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[Hangout Junkie] Welcome to "Inspiring People"

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Today, we have Chloe Cohen, who is going to tell us an inspiring story

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of her struggle and how she has been dealing with Multiple Sclerosis for many years, now.

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Chloe, you are on.

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[Chloe Cohen] Hi, everybody. My name is Chloe

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and I've been living with Multiple Sclerosis for about 14 years, now.

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I was 20 years old when I was diagnosed and for me it was very quick - it was not -

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Most people generally have symptoms and then slowly, more shit starts happening,

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and then they are diagnosed.

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But for me, I hit my head real hard, and that head trauma caused symptoms pretty much instantly. Errh..

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[HJ] Oh, it's not genetic?

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[Cohen] They don't know. They still don't know if it's genetic, environmental or anything.

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So they're still trying to figure out that out.

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But - Yeah, nobody in my family has it, but like, one of the girls that I know with MS, her sister has it,

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and then, this other girl, her father has it.

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So I don't know. I don't know if it's genetic or not. I don't think they know, but I will say this:

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when I was diagnosed 14 years ago, there were 3 drugs available to slow down the progression of the disease.

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Now, I think I should start by explaining what MS is.

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And that is a neurological disease that affects the central nervous system,

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with a wide, wide, wide range of symptoms, from numbness and tingling

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to blindness in an eye, to the loss o use of limbs, to chronic pain.

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And every single person with the illness is different, and how it affects them.

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And there is no two people who deal with it in exactly the same way.

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But before these drugs came out, there was no way to slow the progression of the illness.

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So that's why there is such an older generation of people with MS in wheelchairs,

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because they didn't have the benefits of these drugs that slow the progression,

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because it is constantly flowing, you never know what's going to happen today, you know,

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I've been now in remission for four years, and it's like a new life,

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because for 9 years of my life, it was this up and down thing of what's going to happen tomorrow,

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what - is this symptom not going to be here tomorrow, or what's going to happen tomorrow?

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So I very much learned how to [coughs] - excuse me - live win the moment.

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not worry about the future as much.

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But it's only because I went through all that, that brought me to this point.

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But I'm definitely a lucky one. I was very disabled initially.

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When I hit my head, it basically just jarred everything loose that was loose .

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I probably had, you know, when I look back at my childhood before I even had MS,

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I can recall things that happened during that, you know, that were like,

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my feet would go numb in the shower in high school.

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But I didn't even consider it, because they'd come back to life, you know.

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Only until I was diagnosed with MS did I go "Huh, maybe that was connected", you know,

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But, you know, I don't know - I don't know.

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In my - in my theory, I've probably had this since I was born and it probably came up all through my life.

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But I didn't get that diagnosis untill I initially hit my head

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and had this like fast bang: I can't use my left side, it was all - I had that constant tremor,

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I had vertigo, so it was like being wasted drunk all the time,

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but you're not drunk, so you didn't get the benefit of the drunkenness [laughs],

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you just got the bad stuff.

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[HJ] Did you suffer from ithereally bad, symptoms?

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[Cohen] Luckily, it was only about, maybe, 6 months to a year, where it was really bad.

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I was lucky because, you know, as soon as they discovered that it was MS,

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and I got put on medication and really the only thing that they have, it was steroids and steroids

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will calm the inflammation or whatever that's happening.

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So, getting on am oral dose of steroids relieved my tremor relatively

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and I was on - about some other drugs, there is this drug called antivir,

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And I don't even know what the heck it is, but it was something like working out, straightening you out.

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So, I didn't have vertigo anymore. So, I give credits to the medical establishment

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for having these drugs available, but it never was quite enough.

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And I found marijuana to be one of the only things that relieved me from these constant annoyances.

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It - at least, it brought me to a more accepting place, I guess you could say,

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where it's like "OK, if I have to deal with this 24/7, then I can, you know,

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as much physically as the marijuana was doing, the cannabis was doing,

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of calming my tremors and taking away my disconfort.

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It was also bringing psychological relief that "You know what? I can handle this and deal with this".

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And this is my life, and I'll move - I'll not worry about the future so much.

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But my story really is important because, you know, within 20 minutes, my life slipped .

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I had hit my head and I couldn't use my left side, and I was a cellist.

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This is what I was going to college for. I was going to study music,

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I was going to be in, like a rock band, rock n' roll on the cello, you know?

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That's what I thought. But then what's, you know. Yeah, I had to reramp my life.

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My life and, you know, and I was very angry for a very long time,

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because I think anyone who've got their passion worked from (?) that quickly (7:07)

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Anybody who ha any kind of instant loss knows, appreciates every little thing a little bit more,

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because you know what it's like to lose it.

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And i think it took me a lot of, a lot of therapy and a lot of, like,

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awesome conversations with people who get it, to be able to be at this point.

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But I did start a support group here, eight years ago, for younger people with MS,

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because all the support groups were full of old, bitter, angry people

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because they never got the benefit of the medication until, maybe, you know,15 years into their MS game

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and it has done - it has taken its toll already, so there is always so much -

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there is no repair of what 's been taken away.

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You know, they don't, they haven't - they're working on it, how to, you know,

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- figuring out ways to repair that myeline that's torn.

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Because when you have myeline - I left this major point out - you've lesions on your brain.

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So those lesions then form symptoms in whatever region of the brain they^re covering.

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Yet - but the disease is the demyelinization of your nerves,

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and that's what causes them to be set on i(?) mproperly, and things.

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So when you have a mass of nerves, no myeline now on your nerves (? - 8:43)

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and the messages get screwed up.

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But what I have learned after not walking, to be where I am at now,

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there is no way I could have done that without the concepts of neuroplasticity.

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And I think that's so important, like, our brains are so powerful and we are capable of anything,

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anything if you put your mind to it, and what I have proved to myself as well as,

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I guess, if the medical establishment would have studied me [laughs]

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But there is no study of me, you know,

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though what I have done is really carve new pathways in my brain.

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So now I'm using my left hand and it's never going to be the same,

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I'm never going to be able to play the cello like I did but at the same time, I can use it now.

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I mean, in all these 9 years, I didn't use it, and it's only through this, like, persistence I have,

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of exercising, pushing myself. And I think it helps bcause I was an athlete before I got MS.

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So I had this like, competitive "I'm hard-ass" kind of thing in me (laughs).

