I met this week’s warrior through a Cerebral Palsy (CP) Facebook group. She is a young woman who recently started her own blog and was looking to connect with others. We started chatting and decided to collaborate! One of her goals is to help with CP awareness and inform others about the issues those with CP face. I am very excited for you to learn more about her. Below is her story in her own words.

Meet Maheen

Hi! My name is Maheen Naseem. I am a 20-year-old Pakistani. I was diagnosed with cerebral palsy when I was 1 1/2 years old (I was still using my baby walker).  I would like to give a big shout-out to Dr. Zulfiqar Bhutta who worked at Aga Khan University Hospital.  He was the one who diagnosed me with mild spastic diplegia cerebral palsy (mainly affecting my legs) while other doctors were confused and weren’t giving my parents a proper diagnosis as well as zero hope. 

As fate would have it around the time I was diagnosed, my father applied to Masters of Business Administration (MBA) programs around the world. He got accepted into various universities in the USA, UK, etc. but Dr. Zulfiqar Bhutta advised my parents that if there was even the slightest chance of us going abroad, to take the chance as it would be better for my future. 

My father accepted an offer from New York University. As it turns out, during that time there was a policy which stated that current children of students studying in the US would get complete free health care! Treatment finances were now not an issue for us. The only stress my father had was to do well in school as my treatment was depending on his university performance.

Moving to America wasn’t a huge problem for me and my older brother because we were just kids. I was 1 1/2 years old while he was around 3-4 years old.  However, I can’t say the same for my parents. They were born and raised in Pakistan. Moving to a whole other country where you don’t know anyone was definitely not a walk in the park.  This transition was especially hard for my mother. My father on the other hand was able to adjust by focusing on school. 

In the beginning, various doctors did not give my parents much hope and didn’t help at all. One doctor even bluntly said, “Your daughter will never be able to walk independently.” But once again, fate was on our side! The possibility of Selective Dorsal Rhizotomy (SDR) came into the conversation. My parents consulted various doctors and became well aware of the risks involved. It was a gamble that I’m so glad they took! 

I was four years old when I had a SDR surgery at NYU Langone Orthopedic Hospital, formally known as Hospital for Joint Diseases. After the surgery, I had to go a step back and use a wheelchair during the rehabilitation period. After that, it was all uphill! After my rehabilitation period, I started using a walker again with Ankle Foot Orthotics (AFOs). Around second grade I used the walker less and started using crutches. 

At 8 years old I moved back to Pakistan. A move I was not at all happy about but that is a story for another time. The only good thing about this was that I stopped using crutches.  Around the age of 13, I had another surgery that loosened my hamstrings. After that surgery, I stopped using AFOS as well. I was now walking completely independently. Proving someone wrong is so much fun!  I have reached a point where I am finally ready to live on my own. I have received admission to Monash University Malaysia, online classes have started and once the Covid situation calms down, I will finally be leaving the nest! 

For parents who have kids with cerebral palsy, I would like to tell you that you have every right to be protective but the reality is, you can not protect us from the world. You need to let us experience life on our own terms. I’m not saying let your kid run wild without consequence, that’s just bad parenting in my opinion, but day by day, small amounts of freedom that you normally wouldn’t give your child can go a long way. The more freedom you give, the more we will learn to adapt on our own, which everyone has to do eventually. This advice is especially for parents who have teens, it time to let loose a little. 

Time and time again people have asked me to share my story with the world as it will give hope to kids as well as parents. That is why I started my own blog:  Enough Of Dis Blog. On this, I discuss my own opinion and experiences with cerebral palsy related issues.  I also write featured posts about other people’s journeys with cerebral palsy.  To be up to date with upcoming posts follow my Instagram account @enough_ofdis.

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Thank you so much Maheen for sharing your story and being part of our Warrior Wednesday! We look forward to reading your blog and seeing what you do next!