Sense of Self and MS

You know, I was forced into this life of instability. One minute you're fine. The next minute you know you are just-- you've got all kinds of issues going on. And you know, it’s-- it’s like I look-- I look around, and it’s-- you know, I hate my life. I hate what it's become. I mean, I'm-- I'm happy for certain things you know. I'm very grateful for my daughter. And I'm grateful for you know, [NAME], my boyfriend. But the rest of it, I pretty much hate. So I kind of went from being you know, happy and carefree, I guess, to this person that is just miserable, because everything was taken away. Everything that-- everything that I had worked so hard for and/or my husband had worked so hard for, and like people just walked in and took it all away from us. 

INTERVIEWER: Mhm. Yeah, it's really a lot all at once, sounds like. It was so many-- 

Yeah. It's not like you know, it was a gradual thing that was just-- it was kind of like, with the diagnosis, it was in a 2 and 1/2, 3 year period, we went from the back surgery on the spinal cord to the MS diagnosis to the brain aneurysm, the brain aneurysm surgeries. It's like, are you kidding? You know, and then again, it was like you know, then again within the span of like a year, year and a half, it was like, the loss of my husband, the loss of my career, the loss of my you know, my being independent.  

But I think not being able to work-- going back to that-- that affected it a lot. Because until then I didn't realize that we spend the whole first part of our life being people-- the first thing they say is, “What are you going to be when you grow up?” Or you're in school and you're working towards being whatever. And college you're focused on attaining this whatever great job. And then take that away you almost feel like nothing. When people ask what do you do, and in your head you're like, well, I guess do nothing. That feels awful. And just as a society, a lot of who we are is wrapped up in what our occupation is. So, I had to do a lot of realizing that that's just one part of you. And it doesn't mean that you're not worth a ton just because you don't have that aspect of yourself anymore. But yeah, so that was hard. And as you can see, I still get sad about it. But it's not nearly as bad as it was initially. Just feeling like I don't know-- a lot of it is in our world they don't make room for people to not have jobs. Even when you're just a mom at home, you have to add I'm a mom with kids at home and I do this and that. And I wish I could tell-- warn everyone, that hey, hey, hey, make sure you're realizing that you have other awesome things to offer outside of working or being whatever you are. It's not you. You're not that thing. You're a separate being with special things as well. But yeah, no one's really listening.

INTERVIEWER: So, some people, when we talk to them, they talk about experiences of depression and other sort of mental health effects of having MS and that diagnosis. Can you talk about your experiences with that?  

Yeah, I go through bouts of it. I mean, it's not where it gets really deep, but periods of sadness all of a sudden. I'll suddenly feel sad and not know exactly why. There are times where I feel completely empty inside. And then there's times where, yeah, I do get depressed. I get that way when I'm with friends that are talking about trips that they're going to go on, because that's one thing I've always loved to do. And it was one of the things that I was looking forward to when I retired was to travel more and also to do a lot more hiking and a lot more activities. And sometimes I feel like that was ripped right out from underneath me, because I didn't even get to retire to even do a year of that. So, it can get me down. And I'll get together with friends, and they're talking about this trip or that trip that they're going to go on, particularly hiking trips. And it just kind of gets to me, because I just think, oh, I want to go, but knowing I can't, because I'd never be able to do what they're planning on doing. So yeah, I get depressed in that sense. But sometimes I just suddenly get sad. And I don't know the reasoning for it. And I just kind of chalk it up to, well, it must be the MS. 

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.  

INTERVIEWER: So how has having MS affected how you view yourself as a person?  
It's up and down. I used to be disappointed. And I still mourn for that loss of career. And I got over the driving thing. I had to stop driving when I was 29-- no, 39. And I was OK with it because I knew I was a danger to other people. But at 34 my doctor took my driver's license away, and I just threw such a fit. But five years later, I made the decision myself to stop because I knew I was a danger. I have to admit my limitations, and I have to stick to those because there's a price to pay. It's not my fault I have MS. So, I just have to roll with the punches. When it's a bad day, I have to just let it be a bad day. It's not my fault, I didn't do this. None of us ask for MS. There's nothing we did to get MS.  

And as time has passed, I think I've kind of accepted it more, and I think it's become a thing in my tool-belt, especially as a medical professional, to have this perspective of what it feels like to be on the other side of the patient room being told the difficult diagnosis and knowing exactly what it feels like to receive it, and it's kind of given me this perspective that I didn't previously have. But again, it's never that simple, and I think, even in the regular day now, there are times where it feels like a big burden to have this diagnosis and times where it feels like this is something unique about me that I now have, and it sets me apart.  

Even when I-- I smiled at myself when I wrote an email to my doctor recently. I did not call myself that, I'm such-and-such patient, but I said, and such and such student. Seriously, because I somehow, I still-- and that's when I-- it's kind of upsetting when people look at me as a MS person and I still see myself as a-- healthy person, almost. Not healthy, but completely adequate person. Maybe that's not it. I see myself as a-- as the person I was before. So as someone who can make my own decisions, and someone who expects respect as I had before, and someone who is successful and could do things even more than other people could or wanted to. So I just have this pride still, yeah, that I can't abandon.

INTERVIEWER: So, related to that, how do you think that MS has changed how you think of yourself and view yourself as a person, like your sense of self?