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Because I played soccer for many years, and we were really good, you know, our team was good,

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and so I have that - that hard-ass attitude of just like keep pushing, keep pushing.

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and the hard part with MS is, like, your energy is greatly depleted.

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And I know for me, an a lot of people, when they are first diagnosed with the illness,

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they can't do this stuff the same way they did it before,

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they have to figure out how to adapt to this new world of not being able to do things yourself.

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And when you are as stubborn and hard-ass that I was, there was no way,

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and how I was going to have to ask someone to change my light bulb,

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but it was at a point where I had that, so the light bulb would not get changed

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if I didn't ask someone to do it for me.

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And what I also had to realize is that generally, people like helping other people.

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It gives them a sense of, self-sense of worth, you know?

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And where I looked at it like, it's a downfall for me that I can't do myself, do it myself,

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what they're getting from it is like, "We like helping people, I like it, it makes me feel better about myself".

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And I know, you know, when I can help people with stuff that they don't know anything about,

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whether being DJing music technology, or MS for that matter, you know,

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it feels good to know that, like, I have something to give these people

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and so, like, for many years, I beat myself up being like, "Well, I can't do it myself, grrrr"

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But that attitude really got in the way of my growth, you know, I think you really have to learn that.

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I don't even know, I think I am lucky that I was able to adapt successfully.

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You know, I've reached a point now that the MS isn't ............. life

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which it was, for many, many years, ten years.

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And it was like that was every, everything I did, it was about MS.

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It was about having - First of all, graduating college: I mean I had to -

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I couldn't be the music major, because I couldn't even play anymore.

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So I changed into - speech communications major

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because I wanted to learn how to affect people effectively (laughs) with my words,

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and let them hear me, and not sign off.

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So, I thought it was important to learn the art of communication

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and how to communicate effectively, to affect people.

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And I think I did that really well, and I know I'm doing it really well,

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because my story is special and unique in the sense that it happened so quickly.

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But if you - if there's a will, there's a way. I mean, the fact that I couldn't walk and I went skiing

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and now I'm riding an elliptical machine. what the hell!

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Excuse me, but like, it's .............. it's just mind-blowing to me (13:12)

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Everyday, it's a mind-blowing experience like, brushing my teeth in the morning.

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I could never do that with two hands, and now I can.

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And so every morning, when I brush my teeth, I'm like, "Hell yeah, I'm doing this",

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and that' just a little thing, but it's like, I appreciate that stuff.

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Tie my shoes? Couldn't tie them for a good nine years.

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So now, I tie my shoes and I'm proud to tie my shoes, you know, it's appreciating those little things.

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And I wouldn't have had that perspective, I wouldn't have known this,

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I wouldn't be inline (?) this much (13:45) without the losses that I've had.

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And I really say, I thing Ram Dass said it,

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that, you know, through his strokes, this brought him closer to enlightenment.

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Because now he had a new perspective, you know,

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now he saw what it was like, you know, on the other side, or whatever.

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And I think it's been my duty to kind of let people look through a different lens for a minute

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and see, you know, look at themselves.

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In that regard, I mean, most people don't ever think about things like that happening, you know.

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But the fact is, they do and it could happen to any of us at any moment.

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Yet we are so concerned about the future, or so stuck on the past, that we're not living in the moment.

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And like, right now, I'm appreciating this moment, to be able to speak freely

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and let people know they've just got to appreciate what they have a little more.

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Because, people, you really don't know what you have until you lose it.

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And I think it's so important for people to appreciate what they have.

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And you're never going to - hopefully, you'll never have to go through that,

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of learning what it's like to lose all that stuff,

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because it's not easy, and it was only through some intense EMDR therapy

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which is eye-movement therapy, that I got peace with the fact that I can't play the cello

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like, you know, a symphony cellist anymore, you know?

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But it - that is some intense stuff., for anybody ........... trauma (15:29), it's mainly for trauma.

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But I always thought that I didn't go through war, I didn't have some horrorific incident happen to me.

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But at the same time, I went there because I was in a car accident,

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and the car accident was because of this darned tremor (laughs)

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and I thought for a brief second I could use my other hand to grab something,

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but in that brief second, my arm jerked and whoof, there went the car and we slipped in.

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I lost my two dogs in the car accident. It was very traumatic.

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But, so I was going to go, and I was like; "I'm never driving again."

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After that happened, I was like: "No: screw the car."

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So I went into this therapy, thinking I was going to work on my driving.

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But what I realized was how connected it was to having MS,

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and the trauma that I went through with my diagnosis.

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Because, you know, I was only 20 years old, my brain was not yet developped.

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So it is pretty impactful when all you know is no longer, you know?

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But I'm also very thankful because I had an amazing family to help me through it all, you know,

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that's a key piece. But this also why I started my group.

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Because I don't think that anybody needs to deal with that stuff alone.

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And fortunately now, there is, what, seven drugs available,

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First there's these three that were available before, and those three were only injectables.

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There is no - I think now, only in the last ouple of years, I don't even now,

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I'm kind of happy to live (?) with the medication

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because my medication has worked for me the whole time and I^m really lucky.

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But I know that there's like one or two oral medications out now,

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all the rest are injectables, and that's a big deal (laughs).

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That's probably one of the harder things, it was having to know I'd have to get poked in my butt

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every four days or whatever, and you know, for a lot of these, a lot of people,

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it's so interesting how everybody is so different with these injections.

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I have one friend that is like, adamant, like "I'm never letting people do this to me.

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This is I have to live this for myself, it's my medication".

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And then there is someone like me that's like, I can't even look at the needle,

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so I need someone else to do this for me.

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And, you know, 14 years later, I still have someone else do it for me because I -

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any way to make it easier for yourself?

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If I mean I have to do injections in my butt, into muscular leg, I'm talking big needles,

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I don't want to see the needle, I don't even want to know.

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But even to this day, I don't do it myself, I have a nurse do it.

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I'm really good at it at this point, I mean, so much practice,

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and I think I have enough needles now that we are about equal on the coverage.

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[HJ] Wow!

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[Cohen] But I think, you know, you know, I'm going to promote myself and I'm a DJ.

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And I do - I did transform that classical skill of music into my turntablism.

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It's vastly different. It's a different sound.

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And it was a huge loss to me, to not be able to create my own sound, and even turn, you know,

205
00:19:17,108 --> 00:19:20,764
being on turntables, it's someone else's music that I'm playing.

