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← Inspiring+ People - Chloe Cohen

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Showing Revision 15 created 03/31/2012 by Claude Almansi.

  1. [Hangout Junkie] Welcome to "Inspiring People"
  2. Today, we have Chloe Cohen, who is going to tell us an inspiring story
  3. of her struggle and how she has been dealing with Multiple Sclerosis for many years, now.
  4. Chloe, you are on.
  5. [Chloe Cohen] Hi, everybody. My name is Chloe
  6. and I've been living with Multiple Sclerosis for about 14 years, now.
  7. I was 20 years old when I was diagnosed and for me it was very quick - it was not -
  8. Most people generally have symptoms and then slowly, more shit starts happening,
  9. and then they are diagnosed.
  10. But for me, I hit my head real hard, and that head trauma caused symptoms pretty much instantly. Errh..
  11. [HJ] Oh, it's not genetic?
  12. [Cohen] They don't know. They still don't know if it's genetic, environmental or anything.
  13. So they're still trying to figure out that out.
  14. But - Yeah, nobody in my family has it, but like, one of the girls that I know with MS, her sister has it,
  15. and then, this other girl, her father has it.
  16. 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:
  17. when I was diagnosed 14 years ago, there were 3 drugs available to slow down the progression of the disease.
  18. Now, I think I should start by explaining what MS is.
  19. And that is a neurological disease that affects the central nervous system,
  20. with a wide, wide, wide range of symptoms, from numbness and tingling
  21. to blindness in an eye, to the loss o use of limbs, to chronic pain.
  22. And every single person with the illness is different, and how it affects them.
  23. And there is no two people who deal with it in exactly the same way.
  24. But before these drugs came out, there was no way to slow the progression of the illness.
  25. So that's why there is such an older generation of people with MS in wheelchairs,
  26. because they didn't have the benefits of these drugs that slow the progression,
  27. because it is constantly flowing, you never know what's going to happen today, you know,
  28. I've been now in remission for four years, and it's like a new life,
  29. because for 9 years of my life, it was this up and down thing of what's going to happen tomorrow,
  30. what - is this symptom not going to be here tomorrow, or what's going to happen tomorrow?
  31. So I very much learned how to [coughs] - excuse me - live win the moment.
  32. not worry about the future as much.
  33. But it's only because I went through all that, that brought me to this point.
  34. But I'm definitely a lucky one. I was very disabled initially.
  35. When I hit my head, it basically just jarred everything loose that was loose .
  36. I probably had, you know, when I look back at my childhood before I even had MS,
  37. I can recall things that happened during that, you know, that were like,
  38. my feet would go numb in the shower in high school.
  39. But I didn't even consider it, because they'd come back to life, you know.
  40. Only until I was diagnosed with MS did I go "Huh, maybe that was connected", you know,
  41. But, you know, I don't know - I don't know.
  42. In my - in my theory, I've probably had this since I was born and it probably came up all through my life.
  43. But I didn't get that diagnosis untill I initially hit my head
  44. and had this like fast bang: I can't use my left side, it was all - I had that constant tremor,
  45. I had vertigo, so it was like being wasted drunk all the time,
  46. but you're not drunk, so you didn't get the benefit of the drunkenness [laughs],
  47. you just got the bad stuff.
  48. [HJ] Did you suffer from ithereally bad, symptoms?
  49. [Cohen] Luckily, it was only about, maybe, 6 months to a year, where it was really bad.
  50. I was lucky because, you know, as soon as they discovered that it was MS,
  51. and I got put on medication and really the only thing that they have, it was steroids and steroids
  52. will calm the inflammation or whatever that's happening.
  53. So, getting on am oral dose of steroids relieved my tremor relatively
  54. and I was on - about some other drugs, there is this drug called antivir,
  55. And I don't even know what the heck it is, but it was something like working out, straightening you out.
  56. So, I didn't have vertigo anymore. So, I give credits to the medical establishment
  57. for having these drugs available, but it never was quite enough.
  58. And I found marijuana to be one of the only things that relieved me from these constant annoyances.
  59. It - at least, it brought me to a more accepting place, I guess you could say,
  60. where it's like "OK, if I have to deal with this 24/7, then I can, you know,
  61. as much physically as the marijuana was doing, the cannabis was doing,
  62. of calming my tremors and taking away my disconfort.
  63. It was also bringing psychological relief that "You know what? I can handle this and deal with this".
  64. And this is my life, and I'll move - I'll not worry about the future so much.
  65. But my story really is important because, you know, within 20 minutes, my life slipped .
  66. I had hit my head and I couldn't use my left side, and I was a cellist.
  67. This is what I was going to college for. I was going to study music,
  68. I was going to be in, like a rock band, rock n' roll on the cello, you know?
  69. That's what I thought. But then what's, you know. Yeah, I had to reramp my life.
  70. My life and, you know, and I was very angry for a very long time,
  71. because I think anyone who've got their passion worked from (?) that quickly (7:07)
  72. Anybody who ha any kind of instant loss knows, appreciates every little thing a little bit more,
  73. because you know what it's like to lose it.
  74. And i think it took me a lot of, a lot of therapy and a lot of, like,
  75. awesome conversations with people who get it, to be able to be at this point.
  76. But I did start a support group here, eight years ago, for younger people with MS,
  77. because all the support groups were full of old, bitter, angry people
  78. because they never got the benefit of the medication until, maybe, you know,15 years into their MS game
  79. and it has done - it has taken its toll already, so there is always so much -
  80. there is no repair of what 's been taken away.
  81. You know, they don't, they haven't - they're working on it, how to, you know,
  82. - figuring out ways to repair that myeline that's torn.
