Multiple Sclerosis

Raven

Age at interview: 52
Age at diagnosis: 28
Outline: After Raven was diagnosed with MS, she spent much of her life in denial of her diagnosis. She uses a wheelchair and has limited use of her hands. Raven is currently attempting to connect with assistance resources for her MS.  
Background: Raven lives in a Surburban area on the East Coast and previously worked as a case manager. She has one daughter. Raven identifies as a Black heterosexual female.

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Raven was in denial and kept MS out of her life for many years after she was diagnosed: “I have not really thought of my having multiple sclerosis in the way that was [um] allowed for it to be present in my life [uh] on a daily basis, to my great detriment.” Despite becoming more symptomatic as she moved from relapse-remitting to primary progressive MS, she continued to try to “create a life around the fiction that I did not have MS.”  

Raven first realized she wasn’t able to walk and needed a wheelchair while out at a store: “I became a disabled person. In that moment, I was really aware that I have this other label that I just didn’t know I was going to have.” She immediately noticed that she was treated differently when in the wheelchair, with people looking past her as if she was invisible. For Raven, MS “buried me alive in a real sense, physically, without question, [um] mentally, in the sense that, you know, denial is not a healthy response to a change in one’s life.” Raven hasn’t had any treatment since she was diagnosed with MS. Though she did some research on medications initially, “none of them convinced (her) that... the difficulties with the side effects weren’t worse or at least as bad as what it was, (she) was dealing with.” 

Raven feels “trapped in (her) own body”, since her physical decline has become faster than it was at first. Another area of struggle is the process of separating from her husband, after conflicts around how he viewed and responded to her MS. Raven is now on her own and trying to connect with a medical supply company and other resources that might be available through Medicare.   

In the future Raven hopes to speak with audiences about topics she is passionate about, as her “mind is completely alive” and she is embracing and excited about life. Raven’s message for other people who have MS is, “when you hear that, that you have multiple sclerosis, know that playtime is over and that life is in session, and you’ve been given a gift in the sense you, in the sense of you have the opportunity now to do as much as you can possibly do for as long as you can do it, to keep yourself in good health.  So do your part. Do your part.

 

Raven experienced denial when she was diagnosed.

Raven experienced denial when she was diagnosed.

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I heard something that I didn’t want to hear and failed some basic human psychological tests and then just went into immediate denial. And in doing that, you do everything but take life seriously and heed the call in that moment. There is a call for you to benefit from this tragic announcement. You know, you have multiple sclerosis, and maybe you won’t be able to do anything about that, but you can do something about what you do about having multiple sclerosis. And that’s where the power is. The power to do something is the power to, at least in my experience, would have been the power to have a better life, you know, as opposed to turning my eyes away from what was mine to deal with because it was ugly. I would have seen that it is not ugly. It is. It is. Because it is, what is the best way to deal with it? And dealing with it, doing things about it would have been infinitely, would have benefitted me or anybody else who gets tragic information, infinitely more than saying, than just being in denial about it.  

 

Raven opted not to try any disease modifying therapy.

Raven opted not to try any disease modifying therapy.

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But those kinds of moments where, you know, essentially, the rug is pulled out from underneath, and I had no choice but to face the reality that this MS is really here-- my medical. So it was around that time, I guess, that I saw maybe a neurologist. And I was looking for somebody at that time who could help me with alternative treatment. I hadn’t heard anything that made me particularly hopeful about taking the routes of treatment that were present at that time. There was a different generation of drugs and treatments, and none of them convinced me that the side effects of the, that the difficulties with the side effects weren’t worse or at least as bad as what it was I was dealing with. 

 

Raven describes the discomfort that other people felt when interacting with her.

Raven describes the discomfort that other people felt when interacting with her.

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There’s a kind of invisibility around MS that I, you know, experienced immediately or I observed immediately the first time I was not able to walk in a public space, at a Home Depot, and one of the first times that I realized that I was not going to be able to walk the expanse of a store like that, and I needed one of the kind of carts that they have there handy for people who have disabilities. And of course, like everybody else, I’ve seen them there, not paid any attention to them until I needed one and essentially became a disabled person. In that moment, I was really aware that I have this other label that I just didn’t know I was going to have, kind of slap in my forehead, you know, my body was really hurting at that point, and I just knew that I wasn’t going to be able to walk. And so, I sat in one of these carts that you can sit in, and I thought that, and I rode up to somebody as I would generally have walked up to them and ask them something about something, where ask them about where something was. And the person looked almost pained, you know, to have to look at me. And so, they literally just looked over my head and spoke to the person who was standing behind me, maybe because, over one of my shoulders, as if I had really said nothing. It was obvious, you know, that I had, and it was also obvious that the person wasn’t really consciously choosing to be cruel in that moment, but just being, just the encounter, the unexpected encounter, you know, with this person in this wheelchair. And also, I was younger at that time, and that was also, I think, disconcerting or disarming for people, to see a woman in her 30s, 40s, you know, sitting in a wheelchair and not feeling like they can ask about why. 

 

Raven struggles to reconcile how she sees herself with how others see her

Raven struggles to reconcile how she sees herself with how others see her

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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.  

 

 

Raven decided that she needed to embrace the new path that MS created.

Raven decided that she needed to embrace the new path that MS created.

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I guess for whatever it’s worth, I would not embrace it as this tragic moment where my life was over. Again, I would embrace it as a step towards something, direction that I didn’t think I would be taking, some path that I did not think that was mine. And let’s then bend this path toward me, as opposed to trying to stay on the path that I was on and keeping up and trying to keep up with a life that is no longer available to me. That was the life that I had considered before I knew that I had multiple sclerosis. Now it’s time for me to embrace a new path, a new life that's shaped by this new truth, because truth is what it is. 

 

Raven recommends doing as much as you can for as long as you can. 

Raven recommends doing as much as you can for as long as you can. 

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What I would advise people who get, have MS is, I would speak to the people that I wish I could’ve spoken to on the day that I was diagnosed. I would say to them, when you hear that, that you have multiple sclerosis, know that playtime is over and that life is in session, and you’ve been given a gift in the sense of you have the opportunity now to do as much as you can possibly do for as long as you can do it, to keep yourself in good health. So do your part. Do your part. And so, everything that you put in your body, in terms of food and exercise, and most importantly, the things that you allow yourself to see and to hear and to taste and touch, you know, have to be good. You have to make such a priority out of, at this point, of having a good life, because it has been, for me, it was just on that day, I was being told that I was not-- I was only going to be able to use this body for so long, and I was being challenged to do my part, to make my time with my body the best time that I could have with it for as long as I could have it, and I did the opposite. 

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