206
00:19:20,764 --> 00:19:28,195
But what I've learned is that nobody else can make it sound the way I'm making it sound.

207
00:19:28,195 --> 00:19:35,631
Because it's the art of the mixer, and it's really about hearing, and the harmony.

208
00:19:35,631 --> 00:19:44,413
This tattoo right here represents harmony because - and I have one on the back of my neck,

209
00:19:44,413 --> 00:19:52,402
that was initially made out of two base clefs in a - infinity symbol, right?

210
00:19:52,402 --> 00:19:57,817
But the tatto artist was not a musician and he put the dots on the wrong side,

211
00:19:57,817 --> 00:20:02,931
and I was like, Oh, can we just like... So he just made it in the infinity symbol.

212
00:20:02,931 --> 00:20:08,234
But it still has the same meaning to me, and that is that the music is never lost in me,

213
00:20:08,234 --> 00:20:11,410
no matter if I can play that or not.

214
00:20:11,410 --> 00:20:14,898
I will forever hear it, I will forever feel it.

215
00:20:14,898 --> 00:20:20,213
And that's what I put into my turntablism, you know?

216
00:20:20,213 --> 00:20:25,290
I'm not a big scratcher. Oh, I must admit, the other day, I was fucking around

217
00:20:25,290 --> 00:20:31,210
and I scratched some of this Saudi Arabian music, and made it House: it's pretty hot.

218
00:20:31,218 --> 00:20:34,898
Well, you know, that was just like, I don't know if I can do that again,

219
00:20:34,898 --> 00:20:45,431
it was kind of in the moment, but I am able to let out my creativity through the turntables now,

220
00:20:45,431 --> 00:20:48,352
and it took me a long time to get to this point,

221
00:20:48,352 --> 00:20:54,033
but now I know that the sounds I'm creating whether - and it's all other people's music,

222
00:20:54,033 --> 00:20:59,217
but the way I'm manipulating their music, it's an art within itself.

223
00:20:59,217 --> 00:21:07,695
And I think that there's plenty of DJs these days that just use a stupid program

224
00:21:07,695 --> 00:21:11,887
that does it all for them, and they just click in stuff,

225
00:21:12,733 --> 00:21:19,597
but they've lost the art form of what it really is, and i think if you go back to, like

226
00:21:20,505 --> 00:21:28,862
the original people who were DJs, they were - they were musicians

227
00:21:28,862 --> 00:21:31,271
and they were creating their own sound,

228
00:21:31,271 --> 00:21:35,798
and unfortunately, technology has kind of moved faster,

229
00:21:35,798 --> 00:21:40,765
and so all these kids are trying to be DJs, and it's kind of funny to me,

230
00:21:40,765 --> 00:21:43,198
because they don't even know how to match a beat.

231
00:21:43,198 --> 00:21:51,431
But you know, to each their own, and I do not judge (laughs) Bullshit, I totally judge.

232
00:21:51,431 --> 00:21:57,087
I am - I would be the first to say that. It's like if you don't know how to match a beat,

233
00:21:57,087 --> 00:22:01,869
why are you even trying? But, you know, that's a whole nutter (other?) show.

234
00:22:01,869 --> 00:22:03,633
[They laugh]

235
00:22:03,633 --> 00:22:12,395
[Cohen] But I think that the message I want to leave with, I guess you could say,

236
00:22:12,395 --> 00:22:17,677
would be, you know, "Stay positive." That's the only way I got through all this stuff with -

237
00:22:17,677 --> 00:22:21,221
by staying positive, then I kept pushing, you know, it was like:

238
00:22:23,790 --> 00:22:28,029
"Bring it on!" - now I made a poin, might (?) bring it on, you know?

239
00:22:28,029 --> 00:22:31,798
What else are you going to do with me? You know, I don't really -

240
00:22:31,798 --> 00:22:36,229
you know, I can beat it, whatever it is, you know, and yes, I may have this illness

241
00:22:36,229 --> 00:22:41,191
for the rest of my life, but I'm not going to let it run me, and I'm not going to let it control me,

242
00:22:41,191 --> 00:22:48,313
but you know, at the same time, I say that, and there's definitely a lot of restrictions it puts on you.

243
00:22:48,313 --> 00:22:53,931
I mean, when you've chronic fatigue and you're sleeping 18 hours a day, you can-

244
00:22:53,931 --> 00:22:59,831
it's going to be hard not only to be able to hold on a job, more or less like "relationships",

245
00:22:59,831 --> 00:23:06,964
that's whole other ball of game. So it's like, you really have to learn how to adapt.

246
00:23:06,964 --> 00:23:11,195
And a lot of it is adapting to other people.

247
00:23:11,195 --> 00:23:17,492
Because, especially like now, even now, like, I don't look like I've an illness

248
00:23:17,492 --> 00:23:19,869
or anything wrong wrong with me at all.

249
00:23:19,869 --> 00:23:25,613
And then, I have a drink, and I look like I'm wasted.

250
00:23:25,613 --> 00:23:32,698
And I've been coralled (?) out of bars, even, a few months ago I got caught off at a bar,

251
00:23:32,698 --> 00:23:37,605
because the bartender saw me stumbling, and I was like: "But I have MS!"

252
00:23:37,605 --> 00:23:42,748
And it's like, I don't have it tattoed - I wear a bracelet now that says "I've MS",

253
00:23:42,748 --> 00:23:48,832
because I carried a card that I have MS, but this is much more like, bang!

254
00:23:48,832 --> 00:23:52,469
you don't have to, like, struggle, getting it out of your wallet or whatever.

255
00:23:52,469 --> 00:23:58,271
But, you know, it's all the invisible symptoms that nobody sees,

256
00:23:58,271 --> 00:24:07,146
and that's what I will make visible is that with this illness, you can't see the pain they're in,

257
00:24:07,146 --> 00:24:14,287
the struggles they're in, feeling like they have a tight belt around their waist, you know, 24/7,

258
00:24:14,287 --> 00:24:20,298
or whatever - you know, for me it was shaky arms, so you know, I - there was always tricks,

259
00:24:20,298 --> 00:24:22,655
there were times that I just sat on my arm.

260
00:24:23,255 --> 00:24:26,621
Because whenever I'd bring it out, it was like flopping in the wind.

261
00:24:26,621 --> 00:24:30,229
So it's - you learn tricks (laughs).

