Rajesh Arora had a brain stroke in 2016 at the age of 51. He recently completed a biking expedition to Umling La Pass, which at 19,024 feet is higher than the Everest Base Camp, riding up to the Pass twice in one day. We spoke to him to understand his journey to reaching this point of well-being after the stroke.
When and how did you have the brain stroke? Did you have any symptoms?
I had a brain stroke in 2016. I had no pre-existing conditions before the stroke such as a heart condition or hypertension. I had no symptoms before I got the stroke.
I have always liked adventure. Before the stroke, I led an extremely active lifestyle. I have done the Himalayan car rally, sky diving and deep-sea diving. As my next adventure, I decided to cycle from Delhi to Leh.
To prepare for this expedition I used to cycle every day as practice. I was neglecting my food and drink and June and July were very hot months. I was also not getting enough sleep. Any free time I had I spent practicing. I was also under a lot of stress and was working very hard.
On the evening of the sixth day, I felt dizzy while cycling. I stopped and started again but experienced the same dizziness. Luckily by then, I had entered my house and when my guard asked me what had happened I could not reply. There was a searing pain in my right arm and I could not talk. My son and wife realized that I was probably having a stroke and rushed me to the hospital.
We reached the hospital in half an hour after the stroke. The doctor said I was very lucky that I reached the hospital on time as that helped to lessen the effects of the stroke. I was in a coma for 4 days.
What were the effects of the stroke on your body and brain?
I had a multitude of problems. I developed aphasia, ie I struggled to speak clearly and also try to understand what people were saying. I experienced a loss of memory and balance and had dizziness and tinnitus (ringing in the ear). I had tremendous pain and a burning sensation in my right arm. The vision in my right eye was impacted as well. My walking was affected. I had headaches. It was a very tough time. I was very sad and confused as I could not understand what was going on with me.
Please tell us about your recovery and rehabilitation journey.
For the first 4 days in the hospital, I was in a coma and then we started medication and physiotherapy. Since I had aphasia and could not talk at all my wife and family could not understand me. We started speech therapy and working on my right side in the hospital. I was more clear about my challenges after the first 1-2 months when everything was so difficult. After 1.5 years of therapy, I still could not talk easily. I first practised talking in Hindi at home for two years and then went to the USA for 6 months for speech therapy in English. I started with vowel sounds, then moved on to small words and then sentences. I used to speak in 3 languages but now due to the aphasia, I can only converse in a mix of Hindi and English and I still have difficulty with big words. I practise speaking a lot and so can speak well now.
What rehab regime did you follow?
I worked with physiotherapists for my speech and mobility. One day I decided to let go of all the medication except the blood thinner and focused on Sujok magnet therapy and yoga for my recovery. I was lucky that these two things helped me to recover.
I let go of all the assistance I was getting from nurses and started doing tasks such as taking a shower or eating, independently. It was tough to begin with, but I persisted, and it got easier. A video of a man who was swimming even though he had no arms and legs inspired me to try swimming even though the doctor advised against it. I thought if he could do it, so could I. Initially, I found it tough but then I was swimming regularly. I believe that doing things on my own aided my recovery.
I have not yet returned to work, but I can use the computer and write. I will get back to work in some time. I am active in other things such as the Support Group for Stroke Survivors, which gives me a lot of satisfaction.
What were the emotional challenges you faced and how:
I was despondent and confused. I did not know what had happened. I could not talk and just blabbered so no one could understand me. There was no point in anyone coming to visit me as we could not have any conversation. Then I changed my attitude. I thought ok “Jo ho gaya woh ho gaya. What can I do now to make my life better”? This change in my attitude made my life easier and I found a new sense of purpose and recovery.
Once you got better what were the activities you started doing again?
After 2.5 years I was better. I started taking small walks. Then I started doing small amounts of cycling to better my balance and then started driving. I went to Kashmir on a trek on a mountain that was 12000 feet high. This trek gave me the confidence that I can do things.
Then after almost 5.5 years, I decided to buy a motorcycle. My family was upset and my doctor was also against it. But I was adamant and my wife and children finally agreed with the idea. I bought a KTV motorcycle which is an adventure bike.
The first day I went for a ride for 30 minutes and then came home and slept for 4-5 hours as I felt exhausted. After that, I would practice for half an hour daily and then sleep to rest. After a brain stroke, riding a bike is a bit tough. The eyes and brain get tired of managing the traffic on the road. I practiced on small, side roads and luckily had no mishaps.
After that, I increased my riding time to one hour for 2-3 months. When I felt more confident I started doing jungle trails on weekends organized by the KTV bike company. These trails are not on pucca roads but just paths in jungles. It challenged my brain and body but I enjoyed it and grew in confidence.
