See me, not my disability

By Ainaa, SMA type 3, Malaysia, February 22, 2021

Ainaa

Just before I turned 2 ½ years old, at an age when most children are learning to walk, I was diagnosed with a medical condition called spinal muscular atrophy (SMA). At the time of my diagnosis, access to the internet and information on this disease wasn’t readily available. Nothing much to know about SMA.

Given its prognosis, my parents were told there was nothing- no cure and no treatment. All they could do was simply love their baby girl. All they could simply do was hope and pray for a better tomorrow.

The reality of SMA is that it’s a progressive and degenerative disease that causes muscle weakness over time. Known as a rare, genetic disorder, spinal muscular atrophy (SMA) is a progressive neuromuscular disease that affects a person’s motor neurons. SMA weakens the muscles involved with walking, breathing, swallowing, and anything that requires physical movement. 

From my 25 years of living, there are a lot of stories to be told. Tale of countless hospital stays and fighting everyday battles somehow become part of life to someone living with SMA. Yet they also tell a story of a girl who was never willing to give up.

19 August 2013 was a date I will never forget where I lost my dear sister. It has been seven years since Adik left us. It was a sad episode in my life. Adik was a patient of SMA too. Both of us struggle in our life and we are the angels for our parents. I lost my only sibling and my best friend. I missed her very much. But I can feel that Adik is here with me today. I witness my parents grieving, especially my mom. She cried every day for quite some time. She still cries now. I pray God will continue to always bless me with health and wellness so that I can make my parents happy. I don’t want them to worry about me and that is why I have to keep fighting for my health.

The transition from high school to college was somewhat exciting but it can be terrifying at the same time. For the first time in my life, I was entering a community where no one knew who I was. My friends had gone off to different colleges, and I knew I was going to have to start everything again.

Surviving college was no easy feat. But despite the obstacles I faced, my four- years at First City University College (formerly known as KBU International College) were some of the best years of my life. 

I ended up making friends. Many of them. Most importantly, though, I thrived. I met extraordinary lecturers, studied hard, and did everything I could to receive the best education possible. From day one, I knew I was extremely blessed to have an opportunity like this because many people in my situation unfortunately do not.

I built relationships with my lecturers. I remembered my mom explained to lecturers about my condition before I entered college. Communicating with my lecturers on a regular basis helped them better understand my needs. My lecturers were willing to make any accommodations, if I needed an extra time on assignment, to understand if I needed to skip class to attend my physiotherapy and occupational session and hospital appointment.

I asked friends for help. I found people were more than willing to help if I just articulated what I needed. At college where I constantly needed help with things like opening doors, helping me to go toilet and picking up stuff, this skill became an essential part of my survival. It’s difficult and pretty embarrassing at first, but I have to do it if I want to survive college life.

This past year of college was a rollercoaster ride of many ups and downs; yet, it’s been the best year I’ve ever had. I started off my second semester of degree with hospital admission. That was my first admission after a long time. I feel tired, and I knew the only solution was to take my classes one day at a time, while reminding myself that giving up wasn’t an option. I am glad the hospital stays were not that long. I managed to finish out the semester, feeling stronger, healthier and ready to take on my final semester of college.

I could not think of a better way to end my degree. I had fun, I got to know more incredible people, I won a last minute competition that I entered, met amazing friends and lecturers and so much more. . The college management made some amenities for me so it was much easier for me to move around. I’ll never forget all of the opportunities that God has given me over the years; the memories made will forever hold a special place in my heart.

Having SMA or another physical disability while trying to pursue a college life can seem impossible at times. . The truth is, it’s hard, but it’s certainly possible. 

Yet, through all of this uncertainty, there’s something I need to keep reminding myself. SMA is with me everyday. There is not one day that I get to take a break and forget about its existence. It takes intense focus and stamina to fight an everyday battle, to manage the unmanageable and stay one step ahead of the unpredictable. Now, here I am with a degree holder that proves all of the hard work I’ve put in over the years. I’m thankful to this hard working figure that has worked hard to help me identify and shine my talents. They are the one who believes I can fly higher like everyone else, crying together in a moment of sorrow, entertaining a wide range of emotional mobility, struggling to make sure I get the opportunity like everyone else until I realize my dream as it is today. Whom I mean are my parents. This success is for you. Thank you mama and papa.

However, I will never be that girl who won’t conquer  anything because of a medical diagnosis. I have pushed my limits and fought hard to create a life that I find worth living. I have graduated college and created my own brand Conteng by Ainaa. I have discovered a passion for creating and making craft. I have found strength in my struggle to understand that this life is only ever going to be as good as I make it. I am now doing the job that I love.

SMA may weaken my muscles, but it can never take away my spirit. 

I am still chasing my dreams and I still have a long way to go to meet my goals. I will always continue to strive for the best, although I have no idea what my future holds. As an emerging artist, all I need is to keep doing what am I doing and keep creating magic. 

 

*Find others with SMA on RareConnect, the online platform for people affected by rare diseases

 

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