In 2010, I started having an electrifying pain initiating from the back and moving up to the right arm. I took it lightly until it started interfering with my day-to-day routine, and I had to stop going to school because of the sharp excruciating pain. There is a general lack of awareness in our country about spinal cord-related issues therefore, my parents did not have any idea that this would turn into something serious. However, I went to an Orthopaedic surgeon and he diagnosed that I had tuberculosis of the bone. There was no proper testing to determine this and yet he prescribed me heavy medications. As I started with the medication, my condition got worse. Along with the pain and hard collar on my neck, I started feeling weakness in my lower limbs. On one or two occasions, I fell while walking. Instead of getting better, my situation worsened. One night, I slept with incredible pain in my body and general uneasiness. The next morning, I woke up in a paralyzed state. I could not move my legs, or feel them. I was rushed to the hospital, and the Orthopaedic surgeon that had treated me before suggested that I needed emergency surgery.
The first surgery that I had was actually supposed to be a biopsy of the material that was pressing my spinal cord, but the surgeon ended up removing a part of my vertebra without any prior consent. Consequently, my spinal cord became unstable and the biopsy was sent out for testing. After testing, it was diagnosed that I had a giant cell tumor of the bone. People usually have this type of tumor on their knees, ankles, elbows, or any joints, but in my case, it was on the joint between the neck and spine. It was a rare case and my situation had become sensitive. I went in for another surgery which was a decompression surgery. Most of the tumor was removed and four of my vertebras were caged using a metallic wire. There is still some part of the tumor that was not removed in the process because it required an incision similar to an open heart surgery without any guarantee of success. Therefore, I did not go ahead with the process. After the surgeries, I was supposed to get into rehab but my country did not have any facility to ease the process. I was discharged from the hospital without any guidance or further treatment plan. It was incredibly difficult to manage my lifestyle with spasticity, lack of information to handle my bowel and bladder, limited movement, and no clinical support. I designed and managed my rehabilitation on my own. With physiotherapy and acupuncture, my body started getting better and more flexible. However, there was still no backup regarding my lifestyle. Consequently, I had to manage that myself too.
With time, I started learning basic life skills to survive as a paraplegic. There was a lot of adjustment and I’m still trying to understand my body after 12 years of getting an SCI. Every day brings a new challenge, but I have and am growing. I completed my education and I am working as a creative and content writer for the past 7 years. I have self-published two books and working on the third one. I am also a freelance screenwriter. Moreover, I am a social activist for the basic rights of persons with disabilities. I have created an association with an organization to actively pursue my activism.
The biggest problem that I faced in my journey was the lack of resources to manage my SCI. There are no rehabilitation centers, or support groups to help me create a better lifestyle for myself. If it wasn’t for my family and friends, I wouldn’t have come so far. With their support, I was able to create an almost independent lifestyle for myself, and yet I am working on it.
I am struggling to find reliable rehabilitation facilities. It includes equipment and lifestyle support. Moreover, I need a consultation to build my life in a way where I can handle SCI effectively such as finding a fitting solution for my bladder management. I am yet struggling to be completely independent to be able to pursue the life I want.
