Spinal muscular atrophy or SMA is a rare neuromuscular disorder that often leads to early death. The disorder is caused by a genetic defect. However, there are people who are suffering from the disease but try to live a normal life.
Samira Alipour was a young girl, who struggled with one of the most serious diseases of the current age (SMA) but finally passed away in November 2019.
Despite all the hardships during her life, she painted, made pottery and wrote. Besides, her book “The Resonance of Inception,” is in the second printing.
SMA is a progressive disease characterised by loss of lower motor neurons and progressive muscle wasting.
Samira was eight months old when her family found out she was suffering from the disease. She was 29 when she died.
We refer to Samira’s condition as a disability, but she used it as an opportunity to accomplish new things. She continued her studies, learned pottery and started painting. She still found enough time to publish her first book in the process.
On the occasion of the International Day of Disabled Persons, Shahrvand daily had conducted an interview with Ms. Alipour, who for many years was struggling with SMA. Following are excerpts from this interview:
Q: At the age of 29, how much do you feel physical and emotional changes you go through?
A: Honestly, my mother says I had no apparent symptoms at the beginning, and most of the time I could not move my legs. Gradually, more specific symptoms of my disease were revealed. In the meantime, I was having trouble swallowing food, and my spinal disorder made my heart and lungs squeezed. In fact, throughout all these years, I constantly encountered unknown pains that I had to identify and cope with.
A: At first, I faced personality crisis. I constantly searched on different sites about my disease. With the information I learned about the SMA, I found out how serious it is. I told myself the more you become obsessed, the harder life gets for you. So, I decided not to think too much about my disease, and not to be afraid of it. I decided to go for the things I liked, such as writing, painting and so on.
Q: Have you studied at university?
A: Yes, I was studying computer sciences, but unfortunately my dad passed away when I was a freshman and I had to quit.
Q: An obvious feature of Samira Alipour is the wheelchair she sits on. Is this built specially for you, or SMA patients generally use this type of wheelchair?
A: Since my body has changed in shape, I could not sit on ordinary wheelchairs. That’s why I ordered the wheelchair to be able to do my social activities on it. Therefore, I ordered this model, and they built it for me. Although it’s hard to use this wheelchair, I still use it to go everywhere. I go to the movies, concerts, restaurants and I do all my social activities. My first concern was to be comfortable on my chair. This electric wheelchair has belts and shields that keep me on the seat.
Q: What role your social networking experience has played in your life?
A: Social networks are the voice of the voiceless. The same thing happened to me as well. I feel my followers on Instagram now see me as a person who has a lot of hope for life. For example, the first dubsmash I made was very well received and people were like how wonderful this girl is doing ordinary things. They even complimented my appearance. This gave me a very good feeling.
Q: Tell us about your book. How did you manage to publish your diaries as a book?
A: I published my book without the help of any association or organisation. Even after my book was published, we decided to sell it online and I still get orders for it.
Q: What is your book about? Is it romance or is it something else?
A: A collection of my scribbles and poems. One day a publisher called me and said it’s a pity that you do not publish them. So, I decided to publish my scribbles and in fact my writings.
Q: What are the things you have always looked forward to do?
A: I’ve always wanted to teach pottery. Or, for example, I practiced Photoshop for a couple of years, and I really wanted to work in an atelier. However, traveling was a serious challenge and therefore I had stayed out of work.
Q: Today is the International Day of Persons with Disabilities. What do you have to say?
A: I believe that every day is my day. I hope only one day would not be a special day for people like me. As citizens, we do have some expectations that need to be regarded.