3 minute read
als: what it feels like
adam welburn-ross was just 43 when he received a devastating diagnosis: he had als.
as told to: 'i don't have any more tears to cry'
selvajothy manotheepan was a dancer until als robbed her of the ability to move. but despite facing monumental losses, she wants others to know that joy is possible.
selvajothy manotheepan describes her family as her saviours. supplied
selvajothy manotheepan is a scarborough, ont.-based woman who has been living with als for nearly a decade. having gone from being a dancer to being unable to walk, it’s a disease that has had a sudden and monumental impact on her and her family. but thanks to a big and loving support system, she finds joy in her day to day, and continues to be a dedicated mother, wife, and daughter. this is her story.
this interview has been edited for length and clarity.
what was your life like before als?
i came to canada from sri lanka in november 2013 with many bright hopes. i was a dance teacher and beautician, and i continued my career in an academy after i immigrated.
what were the clues that something was wrong?
in 2014, a year after my move, i started to notice a few big changes. i started to lose weight and suddenly lost strength in my legs. i fell a few times and couldn’t get up without help. i would get tired of talking and my speech was slurred. i often lost balance while walking.
soon, a friend of mine suggested i go to my family doctor and get checked out. i took a blood test, ultrasound, mri, ct scan, the works. by 2016, i was officially diagnosed with als.
in what ways has als changed your life?
within six months of my diagnosis, it started to spread from my legs to my throat, and i started using a walker. today, i’m using a wheelchair, and have been for about five years. i can’t speak either, it’s hard to breathe. my fingers are no longer straight, and my knees are bent. in the winter, my legs and hands get so cold.
selvajothy manotheepan was a dance teacher before her als diagnosis. supplied
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in all honesty, i’m suffering a lot, my life has turned upside down. i used to be a dance teacher, my entire life was about movement. now, i can only dream about my old lifestyle, which is something i’m tired of doing. my dancing legs have gone to sleep. i don’t have any more tears left to cry.
what gets you through every day?
my family has been my saviour. with their help, after a while, i started to figure out how to live with this disease. my mom, husband, kids, friends, and neighbours have all been so helpful to me. one of my good friends, vijaya ramesh, who herself is living with parkinson’s disease, even helped me share my story with you.
what do you want people to know about als?
i want people to know that, if you are diagnosed with als, don’t run away. know that you can fight. go outside as much as you can, listen to the music that gives you joy.
more about selvajothy. joanna oachis, selvajothy’s community lead at the als society of canada, has been supporting her throughout her experience. here’s what she had to say about her incredible strength:
i am really impressed by the positivity selvajothy shows in the face of this terrible diagnosis and in her efforts to help raise awareness — she always says yes when it comes to being an advocate.
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selvajothy always has a smile on her face when i visit her and she is really an inspiration. she is also a wonderful mom and spouse. she enjoys her family and friends and is trying to make the best of every difficult situation knowing that her life is limited. through everything, she has remained a very positive person.
for more information about als and to connect with others, click here to contact als canada.
sadaf ahsan is a toronto-based writer.
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