262
00:24:30,229 --> 00:24:37,546
But I think that a lot of people - it's - it's really hard for a lot of people,

263
00:24:37,546 --> 00:24:43,364
because they don't want to accept it, you know, and what is it?

264
00:24:43,364 --> 00:24:46,448
The 5 stages - were you a psych major?

265
00:24:46,448 --> 00:24:47,518
[HJ] Yeah.

266
00:24:47,518 --> 00:24:56,386
[Cohen] OK: spit them out: denial, anger, I don't know. What are those? All those stages you go through.

267
00:24:56,386 --> 00:25:06,095
You go through that stuff with MS. It's like, OK, because like that first year, I drank so much boo-

268
00:25:06,095 --> 00:25:11,629
so many beers because it was so much easier to say: "No, I'm just drunk", instead of

269
00:25:11,629 --> 00:25:15,845
"I've got this illness that's making me all uncoordinated".

270
00:25:15,845 --> 00:25:24,825
Alcohol was awesome for making me deny the fact that this stuff was going on - to a degree, to a degree.

271
00:25:24,825 --> 00:25:29,644
And then I was really angry because I was on a college campus,

272
00:25:29,644 --> 00:25:33,329
and everybody was so young and stupid and hadn't -

273
00:25:33,329 --> 00:25:35,548
.................... angry.

274
00:25:35,548 --> 00:25:37,998
I was like, "Everybody is stupid" [laughs].

275
00:25:37,998 --> 00:25:42,195
But then, after i got over the anger, I, you know, became accepting of it

276
00:25:42,195 --> 00:25:48,399
and I knew that the anger wasn't getting me anywhere, any of these -

277
00:25:48,399 --> 00:25:56,580
or the sadness for that matter, you know, or any of these emotions, wasn't taking me to a place of peace with it..

278
00:25:56,580 --> 00:26:07,278
And I really think that because of that EMDR therapy, I became at peace with it all,

279
00:26:07,278 --> 00:26:10,864
and it still sucks. I'm never going to say it doesn't suck,

280
00:26:10,864 --> 00:26:16,125
but you know, fortunately for me, the only thing that I have to deal with is injections.

281
00:26:16,125 --> 00:26:22,610
You know, I don't have - my tremor is calm enough now, all my symptoms are pretty regulated,

282
00:26:22,610 --> 00:26:28,043
I - So it's like a new lease on life, I feel. And so -

283
00:26:28,043 --> 00:26:29,620
[HJ] .... of MS?

284
00:26:29,620 --> 00:26:30,520
[Cohen] What?

285
00:26:30,520 --> 00:26:32,713
[HJ] Are there different types of MS?

286
00:26:32,713 --> 00:26:38,221
[Cohen] Yes. Thank you for asking. There are, and that's what a lot of people don't know.

287
00:26:38,221 --> 00:26:43,862
And the majority of people with MS have relapsing or remitting MS,

288
00:26:43,862 --> 00:26:48,098
which is one that comes and goes as it pleases.

289
00:26:48,098 --> 00:26:57,471
But these drugs prevent the quicker going downs and kind of trick the brain into the -

290
00:26:57,471 --> 00:27:00,415
thinking the stuff's there that isn't.

291
00:27:00,415 --> 00:27:08,513
But then there is the progressive and secondary progressive, which are the really debilitating kind -

292
00:27:08,513 --> 00:27:13,969
ah no (?), the kinds with the people in the wheelchairs, and the people that (then ?) get bedridden.

293
00:27:15,154 --> 00:27:17,979
And unfortunately, there is no medication for them.

294
00:27:17,979 --> 00:27:21,113
So for - this is my biggest concern now,

295
00:27:21,113 --> 00:27:26,867
because they've got all of us relapsing or remitting people pretty much under control,

296
00:27:26,867 --> 00:27:32,264
but it's these people that just keep getting worse and worse and worse

297
00:27:32,264 --> 00:27:39,459
and, you know, that's the hardest part of MS to watch or even talk about.

298
00:27:39,459 --> 00:27:47,215
Because, like, when I started this support group 8 years ago,

299
00:27:47,215 --> 00:27:50,977
there was a few people in there with progressive MS,

300
00:27:50,977 --> 00:27:55,113
and you know, they started coming to the meetings and they were OK,

301
00:27:55,113 --> 00:27:59,648
they might have had a little tremor, but we all had tremors at that point.

302
00:27:59,648 --> 00:28:03,856
So it was like, "Yeah, I -". But we could relate to each other,

303
00:28:03,856 --> 00:28:12,316
and one of these guys I got very close with, and he had progressive. Oh, he still has progressive.

304
00:28:12,316 --> 00:28:14,564
I should not speak of him in that way.

305
00:28:14,564 --> 00:28:28,482
But just the quick downfall of his system, and how it just fell apart, you know, like,

306
00:28:29,544 --> 00:28:32,218
so he comes to this meeting, and maybe he's got the old tremor,

307
00:28:32,218 --> 00:28:38,479
the next month he comes and he's got optic neuritis in one eye, one eye is just looking out that way,

308
00:28:38,479 --> 00:28:44,197
you know, and then it's like, bad talk (?) is another symptom.

309
00:28:44,197 --> 00:28:49,531
Then the next month later, he's not even walking, you know, he's using canes.

310
00:28:49,531 --> 00:28:53,313
And then the month after that, he's in a wheelchair.

311
00:28:53,313 --> 00:28:59,162
And now this guy is totally bedridden, to where his mom has to feed him and bathe him,

312
00:28:59,162 --> 00:29:04,112
and his independence has been taken, and it's really hard.

313
00:29:04,112 --> 00:29:10,821
Because then unlike - well how did I get so lucky? Why am I so lucky that I could get better?

314
00:29:10,821 --> 00:29:18,923
If I could just have given him half of my recovery or whatever, we'd both be in better places.

315
00:29:18,923 --> 00:29:26,629
But it's not how it works. But for me, that's my biggest motivation, you know,

316
00:29:26,629 --> 00:29:34,485
for all of these people with MS who really can't do it anymore, like I'm going to keep pushing harder,

317
00:29:34,485 --> 00:29:39,131
and I'm going to ride that elliptical machine, because I can, damn it.

318
00:29:39,131 --> 00:29:46,550
And you know, for me, that was such a huge thing, because that elliptical machine and I were enemies.

