Juvenile Rheumatoid Arthritis and Spinal Cord Injury

12:47PM Mar 7, 2021

Speakers:

Dr. Jyothi

Rita Agrawal

Keywords:

sci

disability

life

rita

person

joints

people

support

childhood

condition

doctors

international women's day

individual

movement

society

friends

spinal cord injury

woman

spinal cord

cope

Good morning, everybody. Today on International Women's Day, we'll be talking to Rita Agrawal a successful businesswoman and CEO of a chocolate company, who since childhood has dealt with problems in her joints, called juvenile rheumatoid arthritis. She has had operation to replace both the hip joints in 2011. Following the operation, within three months, she returned to work as a center director in a private designing institution in Jamshedpur. She has also worked as a counselor for two decades. More recently, she had an unfortunate event in the form of spinal cord injury, which has caused weakness in her lower limbs. Before we start talking to her, a brief introduction of her medical conditions would be useful. Juvenile rheumatoid arthritis is a long term condition that causes pain, swelling and stiffness in the joints in children. As, in childhood, the joints are still developing inflammation, contractures and joint damage affects mobility and strength of the joints. Some individuals also experienced other problems in their body, and also more general symptoms such as tiredness and weight loss. This condition can be associated with periods of aggravation of symptoms called flare ups, and periods when the symptoms are less severe, called remissions. Treatments for this condition include taking medicines both for pain relief and slowing the progress of the condition, and supportive treatments such as physiotherapy and occupational therapy to help mobility and manage activities of daily living and if extremely severe joint problems are present then surgery may be required. Coming to the next medical condition that Rita has, it is spinal cord injury. As the name suggests, it is injury to the spinal cord. The spinal cord is a bundle of nerves and carries messages from the brain to the rest of our body and brings back messages to the brain. These messages help us move body feel pressure control breathing, bowels and bladder and many more functions. There are many reasons why the spinal cord may stop functioning. Most commonly, it could be due to trauma, for example, following a fall or a road traffic accident. It could happen secondary to degeneration of the backbone or infection in the backbone or even following a spine or a back surgery. The higher the damage of the spinal cord, the more movement and sensation will be lost. For example, if the damage is at the level of the back, the lower limbs and possibly some stomach muscles are affected. Well if the damage is at the neck, then it would affect all the four limbs, stomach and some chest muscles. The degree of loss of movement and sensation will vary from person to person depending on the severity and level of damage. The long term outlook in persons with spinal cord injury would largely depend on the support they get from their families, friends and employers; some people are able to return to their previous job roles while for others, it may mean that they need to retrain in a new profession. In the Western world, there is more support available from the government or and also from the employers in the form of adjustments at work, redeployment and pension schemes. However, in India, we have a long way to go in terms of supporting these individuals to live a fulfilling life. Today on International Women's Day, we will be talking to Rita about her journey and experiences and how she faced the challenges that life threw her since childhood first in the form of a joint condition, and then now when she suffered recently from a spinal cord injury. With this introduction, I welcome Rita to the talk. Welcome Rita to the talk.

Thank you, ma'am.

My first question to you is you've had a joint condition called juvenile rheumatoid arthritis since childhood. Can you go over briefly what difficulties you've had as a child and this condition, with this condition and how you cope with it?

Very Good morning, ma'am. And I'm on International Women's Day, I would congratulate every single woman for whether with disability or without disability because the society in which we live, I think it's an integral, a woman is an integral part of the society. Since childhood, I have had juvenile rheumatoid arthritis as Dr. Jyothi has very rightly said, it's all about aches, pains and exercises. I was also between aches, pains and exercises and visits to various doctors, whether it is an aloepathy, homeopathy, Ayurvedic, and my parents, left no stone unturned to get me cured. But apart from that, they never deterred my education. My mother, the pillar of my, I will say the pillar of my success, the pillar of my even existence is my mother. Of course, she is a woman, and she is the pillar of my existence. She always, from the very childhood, from the time I recall knowing myself, she always told me that these are small things she never made my disability loom large on me, she always made me feel that this is a small, very small thing which has occurred to me, and I still feel that juvenile rheumatoid arthritis, although it is a big disease but to me, it was also always a very, like, you know, she always told me jaise (like) other people have cough, cold you have a bone disease, she never made me feel the fear of having a very devastated disease and uncurable disease. And also my doctors, I would like to mention here the CMC Vellore where I have been treated from my childhood, they have given me immense support from the childhood and they have always made me feel the positive person I have been all my life.

