40 year old, Gutsy (she chose this name because this journey is all about having guts) had a traumatic brain injury after a road accident that left her in coma for almost three weeks. She describes with tongue firmly in cheek her journey over two years of rehabilitation, recovery and getting her life together.
The initial incident.
The initial incident occurred as a road accident a couple of years ago. I still have no/minimal memory of 2-3 hours before the incident (of how, when, precisely where, what and why). I was in a coma for almost three weeks, progressing through different scales of coma every 2-3 days. Initially, there were even question marks about my survival.
Impact of the incident
I suffered a Traumatic Brain Injury primarily. I also had a couple of deep bruises and complex fractures in the shoulder, ankle and jaw. They were conservatively managed, given my critical medical condition at that time. The priority for the doctors was to put me back on the life track. Given those circumstances, I am sure I received the best possible medical support then.
Treatment
There were question marks about my survival. So, my initial week was highly critical. I was given all possible life-instilling treatments, and the medical teams were gauging my response to those treatments. The good news was that I was responding well. After seeing me courageously fighting, my family was assured that I would survive but would possibly remain in a wheelchair for life. Again, they were proved wrong.
The realization of the impact, effect on work life, independence
I have a very vague memory of weeks of my hospitalization – the time when I was awake [opening my eyes after many days of coma/deep sleep and being taken around a little using a wheelchair]. As I mentioned, I was progressing through successive levels of consciousness. I remember my family members talking to me or medical staff saying something, but I didn’t know what they were saying. I can recollect now just a few broken sentences here and there. To respond, I was smiling and nodding my head. I was happy to see the faces of my near ones around, even if they didn’t know about it. It felt like a family reunion to me, but at an unusual spot- a hospital. In my mind, I was all fine. I was never used to getting so much attention, so I thought something was wrong with the world. God! I was so dumb (grin). One of my close family members sadly shared that I met with a severe accident, and I was under treatment at the hospital. Also, I was communicated the day, date, time, and place of the accident. I was utterly disoriented in time and space. Still, I thought to myself, okay, accident! How bad would it be? A mix of fractures and bandages or scars all over my body? But, little did I know that a life-altering event had already occurred. Gradually, in the hospital itself, I realised that I was not able to sit and then stand upright without support; I was not able to eat or hold anything with my hand. I was not able to perform my chores. The right side of my body was paralysed.
But here is the magic while I was in a coma! I very clearly remember the ringtone of my hospital attendant; it was so sharp and loud. Also, the dialect of the patient’s family on the nearby bed in the same ward. That was funny! Perhaps I used to giggle in my head with my eyes closed. Also, some familiar songs that visitors played on their phones to kill time while they were sitting next to a sleeping beauty (wink).
After a month, I returned to the city where I used to live for work, but this time with my family. Soon, my wardrobe changed utterly, and all my fancy outfits, shoes, accessories and personal care products were dumped and sealed in a box. The arrangement of things in my house changed. I realised my independence was a thing of the past. I was always quiet and reserved in my family. I was not used to sharing my space with anyone. Now, when I tried to communicate with my friends, my speech was slurred and unclear. I gradually started talking less and less; I became even more reserved and quiet. I would only speak about what was essential. I spoke less to avoid being misunderstood. I realised that my previous social circle had their priorities, and I was far away. That was the point; I started prioritising myself. My further treatment proceeded in the same city, including surgery for fractures.
Rehabilitation - the information shared by the treating team, the challenges and gaps you discovered and how you bridged this gap, how you advocated for yourself
Rehabilitation - Tell me about it; I can write books on this topic! In my case, the thought of rehabilitation occurred a little late to my near ones. And you know how Indian families respond to rehabilitation, “eh..these things can be done at home, why come here and waste our time and money!!” Like a typical Indian family, there were decision-makers for me. Also, I was not physically strong enough to commute to places for rehabilitation at that time. I tried a lot of suggestions from my friends and relatives, which could be pursued online. They were easier: you make payment, schedule an appointment with them and keep yourself free during that time in the comfort of your home, whether it be physio, speech, or occupational therapy. Speech: I agree; many things can be done by ourselves. Only an initial hour of guidance is needed (or maybe a monthly reminder); the rest depends on you. Then, you start finding content on the internet/books to advance you to the stages of speech progression. If music interests you, then try singing. I used to be a good singer; I try to sing various songs (pitches, pace, language, etc). It helps me a lot, both with speech therapy and mental peace. Breathing control also significantly impacts our speech, so breathing exercises are also recommended.
Occupational therapy is also similar; start doing daily things at home that people may insist on helping you with or sympathising with (like eating yourself, serving food to yourself, folding your clothes, segregating similar kinds of groceries together, and so on). Always say NO! “let me try it”. It may take 2x/3x the time or multiple attempts, but you will do it eventually. My social network came in handy for finding the resources. Not only did I receive some helpful suggestions for accepting life as it is, but I also connected with Aparna (founder of PatientsEngage). She helped me with some resources she knew and checked on my progress occasionally, like an elder sister.
As I progressed further with my movement, I went from a wheelchair to a walker, then to a walking cane and then to walking independently. I was 100% focused on my health to bring myself back on track. That was my only choice if I wanted to grow further. My neuro consultant was tired of listening to the same symptoms I had; he clearly said after six months that his job was over and now I needed excellent rehabilitation. I visited a well-known hospital in the country known for its rehabilitation. But I was disappointed, to be honest. Firstly, the energy/effort I invested in visiting the hospital was much more than the inputs I received. I returned with suggestions and exercise regimens similar to those I had been receiving. I was so determined after coming back that, come what may, I would make it. I stuck posters and charts of my day plan for speech/ physio/ occupational activities on walls. The sad truth in India (unlike Western countries) is that rehabilitation is not given the value it deserves, not by doctors, the patient or society. As a result, the rehabilitation sector does not attract the best workforce because they are considered secondary to doctors and given secondary treatment. In fact, in an injury like mine, rehabilitation would have a 70% role; the rest is treatment (like medicines).