319
00:29:46,550 --> 00:29:55,454
We - my left and right body did not work together, that whole piece of my brain was kind of messed up,

320
00:29:55,454 --> 00:30:05,913
so an elliptical machine was the utter, the best example of the left and right brain working together

321
00:30:05,913 --> 00:30:10,113
at the same - you know, that total coordination right there. And -

322
00:30:10,113 --> 00:30:13,748
[HJ] Do you want to talk about what induced you to use the elliptical?

323
00:30:13,748 --> 00:30:15,156
[Cohen] What?

324
00:30:15,156 --> 00:30:17,464
[HJ] Do you want to talk about who pushed you to do the elliptical?

325
00:30:17,464 --> 00:30:20,730
[Cohen] Oh, my trainer! God bless my trainer!

326
00:30:20,730 --> 00:30:24,746
Because I met him 5 years ago,

327
00:30:24,746 --> 00:30:25,631
[HJ] Ah!

328
00:30:25,631 --> 00:30:35,290
[Cohen] and I wasn't using my left arm. I could walk but I had very little coordination and balance.

329
00:30:35,290 --> 00:30:40,913
So I always thought I was kind of drunk, which is fun, in public.

330
00:30:40,913 --> 00:30:49,446
But he understood right away that this was a neurological disease and that it wasn't about my muscles,

331
00:30:49,446 --> 00:30:53,775
because the trainer I had before him was like a total jerk, and he was:

332
00:30:53,775 --> 00:30:58,946
"I'm going to whip you into shape" and like - he definitely put some muscle on me

333
00:30:58,946 --> 00:31:03,195
but there was no - no pathways being carved [laughs].

334
00:31:03,195 --> 00:31:09,941
So when I got this .... - this trainer, he got it and he was just challenging me

335
00:31:09,941 --> 00:31:19,664
with motions I hadn't been doing for 9 years, with, like, using my arm and bringing it out ,

336
00:31:19,664 --> 00:31:25,764
and acting as if I'm lifting my dog and putting him on a shelf over here,

337
00:31:25,764 --> 00:31:34,421
which was a motion I didn't do, but - but from doing this, repetitively, for years,

338
00:31:34,421 --> 00:31:39,964
it's like now, I'm throwing medicine balls with my left hand, you know?

339
00:31:40,010 --> 00:31:46,044
And it's only because he's kind of a - he's an awesome trainer, because he's like -

340
00:31:46,044 --> 00:31:52,885
he's fun: we have fun, that's the best piece of it, you know, he makes games out of everything,

341
00:31:52,885 --> 00:31:58,589
and I being the athlete that I was, I wanted to be like, "No, I can do it ."

342
00:31:58,589 --> 00:32:02,338
he's like, "You're done, you're done!" I'm like "No! I got to do it one more time,

343
00:32:02,338 --> 00:32:04,515
just to prove to myself I can do it".

344
00:32:04,515 --> 00:32:12,753
But - so we got this elliptical machine and I just looked at it for months,

345
00:32:12,753 --> 00:32:17,518
like it's over there, and that's there for other people.

346
00:32:17,518 --> 00:32:22,643
And then finally, one day, he's like "YOu won't even try and ride this?"

347
00:32:22,643 --> 00:32:27,279
I was like: "Errh, I don't know, you think I can?" I mean, he has been -

348
00:32:28,171 --> 00:32:36,381
he got me to this point (?) and I got on, and I was riding it, and it was the weirdest feeling in the world,

349
00:32:36,381 --> 00:32:41,477
because both my left and right were working simultaneously together,

350
00:32:41,477 --> 00:32:47,592
which never happened for not in - you know - 14 years [laughs].

351
00:32:47,621 --> 00:32:56,536
So yeah, it was pretty darned amazing. I was just like: "Holy -" I was freaking out.

352
00:32:56,536 --> 00:33:02,048
I'm surprised that I didn't start bawling in front of him. But I can - it was also awesome for him

353
00:33:02,048 --> 00:33:07,836
because he was like, "I'm doing my job and I'm good at it!" you know,

354
00:33:07,898 --> 00:33:14,123
And I have to give him credit because, you know, if I had been working out by myself all this time,

355
00:33:14,123 --> 00:33:17,031
I wouldn't have seen any of these improvements.

356
00:33:17,031 --> 00:33:22,116
But because I have this guy on my side that's like pushing me and challenging me,

357
00:33:22,116 --> 00:33:24,962
and keeping me motivated,

358
00:33:24,962 --> 00:33:30,162
that's the biggest thing, like, I've got no motivation to go to the gym, I hate the gym,

359
00:33:30,162 --> 00:33:36,925
you know, I don't mind going to look at the sexy men, but there's a lot more unattractive men then sexy

360
00:33:36,925 --> 00:33:39,749
men [they giggle], so screw that!

361
00:33:39,749 --> 00:33:46,668
But you know, it's really about me and my personal gain (? game?).

362
00:33:46,668 --> 00:33:51,795
I just feel very lucky and blessed, and I think everybody needs to kind of take -

363
00:33:51,795 --> 00:33:57,644
take a moment and appreciate all the things they have, until you lose it.

364
00:33:57,644 --> 00:34:04,829
I wish I would have known, you know. If I would have known that was going to happen to me,

365
00:34:04,829 --> 00:34:10,956
I probably would have been playing my cello every day, multiple times a day, and doing all this stuff.

366
00:34:10,956 --> 00:34:16,761
But I was just a stupid kid and I didn't realize that anything like that could ever happen.

367
00:34:17,669 --> 00:34:19,353
[HJ] Nobody knows, nobody.

368
00:34:19,353 --> 00:34:28,300
[Cohen] No, they don't, but they'd - but I - I think that I'm trying to -

369
00:34:28,300 --> 00:34:34,415
I'm trying to kind of change the face of MS a bit. I'm trying to show the positive side.

370
00:34:34,415 --> 00:34:42,659
Not all these people in wheelchairs and all negative, because that really is the older generation of MS,

371
00:34:42,659 --> 00:34:48,618
and it's not like that anymore. I mean, the support group that's still running,

372
00:34:48,618 --> 00:34:54,486
I mean there's new people coming in every months, and they are all at different levels

373
00:34:54,486 --> 00:34:56,910
in dealing with their illness.