And I take it Rita that your hip joints were mainly involved in the condition or did you have other joints affected as well?

I well, in my case, every single joint has been involved in the juvenile rheumatoid arthritis. Luckily, my eyes and my heart were not affected in this disease.

So more recently, you had this spinal cord injury, unfortunate event, and you realized that you were unable to use your legs following this. Can you describe how you felt then? And how did you deal with any negative thoughts you had?

Yes, last year, November, November 2020, I was walking absolutely like a normal person without taking any support of a walker or a stick, but suddenly, my joints started to my body started to give away. We consulted various doctors, whether it is an Orthopedician, whether it's a general physician, but as life would have it, the limb started to give away and it was the movement started to decrease day by day and it was very sudden, and it was very, very sudden and very fast. On the 25th of November, I realized I couldn't move much on the 26th more movement is going, on the 29th I realized that there is hardly any movement in my lower limb. Immediately, I was rushed to Kolkata, where my elder brother in law is an orthopedic surgeon. He took an appointment even though it was a COVID time. Thankfully, thanks to him and his son who is an IPS, IPS Abishek. They spoke to the doctors and requested frantically that my condition is not to, which cannot be delayed. And, the doctor, doctor Somojit Basu, he agreed, and he immediately took me in. And it was, it was very shocking. I didn't realize what is happening to me. I was devastated. My family, my friends, the doctors, they helped me cope with this. To be very honest, even now, after three months of realizing that I am an SCI, I don't want to believe that I'm an SCI. I really close my eyes and think that God one day when I get up, when I wake up from my slumber, I am not an SCI anymore, but, but after treatment, after going to the spine surgery center, Delhi, ISIC, after being treated by Dr. HS Chabra, I have realized the sooner we accept the better.It is not easy for anybody. People are having many, many more ailments than me. And I have been fortunate that my upper limbs are working, my brains are working. Dr. HS Chabra categorically mentioned to me, look at your positives, what you have. And I felt living was tougher than dying. It is it is a very honest confession. But slowly with time, I accepted and adjusted to this. It is, it is easier said than done. But I'll say, I'll tell to everyone, every person who is able or disabled, whether it is SCI or any other disability, acceptance and making oneself, keeping oneself meaningfully busy, and financially independent. These are the two things, which are the two I'll say, mantras which has helped me cope with my very much differently-abled status.

Yes, it keeps you going, isn't it? You know, it gives some purpose to life. Yes. Now, that leads me on to the third question: on a day to day basis, what are the challenges you face in your activities of daily living? And how do you cope with it?

On a day to day basis, I do need help. Because especially now, when I was a juvenile rheumatoid arthritis person, I was absolutely independent unless and until I had something to pick up from the floor or sit on the floor, which I couldn't do. But more or less, I would say 95%, everything with adaptations and with a minor help from my parents, but my siblings, my friends, my employers, my associate workers, I was absolutely, I would say independent, but after SCI, especially now when my lower limb does not have much movement, which will eventually come as per the doctors suggest, it is not, it is not certain when it will come and how much movement will come. So on a day to day basis. someone has to pick me, lift me put me in a wheelchair. For a ADL, everyday activities. I don't need absolute help. But I am lucky that I have, my upper limbs are working functioning well. I can brush my hair, I can comb my hair. I can brush my teeth. I can wear my clothes in the upper parts of my body. That is very fortunate to me.

Yes. Having a bath, can you do it by yourself?

Yes, I do. Yes, I can do it. Yeah, I can do it by myself. I need a little bit of support and assistance because there is water involved and soap involved. But there is bladder and bowel as well as mentioned by Dr. Jyothi if people know what is SCI, there's a lot of bladder and bowel management. Since there is no more movement in the lower limbs, I'm still not having the freedom to move around. If someone is around, my parents my attendent, my caregiver, then they put me. They help me, assist me to go to the wheelchair and then I can move out. So that freedom of doing work, that freedom of you know, the joy of you know, I suppose me I want to just sit just now but no one is around, I have to obviously wait for assistance, my caregiver will come and take me to the washroom put me there in a comfort zone. So that is very much there. But I'm working very hard with my physio therapy with my exercises to get back my movement. I've met people who are with SCI and they're, they're doing good, they're walking with Walker, they are starting to walk with a stick. So it is not an impossible thing that one day, you will see me also getting back my move.

