My Story: Year 2012 October
I am writing this so that I may share with you my personal journey of stroke and recovery. I understand that you have been given much advice and recommendations from many people and we gratefully acknowledge the same. But I appreciate that your problem may be unique with reference to the type of stroke, medical history, personality and goals. I intend that this story be insightful and inspiring for you and for your loved ones.
That Wednesday morning lacked the usual hectic routine since my boss was on a holiday to Ahmedabad. He has gone to celebrate Navratri; I got ready and left the house probably at 10 am I got into my car and parked it close to the bus stand opposite Jayadeva Hospital flyover and caught a bus to go to Whitefield in Bangalore. I got busy on the mobile phone and journey was one and a half hours. The bus reached Whitefield convention centre. At the centre I met one of our good friends. His name was Shaukat; he is the Assistant Director of IT of Andhra Pradesh government. My boss called me on my phone and I was speaking to him for half an hour. While going round the stalls, asking questions, suddenly I experienced speechlessness. My wife called me up and I kept cutting off her calls. I reached the Andhra Pradesh stall and then asked the person there to call up my wife. There I explained my situation that I could not say any words. The person at the stall asked me to have some water and I asked him how I was doing. But alas words can’t escape my mouth I could not say any word. I did not think that I was having a stroke. I was thinking that I couldn't say a word due to a mistake in my voice box, or the pharynx, the idea of occurrence of a stroke was remote since I was standing; my both arms were functioning as well as the legs. The walk was normal and I got into the bus to go home. I could not fathom how the bus conductor was taking my instructions.
Fortunately my wife called up as I was sitting in the bus. The bus was empty so I gave the mobile to the conductor. As my wife explained the situation I was in that I was having a stroke akin to a heart attack, the conductor looked at me and saw that I was hale and hearty. Somehow the urgency had not yet on dawned on him. The bus driver had some inkling, so it dawned on him that if he did not hurry, it would be too late. The bus went over footpaths and he sped past bus stands, waiting only for about 30 seconds for the passengers to get off and get on. All the while the stroke was still bleeding inside, a total of 2 hours.
What I am trying to do? Get help. I was trying to make a plan, and get help. I was shocked when I did realize that I could not speak. More and more incoherent words escaped from my mouth. I was not able to speak.
The bus zoomed on to the Silk Board junction, in about 40 minutes. I was in a lurch, I could not speak and to add to my woes, the traffic was heavy. It was about 2 in the afternoon; I was slightly disoriented, deep inside my brain the bleeding was left unabashed.
Till date I am surprised that I can recall every bit of information. There was man who was dressed up in white, a man who seemed out of nowhere sitting next to me. When I called up my wife to check where she had parked the car was parked, my speech was garbled. The man in white took my phone and understood what my wife was trying to say. In fact he even escorted me there to where the car was parked. Even as my wife got down, to thank him; he was nowhere to be seen. Was he an angel or a passer-by? God alone knows, that he was the angel sent down to help me. I don’t where he has come from and where is he is gone.
My wife had already called up her cousin Kalpana who was a doctor, Dr.Kalpana was planning to leave the hospital just then and stayed back to see me. Archana (my wife) drove like a mad person going and even side roads to one way roads in the wrong direction. I remember telling her to go slow as an accident could happen. At last we reached Apollo Hospital; the doctor was waiting for me, the stretchers and all. When asked who the patient was, Archana’s friend (Tarunnam) who had accompanied us, looked at one another, said that the patient was me. After that I was wheeled in to the hospital. At the point I could walk and looked normal.
I think I had every possible test in the world over the course of the next 12 days I spent in a Apollo hospital. Four days in ICU and another six days on the neurological floor didn't yield many answers for us or for the doctors. What they knew was I had a hemorrhagic stroke, with a pool of blood that spanned nearly the entire length of the top of my head from front to back, on the right side. According to the NIMHANS, 37.5% of hemorrhagic stroke results in death, compared to 7.6% of ischemic stroke. Additionally, there is more than a 50% fatality rate with subarachnoid hemorrhage, like I had, and 25% of women die within a year of their first stroke. Another 25% will have another stroke within 5 years.1 Great statistics for a 45-year old, previously healthy Karate expert.
Let me tell you something that you already know. The world is not all sunshine and rainbows. It's a very mean and nasty place, it don't care how tough you are. It will beat you to your knees and keep you there permanently if you let it. You, I, or nobody is going hit as hard as life. But it not about how hard you are hit; It's about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That is how winning is done! There was I, who was thinking it would not be possible the stroke would never get me, I was always thinking that I was an invincible; after all I go to the Gym every day, swam about 45 laps every two days, and the fact that I was a black belt in martial arts, in the various forms of Tai Chi, Ninjitsu, Lian Gong Shi Ba Fa and Dao Yin Yang Sheng Gong.