374
00:34:56,910 --> 00:35:03,629
Some of them - there was one girl a few months ago, who hadn't even been diagnosed yet,

375
00:35:03,629 --> 00:35:09,146
but she knew it, because her father had MS and she - she knew.

376
00:35:09,669 --> 00:35:16,444
And, you know, watching her go through that whole process of getting the diagnosis, having to adapt,

377
00:35:16,444 --> 00:35:20,833
taking the injections, and being there, knowing that,

378
00:35:20,833 --> 00:35:27,272
just being able to connect with other people about it, helps so greatly,

379
00:35:27,272 --> 00:35:34,098
like even that - the guy with progressive MS, I think one of our most binding moments

380
00:35:34,098 --> 00:35:38,195
was just standing in his kitchen and he fell, and he's like:

381
00:35:38,195 --> 00:35:42,210
"Damn! Don't you hate it when the earth moves out from underneath you!"

382
00:35:42,210 --> 00:35:47,329
And I go "Oh my God! I love this guy!", like I'd experienced that too.

383
00:35:47,329 --> 00:35:53,139
But it's very rare that you're going to meet someone who has experienced that without being drunk,

384
00:35:53,139 --> 00:35:54,547
you know what I'm saying?

385
00:35:54,547 --> 00:36:02,226
And it's very - I know that guy and I are forever in each other's hearts,

386
00:36:02,241 --> 00:36:06,986
because I think we were both like the first people who had the same illness you could relate,

387
00:36:06,986 --> 00:36:12,241
and he was like a track star and all this before the MS affected him,

388
00:36:12,241 --> 00:36:21,065
So he also lost his passions but we also learned to adapt and you know,

389
00:36:21,065 --> 00:36:25,333
whether I was going to be this "rock star cellist)" or not,

390
00:36:25,333 --> 00:36:29,446
it's like, life has lead me in this direction and I can only do -

391
00:36:29,446 --> 00:36:36,410
go forward and spread the positive stuff, and that's what I'm trying to do,

392
00:36:36,410 --> 00:36:41,282
and I'm trying to affect people and let them know, "No, you're not alone.

393
00:36:41,282 --> 00:36:46,141
and there isn't a cure for this illness. So it would be nice if there was, you know.

394
00:36:46,141 --> 00:36:49,225
So help us get there and help - help"

395
00:36:50,671 --> 00:36:58,477
It's interesting because I think more and more, now, if I say I've MS, somebody will say;

396
00:36:58,477 --> 00:37:03,979
"Oh, my sister has MS - my aunt has MS". Somebody knows somebody with MS.

397
00:37:03,979 --> 00:37:11,702
And I'm glad that's the case, because people, you know, 14 years ago, they didn't even know what it was.

398
00:37:11,733 --> 00:37:19,278
And it's nice to know that people actually are getting diagnosed faster,

399
00:37:19,278 --> 00:37:31,088
which is helpful because they can get on drugs faster and avoid giant relapses, I guess.

400
00:37:31,088 --> 00:37:33,379
............ (37:33)

401
99:59:59,999 --> 99:59:59,999
[HJ] Did you have to change your diet at all?

402
99:59:59,999 --> 99:59:59,999
[Cohen] No [laughs] That was the one thing I was adamant about not doing.

403
99:59:59,999 --> 99:59:59,999
I'm like, "You can take away my cello, my bike, my snowboard,

404
99:59:59,999 --> 99:59:59,999
you can take away all those things, but I'm still eating cheese".

405
99:59:59,999 --> 99:59:59,999
Like, as long as I was healthy, and I eat well, but I never eliminated anything in my diet

406
99:59:59,999 --> 99:59:59,999
because, you know, when I was first diagnosed, there were many theories, like she'd just - you know -

407
99:59:59,999 --> 99:59:59,999
would go to a vegan diet, she would never have any issues, it would help.

408
99:59:59,999 --> 99:59:59,999
Or if she took all the mercury out of her fillings, because they thought that could be related,

409
99:59:59,999 --> 99:59:59,999
and so it was like, all these theories

410
99:59:59,999 --> 99:59:59,999
After I think being bombarded so young with all these theories of ways to prevent stuff from happening,

411
99:59:59,999 --> 99:59:59,999
I was like: "No", you know, like "Whatever I'm doing," like, "it's fine." like,

412
99:59:59,999 --> 99:59:59,999
"I can't control this illness so I'm not going to change my diet if it's not really in the way."

413
99:59:59,999 --> 99:59:59,999
Like, I never adapted my eating any different things -

414
99:59:59,999 --> 99:59:59,999
and although at the same time, you know, a lot of people who - in the MS community -

415
99:59:59,999 --> 99:59:59,999
who have, and they said it's made a huge difference.

416
99:59:59,999 --> 99:59:59,999
But so, alright, I think everybody is different in that regard.

417
99:59:59,999 --> 99:59:59,999
I'm not a person to change their eating habits, just because I like to eat

418
99:59:59,999 --> 99:59:59,999
and I know I don't eat really poorly, so that's good. I'm pretty healthy.

419
99:59:59,999 --> 99:59:59,999
But I really think that exercise has been the biggest help in my treatment, in my "healing" if you will,

420
99:59:59,999 --> 99:59:59,999
you know? I think that's the only way I could get to this point. So...

421
99:59:59,999 --> 99:59:59,999
[HJ] How did your family understand the difficulties that you are looking at in the future?

422
99:59:59,999 --> 99:59:59,999
[Cohen] Wow! The worst was being - my mom was a therapist for many years

423
99:59:59,999 --> 99:59:59,999
and she had had a client who had MS, who was a ballerina,

424
99:59:59,999 --> 99:59:59,999
and then all of a sudden couldn't do ballet anymore, and so - so my mother really knew more than anybody

425
99:59:59,999 --> 99:59:59,999
(laughs) about the illness and ..... (40:09)

426
99:59:59,999 --> 99:59:59,999
and at this point I think that - I'm trying to think - I think that her client probably had progressive MS

427
99:59:59,999 --> 99:59:59,999
and I did not, so that was good, but so my mother knew the horrors of what this could mean

428
99:59:59,999 --> 99:59:59,999
and so, for her, it was way worse than for anyone else, because she knew all the bad stuff

429
99:59:59,999 --> 99:59:59,999
and she was like "Right, my daughter now must deal with all this."