Yeah, definitely. Yes. Yeah, I think that should be the spirit, isn't it you kind of have to work towards. and also at the same time, I think, as you mentioned before, accepting what you cant do and taking help when it's available, you know, and because at the same time, you know, you need to be more aware of your limitations as well, isn't it? You should not put yourself at risk. For example, you know, I think I will do by myself.

So after the spinal cord surgery, you have to be very careful about jerks, we cannot do anything with jerks. Jerks means it is very, it is very, very difficult to recover again. So we have to be very careful on you know, being enthusiastic and being over enthusiastic.

Yes. And just I mean, just following on from what you've just mentioned, you know, can you go over a typical day in your life and work just, you know, I know it takes a long time for you to maybe get ready get dressed up and stuff like that and following on from there. What does a typical day look like for you? I suppose it is a busy day, isn't it?

Yes, it is again, a mindset and your, your brains that rules your day and your life is all about it's all there in the mind. Yeah, my day starts with exercise, CIC physiotherapy, meditation, and I am a chocolatier by business by profession, which again, I'll give the credit to my doctors, my family members, my friends who have been very supportive. Although my SCI is just three months old, they have told me spring back to your life and spring back to your legs, your chocolate business cannot wait. And we cannot wait for you to recover so much. And we need to eat your handmade chocolate. So what I do is I start my day with exercise, which is very mandatory to keep me going, and then be with physiotherapy. We actually is we've started taking orders. So I have a worksheet, I keep the worksheet ready in the night. And I know what have to make in the morning. And we have to get it delivered. We are delivering pan India, try to do all that although I am in bed, and I'm sitting in working in the wheelchair. So but luckily, and thankfully, I have got immense support from be it my family members be it my friends be it my siblings be it the courier person, they all give me support, they come to my home, they take the delivery, and I keep the packets ready, and ready to be delivered. And the again, I'll say food and rest are the major influence in my life. Initially, when I was well, food was not a thing of concern, because I could eat absolutely anything. But now since I'm an SCI, I have to watch over my weight. I cannot gain weight. But at the same time, I have to eat something with protein and nutritious diet and not think about my tongue. Tongue part is now the secondary part. And rest, rest is very important for SCI patient because we may need to do push ups. We need to give our body our muscles our parts of bodies, a rest. So, my typical days is interesting. According to me, it's very interesting. Because I do, I love to chat over phone. I love to make video calls. And I'm very talkative, very chirpy, very bubbly person. And God has given me this nature and I love to make friends. So that's it my whole day, 24 hours every day, week is over.

Yes, yes. I mean, I think you've touched upon this about you know, other individuals helping you and having been supportive to you. Now, for people who have a similar condition like yours, you know, what can other people do to help you know, what what have you found useful in people who support you?

That I think once the financial independence comes, a lot of acceptance is there. So till you get your financial, I will not say financial independence means earning big money in lakhs and crores, but meaningfully keeping oneself meaningfully busy. It gives confidence and I think society, individual day can help us cope with a situation. Like in my situation, my family's standing by my side thick and thin. Because what happens is that everything, if it is supposingly, if it's in a higher rack, or it is in a, in a floor, obviously I cannot reach to that. So my mother, my father, my siblings, my friends, my caregiver, yet all around me to assist, but I will say the individuals, instead of being snooty and ye jo bechara wala attitude hai (The attitude to look down) not to give that to the person suffering from any type of disability, try to see what they can do and help them in what they cannot do. And I will say that every individual, whether disable or able, they all have their lifestyle. And I would like to appeal I would like to appeal to the society to help them lead their lifestyle, not to change make them compromise on their lifestyle. So individuals can help us cope with our situations and financially...

They can complement, they can complement know you your lack and then you can whatever you are good at you can you can continue doing that, isn't it?

Yes. And so that they don't feel that we are good for nothing or we are not being able to do justice to what we are trying to do. Supposingly if a person is having any type of disability of a hand the knife and all is very sharp. The people around them can use that and cut the vegetables or anything else and help them to do what they can do. So it will be assist. I will say that assist and be around, be around it gives us confidence. And about the financial part, if even the society, they have big, big if there are so many, I'll say organizations, even we are not aware of, who you know, help immensely, even as I would like to mention, if I had to undergo a major spine surgery and then rehabilitation, which all has, it all, has immense money is involved. So I got, I was lucky, I was privileged, that my family and my friends came forward, but not every individual with a disability and a sudden I'll say...

for medical treatment, yes is that yes, it costs isn't it.