At one time after the stroke, I had no friends because I could not talk and have conversations with visitors who came to meet me. To get better you need to keep talking to people even if it is tough. I made friends with other bikers at the weekend events and would say hi to them. I asked the bikers to partner with me. I explained my aphasia to them and told them I would talk in a mix of English and Hindi and they could guess the rest. Slowly, with all the practice, my speech improved.
The ride to Umling La Pass:
We were a team of 5 riders who went to the Umling La Pass. My wife and children were not keen on this trip since it was at an altitude of 19024 feet where oxygen is low. It is very dangerous, especially for a person with my medical history. But I was confident I could do it and had no fears. I am lucky my family came around and finally supported me. They believed that I could do it and that is a big plus. Of course, they were very tense till I came back but were proud of me at the end of the trip.
How did you train for the ride?
I practiced yoga and breathing. I held my breath for 1-2 minutes twice a day daily for 3 months. I also walked 5 km every day. Since I had been a trekker before the stroke, I had the experience of functioning at high altitudes and knew that I would be fine.
Did you face any problems during the ride?
Just before we reached 19000 feet, I had a bit of a problem. I was riding and I suddenly passed out for 2-3 seconds. My head slumped forward. I stopped and took proper breaths and was ok after that.
Did the team that traveled with you have to prepare themselves in any way for you knowing you were a stroke survivor?
They did not have to prepare for anything special. But they knew everything about my condition as we had been doing the trails together. If I fell or anything they would always be there to help. We always rode together and were always there for each other.
Riding with me gave them confidence that an older person was with them in their group. When one of my co-riders was unwell one night I was able to help him get better because I knew how to look after him, hydrate him etc. My teammates told me that I instilled the belief in them that they could harness their willpower to achieve anything they wanted. When nature was testing us, I was the most confident, telling them “dekh lenge” (we will see what happens). We made a fantastic team and bonded well together.
Can you describe the expedition?
The expedition was for 12 days in total. We would start our ride in the morning after breakfast and then ride for 200 km, take a rest break and continue. During the day we ate protein bars for energy as there were no restaurants or villages on the way. I also had water with electrolytes to prevent dehydration.
I lost 3 kgs on the trip. It is physically and mentally challenging. You have to keep your full concentration on the riding and keep a sharp eye for obstacles. You have to maintain a certain speed. A small mistake can make you fall 200-300 feet to your death
After we reached the Umling La Pass we ventured further to the last village before China in the Demchok sector. We met the soldiers, had a meal with them, and we came back the same way. I went up again a second time to prove that one can push beyond life’s most daunting challenges if one decides to do so.
What was your feeling once you completed the ride?
I felt elated that I had completed the ride. I felt that “maine kar diya” (I have done it). I offered my gratitude to God, my family and everyone involved. Without gratitude, we are nothing at all.
Where and when is your next ride planned?
The next trip is planned for the 28th Sept 2024 to Nepal. It is a journey of 850 km. This route is the Mecca of Indian bikers along with Ladakh and Zanskar. It is a tougher ride because the roads are rockier and there is more snow here. We are a team of 8 people on this ride. The training remains the same – walking, yoga and breathing exercises. I am also eating more to build back the weight I lost on the earlier expedition. I am not doing anything special. My wife is in charge of my nutrition.
How do you manage to retain your fitness levels? How often do you meet your doctors?
I am not in touch with the doctors for the last 5 years. I have no other medication except for the blood thinner. I do Sujok therapy and yoga.
I firmly believe that the mind is a powerful machine. Your thought should be, “Main kar sakta hoon” (I can do it). I am a very determined person. If I want to do something I will. I have had huge problems and challenges after the stroke as I told you. It is good to get help when you need it but if you want to cure yourself and become independent you have to do your work yourself. I had to take small steps and learn to eat, shower etc but I persisted and could do it.
I used to get angry with myself when I could not do more and be independent but then I changed my attitude. I accepted my speech, brain and body problems and I started to enjoy myself. I adopted an attitude of enjoyment to my recovery. I would have pain, but I would say “Oh kitna pain hai, mazaa aa gaya” (I have so much pain, I am enjoying it). If I fell from the bike I would laugh and say that was fun. I explained to myself that if I reacted with shock and sadness to the pain and hurt then I would feel it. If I say to myself that I am fine and laugh it off, it becomes easier to deal with it. You have the ability to change your thoughts.
My motto has been “Ho gaya, tension nahi.” (what has happened is a reality. So, be it) How can I make my life better? And how can I be better at the next thing?
I talk about my stroke in the support group and with other people who have had strokes to inspire them to lead a fuller life. I know 8-9 people personally who are now going to work, driving and leading a normal life thanks to our discussions. They also have adopted the attitude of “main bhi karoonga” (I will also do it).
As told to Smita Vyas Kumar