430
99:59:59,999 --> 99:59:59,999
But I think in that - in those initial couple of years I got so close with them,

431
99:59:59,999 --> 99:59:59,999
because they were the only support system I really had, you know, I was 18 hours a day,

432
99:59:59,999 --> 99:59:59,999
I was only up sporadically, and like, my friends were all turning 21 and hitting the bars,

433
99:59:59,999 --> 99:59:59,999
and it's like "I can't do that anymore." So I became very close to my parents.

434
99:59:59,999 --> 99:59:59,999
And I'm very lucky that I got this opportunity to do it.

435
99:59:59,999 --> 99:59:59,999
And that they were cool enough to listen to me ditch as much as I did,

436
99:59:59,999 --> 99:59:59,999
because I needed that. I think everybody who gets dealt a hand of cards like that,

437
99:59:59,999 --> 99:59:59,999
you know, you got to be able to bitch, and that's mainly why I started the support group .....

438
99:59:59,999 --> 99:59:59,999
People need a place to feel safe to bitch.

439
99:59:59,999 --> 99:59:59,999
Because, you know, my poor parents got to hear every little crappy thing that I felt about everything,

440
99:59:59,999 --> 99:59:59,999
you know, and everything turned negative, and it's all a big spiral of that.

441
99:59:59,999 --> 99:59:59,999
When one thing goes wrong, everything [makes sounds suggesting things disintegrating].

442
99:59:59,999 --> 99:59:59,999
And this goes on and on. But luckily, they were kindly enough to just let me bitch.

443
99:59:59,999 --> 99:59:59,999
And my mom would smack some sense into me occasionally, .........(42:04)

444
99:59:59,999 --> 99:59:59,999
you know, but at the same time she's a brilliant mom (?).

445
99:59:59,999 --> 99:59:59,999
Because, like, this Christmas when I went skiing, with my paralyzed friend,

446
99:59:59,999 --> 99:59:59,999
he was like "Hem, I'm getting you on skis." I was like: "Why?" He's like: "I can do it, you can do it."

447
99:59:59,999 --> 99:59:59,999
I'm like: "Shit! He can't even use his right side, I can do this."

448
99:59:59,999 --> 99:59:59,999
So he got me on skis and it was very powerful.

449
99:59:59,999 --> 99:59:59,999
But my mother was like, you know: "Well, Chloe?" I was freaking out because I'd just heard bad news

450
99:59:59,999 --> 99:59:59,999
about my one friend from the group who had progressive MS, and now used that .........

451
99:59:59,999 --> 99:59:59,999
and it was really overwhelming for me. And my mother was so awesome, because she was like:

452
99:59:59,999 --> 99:59:59,999
"Chloe, you know, you're going to go skiing today. You can go skiing today.

453
99:59:59,999 --> 99:59:59,999
So I want you to go skiing and do this for people like him. Because he can't. "

454
99:59:59,999 --> 99:59:59,999
And it just pushed me even further and I got out there, and I skied.

455
99:59:59,999 --> 99:59:59,999
And I must admit, there was a moment when I was looking up, like "Holy shit, look what the hell I'm doing.

456
99:59:59,999 --> 99:59:59,999
...... God bless you, Mike (43:22)", you know, "and all of you progressive people", you know,

457
99:59:59,999 --> 99:59:59,999
"I'm doing this for you, as much as myself. But, you know, because I can do, I mean, that's so cool."

458
99:59:59,999 --> 99:59:59,999
[laughs] And I just - you don't know what you got until you lose it,

459
99:59:59,999 --> 99:59:59,999
and be appreciative of what you got and live in the moment.

460
99:59:59,999 --> 99:59:59,999
Those are my two parting [laughs] phrases. Appreciate what you got. And live in the moment.

461
99:59:59,999 --> 99:59:59,999
And I think if you go into life with that kind of attitude, you'll be OK.

462
99:59:59,999 --> 99:59:59,999
But you also have to know shit is always going to happen, you can't control shit from happening.

463
99:59:59,999 --> 99:59:59,999
But you deal with it in the moment. You don't worry about it, you deal with it in the moment.

464
99:59:59,999 --> 99:59:59,999
So yeah. [laughs]

465
99:59:59,999 --> 99:59:59,999
[HJ] That's awesome that you've made such amazing accomplishments.

466
99:59:59,999 --> 99:59:59,999
Thank you.

467
99:59:59,999 --> 99:59:59,999
[Cohen] I feel fortunate to be able to have the - the skill, I guess you could say,

468
99:59:59,999 --> 99:59:59,999
of communicating about this in an effective way, without judgment.

469
99:59:59,999 --> 99:59:59,999
And I know that I've my part in the MS - no: I'll forever do my part in the MS community,

470
99:59:59,999 --> 99:59:59,999
of bringing awareness and bringing hope, because I think a lot of people forget that anything's possible,

471
99:59:59,999 --> 99:59:59,999
and I am proof of that, and I think, the more you can realize what you have, the better it will be?

472
99:59:59,999 --> 99:59:59,999
I don't know. I'm just babbling now [laughs]

473
99:59:59,999 --> 99:59:59,999
[HJ] No! I want to share your DJ page.

474
99:59:59,999 --> 99:59:59,999
[Cohen] Yeah.

475
99:59:59,999 --> 99:59:59,999
[HJ] you can check URL on - .... you can check DJ CC and it'll come up.

476
99:59:59,999 --> 99:59:59,999
[Cohen] Ding!

477
99:59:59,999 --> 99:59:59,999
[HJ] Ah, that's here. This is Chloe's DJ page. If you go .... it's like DJ CC and it will come up.

478
99:59:59,999 --> 99:59:59,999
And I also - here, your "Face of MS" page.

479
99:59:59,999 --> 99:59:59,999
[Cohen] Yes. Thank you.

480
99:59:59,999 --> 99:59:59,999
[HJ] Are you starting a support group on Google+ as well?

481
99:59:59,999 --> 99:59:59,999
[Cohen] Yes, I have a disability support, which - its range is not just MS.

482
99:59:59,999 --> 99:59:59,999
it's deafness, mental issues, ....... and disabilities in general. (46:16)

483
99:59:59,999 --> 99:59:59,999
for all the ones who want to feel, you know, like they have support

484
99:59:59,999 --> 99:59:59,999
dealing with some kind of difference,

485
99:59:59,999 --> 99:59:59,999
Yeah. but it's really general, for any kind of support, but it is for, mostly, disability

486
99:59:59,999 --> 99:59:59,999
and that would be any kind of disability. So...