During my consultation experiences for rehabilitation, either I was late to approach them, or I was early to think about a particular step. I realized we need to listen to our bodies. Every human body is different. What worked for me may not work for someone else or may even work better. I came across a quote during my journey and realised it to be very accurate- “Just listen to the smartest doctor in the room- your body will tell you what works and what doesn't”. Even today, my walk is not normal, but close to normal. The good news is I am learning where I am going wrong and trying to correct it consciously by reading further about it. It’s just a matter of time to realize when my conscious effort will become unconscious.
The challenge in finding the right team
Resources you found helpful
YouTube videos, TED talks, motivational quotes, books. Make books your best friends; they don’t change based on the situation.
Regular follow ups
I did regular follow-ups for 1-1.5 years, but then I did only when I had something to discuss. Sometimes, you feel motivated or demotivated after follow-ups based on doctors' reactions. We forget that they are also human beings; they may have good or bad days, and accordingly, they may respond.
Where you have reached now, effect on personal life and what you see as the future
I have reached a much better place physically, emotionally and mentally. I am stronger with this experience my life gave me, and I live with no fear. I am very confident about my abilities to deal boldly with whatever challenges this life will throw at me. I don’t regret or crib about it; maybe that’s how it was meant. I do cry sometimes when alone, watching my pre-injury videos full of life, but that’s because I feel bad for my parents, who saw me in my worst form. My parents had to literally grow me all over again like a kid, teaching me to walk, talk, eat, even feed at times. For any parent, it would be the hardest thing to watch their child in that state. God! Please make me healthy enough to be able to support my parents when needed. I know things can never be the same again, but if I am able to reach 80% of my body potential, I will be happy.
How has the TBI journey changed your approach to life?
I learnt a lot; I read a lot. The almighty plans experiences in our lives to teach us something we need to know to be better human beings. The first thing I learned is self-love. Perhaps I did not love myself enough in the past. Through this TBI event, I fell in love with myself. I could connect with myself and grow spiritually. On a similar note, I attained more self-awareness and mindfulness of self, others and surroundings. This accident impacted my speech, but I realized that we give too much weight to speech. So, I learnt the power of other modes of communication, like written and non-verbal, which are very powerful when used effectively. This TBI journey is a constant process of learning, unlearning and relearning. For e.g., for a simple thing like walking, to start with, I learnt to walk under some limitations, like one side being weaker. As I grew stronger, I realized my walking style was wrong, and that was causing other issues like knee pain (unimpacted side), so I had to unlearn that walking style and relearn the correct one (which took almost a year). I found a new appreciation for how the human body is designed. It’s wonderful how both sides of your body work in sync, be it limbs, eyes, ears, or mouth. The world would be weird if the organs of both sides did not work in sync. For instance, your left ear hears something else after it’s heard by the right ear, or your left eye has a vision different from the right eye, or limbs move in different directions. The human body is a miracle, which we often take for granted.
Support (including mental health) and understanding - family, friends, workplace
This healing journey after traumatic brain injury is forever. Physical and emotional support are essential ingredients; the proportion may vary individually. In my case, I required physical support for the first eight months; after that, I needed much emotional support.
So, one needs the right support system as the healing progresses. Coming back to me- if anyone comments ‘you look fine! My response (in my mind) sometimes is, “Yes, I look fine, but I don’t feel fine.” I can't help; the show must go on!
Physically, I can manage myself well. While I don’t need to use mobility devices, it helps if staircases have railings. I listen to music, watch or read something, and talk to old friends for emotional support.
My workplace supported me very well for around 4-6 months, but people don't understand that recovery from TBI is a long process. They treat every injury like a bone fracture; a fracture occurred, support was provided for 6 months, and now the employee should be fit and fine. In short, most people at the workplace expected miracles after 6 months and were disappointed, so they gave up on me. Artificial glass ceilings have been created, and they are rigid. I faced ridiculous incidents where people even doubted my intellectual capability. Sadly, most of the people I come across at work are socially awkward, self-involved and insensitive. However, all this while, I have given my 500% (much beyond my capacity) to prove my worth at every step (sometimes outshining others). I realized nobody cares; They don’t need me. I always stick to a thumb rule in my personal or professional life: if a place/people don’t value your worth, it is time to move on.
Advice to others in a similar situation and their families
My advice to those who have faced such a situation is to have faith in yourself. You are way stronger than you think (both mentally and physically). Be your own best friend (this tip will come in very handy)- pamper yourself, talk to yourself (positive self-talk helps), express your feelings to yourself (increases self-awareness), pat yourself for small accomplishments, motivate yourself to keep going no matter what people say, enjoy in your company, treat yourself very well. Remove all your fears and say this to yourself – “the worst has happened. From here, you are only going to rise!”
Advice to their families – Empathy is the keyword that will help how to think, feel and act in such situations. Families are obsessed with hindsight bias, but that is a BIAS. Look ahead! Every child is different, and so is every case of Brain Injury. Do whatever it takes to help them grow from here- physically, emotionally and mentally. They will be forever grateful.