So, I say I appeal to the society to be for the those people who are having a financial stability, please come forward and help people. So that once they get the treatment, they get the proper treatment, they will be able to contribute back to the society.

Yes, and their quality of life will also be so much better with appropriate treatment.

Definitely. So, many people just commit suicide because they cannot, they cannot cope up with the situation, what their life has given them

Do you think life would have been different if you were a man, what do you think?

I dont know if a man would have faced lesser or more hardships. Although I am blissfully single, I think if I were a man might be I would have been told to earn, I would have to earn a living for my family, which as a woman, I am privileged, my parents are still supporting me, my siblings are supporting me, my friends are supporting me whether it is financially, physically, mentally, in every way, I am privileged that my friends, my family, my siblings, my nephew, for come extra, they walk the extra mile for me, but I will just appeal to the society that be more inclusive, be more inclusive, please treat a disabled woman or a man as any other individual, he or she has their emotions, desires, aspirations, please help them whether it is a man or a woman live a normal life. I wouldn't tell that you know, a caged life what happens is that once you are a disabled, you are labeled as a disabled this this I would like to appeal through your... your.... platform. Whether you are able or a disabled, please don't cage us, give us the freedom whatever we can do in our shortfalls, in our privileges, in our aspirations, let us live our life because actually, life is short, and we have one life. So it's just that disability is actually in the mind. And disability is not a curse. But the way the society at times treats us that being a disabled becomes a curse.

And my last question to you Rita is as a successful woman with a disability, do you have any advice you would like to give other women with disabilities?

Definitely, if I if I were not having my chocolate business, if I were not a CEO of my homemade chocolate running successfully in Jamshedpur where we are supplying pan India and luckily the hospital where I got treated, they are shelfing my product because they will found my products not only good, they found it very interesting and very tasty and very, very good priced. So I will say that not only it gives me the financial independence, it also gives me keeps me meaningfully busy. I have something to look forward to every morning. I am motivated. Although there are pains, aches, there are pain waves, if anybody, anybody who is a medical person who will be hearing to our interview, they will know what SCI the spinal cord injury person goes through. The pain waves are very difficult to bear with and it is there with every SCI patient. So it is sometimes it is a low pain wave, sometimes it's more, but since I have a motive to live, I have a, I have an aspiration to do, I have an inspiration to do, I want to complete my orders the next day, I do have the pain. I do have the aches, I do have my share of problems, even though as I'm an SCI, but then you know, I have to set all these to a side, and I have to complete my orders. So had I not have had a business or had I not had anything to do in life, I think I would have be lying down in my bed and brooding about my pain aches all the day. .

Yes, it distracts you, is it, it distracts you from the pain and you know, you kind of wake up in the morning wanting to do these jobs and tasks and complete them and it gives you satisfaction in the life of sleep. Yes, yes.

Yes, And it's not only about money, it's about keeping oneself busy meaningfully. I think if even if someone doesn't want to earn money, and they are financially well off, I can do something which you like, I love to hear music. I love to meditate. So whatever I like to love to read books, motivational books, it does it does help. I will say read good books by good authors. It does help it has helped me. I and I think talking to people who will, you know, who are motivational. I met Dr. I met Mr. ShivJeet Singh Raghav. He's a peer counselor in ISIE. And he is his words, bring on my ears as mantras. So it's like you know, you never know who or what words will change your life. So I like to tell every individual whether you are able or disabled, whether you are a man or a woman to contribute to the society as much as you can.

Yes, yes. It was lovely speaking to you, Rita and getting to hear about your experiences. Your experiences highlight how despite all the struggles you've faced, you've emerged successful. The theme for this year's International Women's Day is women in leadership, achieving an equal future in a COVID-19 world. As women while we take on the responsibility of dealing with our own life's challenges, we must applaud women like Rita amongst us who work to encourage support and inspire others. Thank you very much for your valuable time, Rita. Thank you, everybody.

Thank you, Dr. Jyothi for interviewing me and thinking that yes, we can also make a difference in the society.

Yes, thank you very much. Thank you, Rita. Thank you, everybody.