“Meeting other people with Spinal Cord Injury is important”
Life has unique ways of making us come across new people who can leave a lasting impact on us. My first meeting with Rafat happened by chance. I was in Mumbai for some office-related work and got to know about a meetup at the Gateway of India of fellow people with spinal cord injury. This was the first time that I would get to meet people with SCI from my state – Maharashtra. This was the only time I’ve been face-to-face with Rafat. Her SCI story is the most unique and the fact that she has a connection with my hometown got me closer to her.
Rafat Siddiqui’s #LifeBeyondSCI
I love the place I was born in, a small town in a big city Nagpur but brought up in aamchi Mumbai. Being the eldest in the family with two younger siblings has its pros and cons but even today after 35years I get the same love as when I was a toddler. Yes, I have made some sacrifices in terms of toys and chocolate and roles but I don’t have any regrets. With all the ups and downs my parents gave us a wonderful life with almost everything we asked for except a Scooty which I’d been asking for right from a very young age of 15. I completed my graduation, got into a part-time job nearby our house immediately along with a computer course with the hope of getting a scooty. I was a good rider but somehow as though they knew it wasn’t for me.
Then what, got a good rishta. Lo! Got married at 23. No doubt a wonderful family again and a super supportive husband who’s still by my side after 10 years of the accident.
Life was going great. I had a lot of responsibilities being a working woman and a wife. Getting up early in the morning, prepare tiffin for all including myself, breakfast for my in-laws, filling up the water tanks, explaining the housemaid the rest of the chores for the day and running off to work in that overly crowded train of Mumbai and returning the same way, freshening up with a cup of coffee, small talk with the in-laws and back to the kitchen for dinner preps. No doubt life was very busy but I loved every bit of it in fact even Sundays wouldn’t be free as there were extra farmaish (requests) of food and snacks etc.
It was my brother in law’s wedding and I had just quit my job. Not because of pressure from others but because I had fixed it and wanted to take up the whole and sole responsibility for the wedding. Our house was going through renovation, there was shopping, I was running around for all the wedding-related work and most importantly I finally got my Scooty this time for small day to day errands. I took a few long rides and it was awesome. My childhood dream had now become a reality. But we had no clue of what’s in future because of this dream.
It was a beautiful morning in February 2010. I had to take an unwanted and unplanned trip with my husband to his office due to an emergency. We reached on time even though there was a lot of traffic. Returning would have been easier because there would not be any traffic and I could reach home just in time to catch up my day’s routine. Nah, that day had another plan for me.
On the way back with no traffic, riding at a mere speed of 50 Kmps and no accident or bumping into another vehicle, I just fell off my Scooty…just like that (yes, the mystery remains unsolved). Luckily, my sister who was sitting behind me did not get hurt. Even the Scooty was unscratched. She found help to take me to the nearest hospital and informed family at home. After all the required tests, scans, MRI’s and what not, it was concluded that along with n-number of bruises and concussions – I have got SCI.
After all the possible operations and stabilization of my cervical, the Doctor immediately said “That’s it, this is how she will be… Neck down no movement, no sensation”. For my both families this kind of situation was unheard of and unknown. None of them even knew what a vegetative state is. At that time my husband said “whatever that is, however, the condition is, I am with her” (still blushing)… My father is very practical in life and within a week or so he found every possible alternative that could have helped me to recover but there was no option other than physiotherapy.
The day I reached home from the hospital he had already arranged for some therapists to check my condition and get started from the next day. However, he was unhappy with all who visited that day. Within the next 2 days he found another therapist, Dr. Indu. I haven’t met any other person like her in this decade. Her charisma itself is so positive that one just cannot give up around her. She gave me pain and tears but it was all worth it. I couldn’t feel anything, I couldn’t even move my neck, nothing at all. But she still asked me to put all my effort whether we were doing passive movement during the therapy or when I was just lying down and to keep doing the same to let that message pass through my brain. She said you need to keep passing the message to your brain through that gap which is created in your cervical so it doesn’t forget its job. And I kept doing that day by day by day which finally started showing positive results within 3/4 months’ time. First I was able to move my neck, then my fingers, and then gradually I got better at trunk control… finally from nothing to something. This gave me the strength to do more and more and that only led to good.