The Stroke Aftermath
When I first awoke later in the evening, I was shocked to discover that I was still alive. (Heartfelt thanks to the medical professionals who give me a new life, and gave me another chance at life- even though no one had any idea what or how much I would ever recover). My body was in a hospital gown and I was resting in a private room. The bed was partially raised with, with an aching head slightly elevated on a pillow. All those little things that I had taken for granted for all those years had now all become tasks. Things like eating; cleaning my teeth, brushing my hair, had now all become very difficult for me. After one of my examinations, they asked me to sign my name and I wasn’t able to so I had to put a cross down instead. By now I had started to realize how my life was going to change. Or that is what I thought, in the short term anyway. After not being able to sign my name, I then made a point of filling out my meal order each morning while in hospital, writing my name and room number on the top. Most people would have no idea how difficult this simple task was for me, but I persevered. When I got home from hospital, each day I would write down the alphabet in both upper case and lower case, and then write the numbers from 1 to 10.
After spending 12 days in Apollo Hospital, the day had come to be discharged. I am generally feeling a bit of relived and could not want to get back to my son, hold him in my arms. My wife warned me against lifting him up, that’s when I realized that my arms could not support the weight of my son. All those memories flashed before me, once I used to carry the little doll over me, lifting him up, carry on my shoulders and I even walk a couple of kms if need be. I am robbed against carrying him up, that was huge pain for me.
In the beginning, pillows stored against me, so that I couldn’t slip. For a week I was propped with pillows, an incident happened. I was resting on my bed and parents had to go for grocery shopping and my wife had gone to work, and my brother was still sleeping inside the bedroom and there is no one around, suddenly a bell rang, with no one around, I ran up to the door and incidentally I sprained my arms, yes that’s I had lost month of therapy.
Learning to read again was by far the hardest thing I had to do. I don’t know if those brain cells had died or what, but I had no recollection that reading was something I had ever done before, and I thought to myself, the concept was ridiculous. Reading was such an abstract idea that I could not believe anyone had ever thought of it; much less put forth the effort to figure out how to do it. Although Poornima was a taskmaster, a kind one though, she was insistent about my reading. My brain remained in pain over the task of learning to read for quite some time. I had a real problem concentrating on something that complicated. I had a real problem in recognising the alphabets, let alone how did they sound. For 8 months I had even trouble in speaking two or three letter words, in fact I could not even say names of Archana, my son, Dev or even amma and appa.
Although I struggled and struggled with reading, my brain was in slow progress. The entire right side of my body was now numb because of the stroke... I couldn't barley walk for 2 – 3 months, I barely use my leg. I was so scared that I might have fallen off, that I had use to crutches for almost a fortnight, then slowly the strength returned back to my leg, since my operation I was operating without crutches. I had almost no use of my right hand, I had to relearn numbers and counting, my ABC's and how to write (as a lefty), how to talk, how to go to the bathroom... even the simplest task like tying my shoes took 20 minutes or more and sometimes ended with me just giving up. The majority of the right side of my body was permanently numbed... I could still feel pressure but I lived with the constant feeling of "pins & needles" all along my right side. Some things took many months to relearn, some things took years, and some things would take longer or never really get back to "normal." I would always have the numbness in my right side, but I eventually regained use of my right hand. I was eventually able to mostly think and talk and write like most people, but I definitely had a lot of mental and verbal issues- I still sometimes mistakenly say some words instead of or mix up other words or numbers... it takes a lot of effort and concentration to think and say simple things sometimes. I have trouble remembering things and multitasking- I basically have lots of different issues that I'll probably struggle with forever, some obvious and some not.
I had lost so much, struggled with so many things, and couldn't accept that I would no longer be the same as I was. I sunk into the deepest depression, honestly thinking about killing myself. After those dark months, medication and therapy slowly pulled me out of the worst of it, though I still was a bit of an emotional loose cannon. Still though, I realized I was lucky to be alive and I came to the conclusion that I needed to turn this negative part of my life into a positive. I started to focus on moving forward with what I had. I realized how important it was for me and everyone else to stop taking their lives and the things or people they have for granted... and especially to love themselves for being whom they are.
Recovery, however you translate it, is not something you do alone, and my recovery was completely influenced by everyone around me. I feel the need to treat me as though I would recover completely. Regardless of whether it would take 1 year, 3 years or lifetime, I need people in my continued ability to learn, heal and grow. I have heard doctors say “if you don’t have your abilities back in about 6 months after the stroke, then you won’t get them back”. Believe me, doctors can be wrong. I noticed my ability to function and improve continued even after 2 years. The brain has tremendous ability to recover lost function.