her (like she is having trouble with her hearing right now) I will always be there for her.  Even though she was my shield, it’s my turn now to be her shield.

Do you have any advice for other siblings?

Zahir: Even though you don’t see her (your sibling) they will still know you are there for them.  It’s going to be one day for you to change positions so you can be her/his shield and step up to protect them. It’s your turn to take the role of responsibility.  By doing that it shows you care no matter what you feel.  It lets your sibling know they come first.  Go home and close your door, bust out crying there if you need too.  That way He/She will still know you are there even if they think you are not.

And now you can also use your book to dump some of the tough feelings you are dealing with.  Maybe other siblings could try that as well!

Thank you for your bravery Zahir.  Thank you for being so honest and for sharing your thoughts, concerns and the ways you are dealing with Q-Aani’s illness and hospitalization. Many other siblings will be able to read this and will hopefully learn that they are not alone and have some of the same feelings and concerns as Zahir.  Siblings might even find it helpful to create their own journal.  Writing and making art in the journal might give you a place to let your feelings “erupt” and may help to ease the burden of carrying so much inside. Please check back next month to meet our next Friends of Karen Sibling of the Month.