Meanwhile, my father and husband kept on their search to add on to my improvement that landed them on “Stem cell therapy” (SCT) which even today has biases. He said, it anyway is on trial with no side effects so we can give it a try. After checking with “Neurogen” hospital owned by the well known Dr. Alok we found it was too costly. From the same place we came to know about “Sion hospital” where he also consulted. Being a government hospital their charges were minimal but they had a number system. I was only 6 months into the injury when I met Dr. Alok. He tried and accommodated me saying my body may show good response. It was a difficult process, 2 days in the hospital and a lot of exercises after returning. Now I don’t know if the stem cell therapy added to my improvement as it was supposed to. But within 6 months of hard work after SCT I was in a far better stage with a little sensation in my body and better strength and movement. To top it I started to walk (baby steps of course) with the help of a caliper and a walker. But fate had something else in store for me. I somehow got a foot nail ingrowth, which we didn’t realize had taken a deep root, leading to a huge break from the therapy. Resulting in my body to fall back. After that I had to start all over again with more efforts. But every time my body showed some improvement I would be down again with a pressure sore or weakness or some other reason. That became life then.
Life beyond injury
Still, with minor improvements, I kept going on. I stopped the SCT and moved to my sasural after getting a little better but the routine was disturbed. By now I had kept an attendant (which I didn’t know was an option earlier) to not burden my mother or my in-laws with my work. During this course, I also got an opportunity to work from home as a freelance content writer which boosted my confidence to another level (maybe a sense of a little independence again).
Life became monotonous… Eat, work, a little bit of exercise, and sleep. That’s when my husband forced me to go out a little, in fact he started taking me out to malls or just around to have Pani Puri or just for a stroll. This is when I came in contact with more SCI’s and learned more about their lives and way of living and most importantly came to know about AIIPMR. It’s a not for profit government based rehabilitation hospital especially for the physically disabled people and I must say they are doing a great job there. This again changed my way of living as a SCI. I became more independent and more active and at the same time got into another job for an adventure sports training school based in Pune.
I call my life after SCI as my second innings. After all the struggle we went through the almighty blessed us with twin girls out of the blue and they are 22 months old now. They are the real gift from the almighty for all the hardships that he only had given us. Our life still has a lot of ups and downs and will continue, but their presence has given us a different perspective to life. I now say I am a working woman, a homemaker and a mother with SCI.
Frankly, I always wanted to travel and explore nature especially in India. But life before SCI was too busy and after SCI too demanding. Post SCI there have been short trips to Delhi, Nagpur, Allahabad (my native). But uffff so difficult to travel – almost no accessibility. It would get a little embarrassing at times. However, now I’m okay with people staring at me; or asking for help; or telling every 5th person why am I on a wheelchair.
Traveling or a holiday worth remembering hasn’t happened yet except for our pilgrimage to Mecca and Medina. We always wanted to make that our 1st trip ever and that happened without any detailed planning or meticulous preparation. We just rented a motorized wheelchair for two-weeks and embarked on the trip of our life. After that we were planning a trip to North-East India and came to know about the miracle that was on its way to change our life and priorities completely, our girls. Most recently, we were all set with our girls to take a trip to Dehradun as my maasi lives there. It would have been a refreshing change from the regular, but we got this lockdown. So our plan to travel stands still.
After things get better we will take trips to our native city and other places. Our ultimate travel destination is Maldives with our girls when they are grown up enough to understand and are able to keep it in their memory box.
Message for people who are newly injured
Just like you want to consult the best doctors and therapists for better recovery and improvement, also connect with people who have SCI. I believe more than them nobody else can guide you to live a life that can make you independent, confident, outgoing, and content.