I don’t really think it has changed very much. In fact, in some ways, I think I feel that I’m stronger than I felt I was before because it’s like, okay, I’ve been given this, I always call it the disease that sucks, but I’ve been given this to deal with, and I have been resilient enough to keep doing things. And I am often able, I’m, a lot of times will tell somebody what my problem is. I will say, I have MS, because I think it’s important that people know you can have a disease, and you can still do things. And you can do it in spite of that.  You might not do it as well, as fast, the way you would like to, but you can still do it, and you can be strong enough to still do it. And I mean not strong, physically strong, but it’s the resilience. In that way, I think it’s made me think I am a stronger person than I thought I was. 

I don't know if it's just the way my personality is but I don't know that that has changed, has made me anything different. I sort of just take things as they come, and I cope as I go along. And I think that doesn't seem to be like I've gotten overly religious because I have MS or something. I don’t-- I don't see it that way. I don't see my disease as going to overtake me or running my life. I know that it runs my life in some aspects, but I'm going to continue to do everything I want to do as much as I can within my reasons. And since I know my boundaries, then I'm going to just keep doing it.

I don't really know if it impacts my life that much. I feel like I think about it all the time. I try not to, but it's very hard. I feel like it's definitely become a piece of me. I work very hard to make sure that MS doesn't define me, but it's as much a piece of me as being a wife and a daughter. But I try not to let it really impact my life. I think I'm still the same person I was before. It's funny. Now that I know I've had MS for six years-- I think I got it in grad school-- so it's nice to know that, when I look at everything I've done in my career, I did all of that with MS, like everything, like meeting my husband, getting married. We didn't know it, but I did all of that with MS, and it's just helpful to at least think about it that way, that I was able to accomplish all these things with MS. So hopefully, I can continue on that trajectory as well and not letting it stop me.  

So, it's like little things don't throw me into a cycle of, you know, a rabbit hole that then you’re just like, can't get out. I think those times when I was really angry at the MS group; that was really unfair of me to blame them, they had nothing to do with it. Had nothing to do with my, my emotional state of not wanting to be like them. They were all older, I mean, like I said, I was the youngest one working. Everyone was older, retired, or on disability, they had walkers, they had canes, even the ones that didn't. Didn't look good, you know, and I didn't identify with them. And I know that's really bad what I said, I know that, and I'm OK with that. I mean, it's just an image. It's definitely not OK that I felt that way. Because I didn't look at them as people. I looked at them of-- you know, they're super, not super, but they're exterior and, you know. They were overweight or they were this, or they were slouching, I mean, just like, really bad approach. And to me, that was MS and I wasn't like that and, therefore, I hated, hated myself for having it because I then would identify with them. Later on life changes and I accepted, and it comes in various forms. But, definitely having MS, not feeling that I guess, feeling sorry for myself, which is stupid, because you shouldn't feel-- everybody, you know, there's so many people that go through so much more than me. And other people that this is pretty good life right now.

So the idea that it could have some effect on the way that people who know me best would perceive me or how they would receive me or even the use, you know, that I would be observed or that I could be seen to have or not have, by virtue of having this disease, that those kinds of conversations in my personal life have come out of having multiple sclerosis. And so, it’s, you know, been a really challenging time not to hold on to my own sense of worth. I know that that is, that all of our sense of worth is written in stone if you will, but the level of doubt that you get about your inherent worth from the people that you think don’t have any questions about it. You know, for me, over the course of these, just these few, last few days, it’s been a really challenging time with respect to that. But this multiple sclerosis, which has been with me since I was 28, still, well, is actually showing up in a way that’s erasing aspects of who I thought that I was, or at least maybe revealing the truth of who I became once I sat down in the wheelchair, you know, who I am inside, who I kind of talk to myself as and who the world sees me as. It’s just another label.  
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But then at the same time, being expected to accept that I’m not, I’m no longer have value in the world. It’s just emotionally, for me, the sense that I could just be thrown away as a human being. I, you know, maybe I’m some kind of poster for some disabled rights or something. I saw it somewhere. But feeling like I have that little worth, this is the first time that I’ve emotionally been there, you know, where you just really are, it’s just I didn’t, I had it made clear to me that my worth as a human being is simply not-- because my body is broken. It would be like, you know, when somebody is physically disabled and they can’t eat a sandwich because they don’t have use of their arms, holding them morally responsible for that. I, you know, being subject to that by the people who know me best at this time in my life has been really, it’s been hard, emotionally. I did not know that you could do that.  

INTERVIEWER: It does, yeah. So it certainly sounds like people perceive you as a strong advocate and positive person. And then, wondering kind of what those pieces mean to you or how you see those in terms of your own sense of yourself.  
I mean-- it kind of-- it confirms a lot of the strengths that I always knew that I had but I kind of resisted because I thought [AUDIO OUT]. So you know, when I talk about strength, I'm talking about stuff that's, like-- so you can take a real-- like tests to figure out what your strengths are. And I used to have a [AUDIO OUT] for-- what's the big survey company in DC or near DC, the one you always hear about? Anyway, he had us all take the Clifton Strengths finder, which he helped put together. So I had taken that, and my strengths were not what my peers were, and that was kind of embarrassing to me because I wanted my strengths to be more strictly research and learning related. I just figured I should-- that's the kind of person I am now. I want to be identified as this person. And it wasn't. It was-- it was my strengths were a lot different, but they really fit well with the whole model of this MS-advocacy thing because I-- I my strengths are harmonizing.