Dev

We should not Google every symptom because the answer in Google is not the prescriptive answer that one should read.  What we did, we spent a lot of time with our doctors, understanding the disease. And when I was understanding, I made my wife also be part of that entire curriculum of making her understand what the disease was, how it is, what is it, and everything.  So, I would say that the understanding of disease was mutual, not just me being a patient. It was with my wife, who was my caretaker at that time. So, we both went through that same part of knowledge, which helped us, I think so, for her to understand comprehend me better, the pain I am going through or the trauma I am going through and finding new solutions for me. Rather than asking me questions, she tried to find out the answers herself.   

Walking even one block, I can't do it. I used to do. I could walk. I used to walk. I could not walk one block as of today. I have to rethink even if I'm going on any jagged surface because I tend to fall sometimes on those. So, all of these things I used to do it, even five years back I was able to do it. Slowly and slowly and slowly and slowly, I'm seeing that I'm not able to do it anymore.

He was a very straightforward doctor; I have never seen like that at all. But he made it a point that these are the five things that you need to take care of in your life. You need to be very positive about these are the things that you need. These are the medications you have to have. He actually had educated me about every medication, what I was having and why I was having it. So, I think that those small things really help. If the doctor is very open to you, and makes you understand things, that goes a long way. When you start you start believing a lot of things because what do you read and what are told, they map to each other, that really helps.

There are no clutters on any of the places in my house. I don't have chairs and tables or too many things in the walking space, so it gives me at least a walking space, that's one. Two, I have ensured that my garage in my house does not have too much upstairs. It is just one, two stairs, and I am there in my garage. So, I don't ever to take too much upstairs there also. That's two. Three, I think I have put everything on my, everything should reach out to my hand so it's easy for me. I've tried to automate as much as possible in my house. All my lights and everything is automated. If you come down to this house, you will be sad to see my house. It is completely automated. I can see the most automated house in my neighborhood. So, all of my lights, everything is through my phone. Every one of the bulbs, even the bulbs, are there through my phone. I have tried to do it myself, and I've changed everything. It makes it easier for me. So even if I just go and tell Alexa that switch off my entire house, it'll switch off the entire house because it's all connected to each other.

Some people shy out of that because they don't want to know about it. Some people-- I think so my mom, my dad is not there, so it's my mom. She knows about it. She is not over here, she is in India, but she understands my issue. But most of the people or most of the friends, half of my friends whom I have talked to, they don't understand it. Or I would say, in some places, I am hesitant to even share that with my friends and family because I think that either they would not understand and then they'll start contemplating it in a very different or very negative way. So, it's better I don't even talk to them.  
INTERVIEWER: How do you decide who to tell and who not to tell, who to talk to about it?  
Whom to talk to is the person who actually pays a lot of attention to me, I think so. Or who is close to me or who has been not sympathizing on my way of life is the person whom I would definitely sit down and talk and help him or her understand what I'm going through. Generally, I’ve seen, and pardon my story out here, but Indians generally sympathize, they don't empathize with you, which is unlike the Americans. OK? And there's nothing racial about it. But this is the way the society has been mapped. So, they try to sympathize a lot, which I dislike in my way of life.  
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So that's the reason I shy out of people who start off saying, “Hey I'm so sorry that you can't walk.” So, I don't even talk to them. I keep myself very out of it.  

Two of my colleagues, they had MS. And since then, and that actually helped me to understand because they had MS much ahead in time. And one was from UK another was one for, she was from the US, I think.  I could start correlating a lot of things what I had gone through, and I could understand. And I used to talk a lot with them to understand what MS was. And we used to exchange a lot of information. That helped me.

INTERVIEWER: How do you how do you talk to her about your MS?  
I have shared my experiences with her, not the negative part of it but the positive part of it. So, I tell her that this is what it is, but this is how we need to lead our life. She has started understanding that, and I have coached her that, even at the age of 10, whatever she could understand. But I think that she has understood that this is what I am. And believe me, one day, and I'm sharing this very personal stuff. So, one day I was showing her my old DVDs, my videos, and I was climbing the mountain. I used to do that, so I used to climb mountains also. She asked me a question, “Dad, did you ever walk, or you were always like this?” I said that I was never like this. You have a video that proves that I used to do all of these things. I am jet skiing and all this stuff. I saw that smile in her face that it is not like that. And she asked me the question, “Can you tell me what actually had happened and why you limp today?” And then I told her the entire storyline. And whatever she understood. But I found that her reaction towards or helping me has gone up multiple folds, I have seen that.

INTERVIEWER: How has your diagnosis changed your sense of who you are as a person?  
A lot. A lot, actually. I was-- I have confined myself. I used to fly. I have now become very confined to myself. Very much. I will say I have put myself in a box of four corners, which was never, it is unlike the way I have been in my life.  
INTERVIEWER: How do you feel about that new, your box?  
You're talking to a very positive guy. The problem is that I would not be a good subject because I have always thought that, yeah, the four boxes, yes, it is the four corners of the box, but sometimes, some days I feel very left out. I feel very alone. Even with all of the people around, I feel that I am not there. So, I come to my basement. I am quiet sitting over there. But, again, my own attitude says that hey, this is not the end [NAME], so do something. So, I start, I told you I just need water and my colors and my paintbrush and my canvas. I am done with my life; I can do that for years and years. So, I tried to relate myself for everything. And I tried to read and relate, write. So, but still, somewhere in the back of my mind or my heart it says that, hey, you could have done more. Sorry, I want to go with my daughter out to do something, but I cannot. Can I? No. So, there is that sense of, I'm not getting that word. A sense of what? Discomfort? No discomfort is not the right word. A sense of loss, I think so, of my own self.  

Please understand what MS is. Please understand. It is important for family and friends to read and understand what MS is. It is not, it is just another disease. Don't take it as a never-ending, the end-of-life disease.

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I would have gone into a black hole if people surrounding me never understood the pain I was going through or the trauma I was going through. So, people need to understand that it isn't, I'm not able to walk because I am having pain in my leg. I'm not able to walk because I don't know how to walk. So, making them understand, people who are close to you, understanding is a very important thing.