487
99:59:59,999 --> 99:59:59,999
(HJ) Awesome. You can Google Face of MS or DJ CC Boom. And now, she...

488
99:59:59,999 --> 99:59:59,999
[Cohen] That's my sign..... have sign. Because I've got really deaf friend, he's like:

489
99:59:59,999 --> 99:59:59,999
"I got - I got a sign for you, because everybody has got the CC Boom". That's my name sign.

490
99:59:59,999 --> 99:59:59,999
[HJ] You're such an amazing DJ, you caught her music. And even though it's not your own music,

491
99:59:59,999 --> 99:59:59,999
the way you manipulate those sounds is just awesome.

492
99:59:59,999 --> 99:59:59,999
[Cohen] THat's awesome. That's what I like to hear.

493
99:59:59,999 --> 99:59:59,999
[HJ laughs]

494
99:59:59,999 --> 99:59:59,999
[Cohen] Thank you, Candice. I really want to thank you for doing that' what you're doing.

495
99:59:59,999 --> 99:59:59,999
Not just for me, but I like hearing other people's stories too, you know,

496
99:59:59,999 --> 99:59:59,999
And I think that's important, because this - this social networking thing, this Google+ thing,

497
99:59:59,999 --> 99:59:59,999
is going to be ginormous, and I think that you're starting off with a bang by doing this.

498
99:59:59,999 --> 99:59:59,999
You're - yeah - keep it up, keep up the good work.

499
99:59:59,999 --> 99:59:59,999
[HJ] Yes, it makes me even appreciate what I have, because you know,

500
99:59:59,999 --> 99:59:59,999
people get so caught up in what they don't have, you know -

501
99:59:59,999 --> 99:59:59,999
[Cohen] Right.

502
99:59:59,999 --> 99:59:59,999
[HJ] They listen (?) to the media and they just want to keep buying

503
99:59:59,999 --> 99:59:59,999
and they want you to, you know, just wish you had these things, but you don't,

504
99:59:59,999 --> 99:59:59,999
and you know, talking with you ad other people, just make me know .... I do have a lot

505
99:59:59,999 --> 99:59:59,999
and I have to be grateful for what I have - what I don't - and it's really inspiring listening to you

506
99:59:59,999 --> 99:59:59,999
and your story

507
99:59:59,999 --> 99:59:59,999
[Cohen] Awesome]

508
99:59:59,999 --> 99:59:59,999
[HJ] ...overcame that, how you just appreciate everything now.

509
99:59:59,999 --> 99:59:59,999
ANd I think it happens for a reaon.

510
99:59:59,999 --> 99:59:59,999
There's a reason for what you have, there's a reason for, for everyone's ..... in life.

511
99:59:59,999 --> 99:59:59,999
And it just makes you that much stronger.

512
99:59:59,999 --> 99:59:59,999
[Cohen] Definitely. No, I wouldn't be who I was if I hadn't gone through all that, you know,

513
99:59:59,999 --> 99:59:59,999
I wouldn't be nearly this cool if I hadn't faced that much loss.

514
99:59:59,999 --> 99:59:59,999
But it's true, because I got a perspective that most people don't get in their early 20's, you know.

515
99:59:59,999 --> 99:59:59,999
Because I felt like I was 80 at 20, and I sort of kept - keep getting younger as I get older:

516
99:59:59,999 --> 99:59:59,999
it's kind of cool ]laughs]. But, you know, I could bound with my grandmother

517
99:59:59,999 --> 99:59:59,999
and try and get her to use a cane, and have actual evidence of why she should do it

518
99:59:59,999 --> 99:59:59,999
and be like - and you know, that's one of the perks to anMS is that you really educate people

519
99:59:59,999 --> 99:59:59,999
and make them appreciate what they have.

520
99:59:59,999 --> 99:59:59,999
And I think that's what I hope to do and I try to do it as often as I can.

521
99:59:59,999 --> 99:59:59,999
So (signs) power to the people! [laughs]

522
99:59:59,999 --> 99:59:59,999
[HJ] I hope it gives everything in your story (?) 49:46) everyone's turn and -

523
99:59:59,999 --> 99:59:59,999
[Cohen] Awesome. That's what I hope to do.

524
99:59:59,999 --> 99:59:59,999
[HJ] Yes, you're truly inspiring and, you know, you have a good support system

525
99:59:59,999 --> 99:59:59,999
and I think that's so important for everyone.

526
99:59:59,999 --> 99:59:59,999
[Cohen] Yes.

527
99:59:59,999 --> 99:59:59,999
[HJ]........................ that's really something major,

528
99:59:59,999 --> 99:59:59,999
you must have a, you know, a support system.

529
99:59:59,999 --> 99:59:59,999
It's so important. It doesn't have to be family: friends, you have your personal trainer

530
99:59:59,999 --> 99:59:59,999
who is - I think he's awesome, how he got you on that elliptical: that alone is just amazing.

531
99:59:59,999 --> 99:59:59,999
[Cohen] Yeah. He's awesome. He's like my brother but he's not. He is my, you know, trainer

532
99:59:59,999 --> 99:59:59,999
but he know- you know, he's a child of the 90's too, so he's always playing, like,

533
99:59:59,999 --> 99:59:59,999
old school 90's music, like ............ hahh

534
99:59:59,999 --> 99:59:59,999
[laughs] It's pretty cool, so we can bond over that kind of stuff.

535
99:59:59,999 --> 99:59:59,999
[HJ] I want to thank you again for sharing your story and -

536
99:59:59,999 --> 99:59:59,999
[Cohen] My pleasure, Candice, thank you for getting my story out there.

537
99:59:59,999 --> 99:59:59,999
[HJ] I hope to be broadcasting this tomorrow. If anyone wants to listen, they can check it out

538
99:59:59,999 --> 99:59:59,999
and I hope people check your Face of MS page and your DJ page, and see you, you know,

539
99:59:59,999 --> 99:59:59,999
the way you play those sounds, it's amazing. You have to listen to it to appreciate it. [laughs]

540
99:59:59,999 --> 99:59:59,999
[Cohen] That's awesome. Thank you, Candice.

541
99:59:59,999 --> 99:59:59,999
[HJ] Thank you, thank you again, we all appreciate-

542
99:59:59,999 --> 99:59:59,999
[Cohen] My pleasure.