  83. Because when you have myeline - I left this major point out - you've lesions on your brain.
  84. So those lesions then form symptoms in whatever region of the brain they^re covering.
  85. Yet - but the disease is the demyelinization of your nerves,
  86. and that's what causes them to be set on i(?) mproperly, and things.
  87. So when you have a mass of nerves, no myeline now on your nerves (? - 8:43)
  88. and the messages get screwed up.
  89. But what I have learned after not walking, to be where I am at now,
  90. there is no way I could have done that without the concepts of neuroplasticity.
  91. And I think that's so important, like, our brains are so powerful and we are capable of anything,
  92. anything if you put your mind to it, and what I have proved to myself as well as,
  93. I guess, if the medical establishment would have studied me [laughs]
  94. But there is no study of me, you know,
  95. though what I have done is really carve new pathways in my brain.
  96. So now I'm using my left hand and it's never going to be the same,
  97. I'm never going to be able to play the cello like I did but at the same time, I can use it now.
  98. I mean, in all these 9 years, I didn't use it, and it's only through this, like, persistence I have,
  99. of exercising, pushing myself. And I think it helps bcause I was an athlete before I got MS.
  100. So I had this like, competitive "I'm hard-ass" kind of thing in me (laughs).
  101. Because I played soccer for many years, and we were really good, you know, our team was good,
  102. and so I have that - that hard-ass attitude of just like keep pushing, keep pushing.
  103. and the hard part with MS is, like, your energy is greatly depleted.
  104. And I know for me, an a lot of people, when they are first diagnosed with the illness,
  105. they can't do this stuff the same way they did it before,
  106. they have to figure out how to adapt to this new world of not being able to do things yourself.
  107. And when you are as stubborn and hard-ass that I was, there was no way,
  108. and how I was going to have to ask someone to change my light bulb,
  109. but it was at a point where I had that, so the light bulb would not get changed
  110. if I didn't ask someone to do it for me.
  111. And what I also had to realize is that generally, people like helping other people.
  112. It gives them a sense of, self-sense of worth, you know?
  113. And where I looked at it like, it's a downfall for me that I can't do myself, do it myself,
  114. what they're getting from it is like, "We like helping people, I like it, it makes me feel better about myself".
  115. And I know, you know, when I can help people with stuff that they don't know anything about,
  116. whether being DJing music technology, or MS for that matter, you know,
  117. it feels good to know that, like, I have something to give these people
  118. and so, like, for many years, I beat myself up being like, "Well, I can't do it myself, grrrr"
  119. But that attitude really got in the way of my growth, you know, I think you really have to learn that.
  120. I don't even know, I think I am lucky that I was able to adapt successfully.
  121. You know, I've reached a point now that the MS isn't ............. life
  122. which it was, for many, many years, ten years.
  123. And it was like that was every, everything I did, it was about MS.
  124. It was about having - First of all, graduating college: I mean I had to -
  125. I couldn't be the music major, because I couldn't even play anymore.
  126. So I changed into - speech communications major
  127. because I wanted to learn how to affect people effectively (laughs) with my words,
  128. and let them hear me, and not sign off.
  129. So, I thought it was important to learn the art of communication
  130. and how to communicate effectively, to affect people.
  131. And I think I did that really well, and I know I'm doing it really well,
  132. because my story is special and unique in the sense that it happened so quickly.
  133. 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
  134. and now I'm riding an elliptical machine. what the hell!
  135. Excuse me, but like, it's .............. it's just mind-blowing to me (13:12)
  136. Everyday, it's a mind-blowing experience like, brushing my teeth in the morning.
  137. I could never do that with two hands, and now I can.
  138. And so every morning, when I brush my teeth, I'm like, "Hell yeah, I'm doing this",
  139. and that' just a little thing, but it's like, I appreciate that stuff.
  140. Tie my shoes? Couldn't tie them for a good nine years.
  141. So now, I tie my shoes and I'm proud to tie my shoes, you know, it's appreciating those little things.
  142. And I wouldn't have had that perspective, I wouldn't have known this,
  143. I wouldn't be inline (?) this much (13:45) without the losses that I've had.
  144. And I really say, I thing Ram Dass said it,
  145. that, you know, through his strokes, this brought him closer to enlightenment.
  146. Because now he had a new perspective, you know,
  147. now he saw what it was like, you know, on the other side, or whatever.
  148. And I think it's been my duty to kind of let people look through a different lens for a minute
  149. and see, you know, look at themselves.
  150. In that regard, I mean, most people don't ever think about things like that happening, you know.
  151. But the fact is, they do and it could happen to any of us at any moment.
  152. Yet we are so concerned about the future, or so stuck on the past, that we're not living in the moment.
  153. And like, right now, I'm appreciating this moment, to be able to speak freely
  154. and let people know they've just got to appreciate what they have a little more.
  155. Because, people, you really don't know what you have until you lose it.
  156. And I think it's so important for people to appreciate what they have.
  157. And you're never going to - hopefully, you'll never have to go through that,
  158. of learning what it's like to lose all that stuff,
  159. because it's not easy, and it was only through some intense EMDR therapy
  160. which is eye-movement therapy, that I got peace with the fact that I can't play the cello
  161. like, you know, a symphony cellist anymore, you know?
  162. But it - that is some intense stuff., for anybody ........... trauma (15:29), it's mainly for trauma.
  163. But I always thought that I didn't go through war, I didn't have some horrorific incident happen to me.
  164. But at the same time, I went there because I was in a car accident,
  165. and the car accident was because of this darned tremor (laughs)
  166. and I thought for a brief second I could use my other hand to grab something,
  167. but in that brief second, my arm jerked and whoof, there went the car and we slipped in.
  168. I lost my two dogs in the car accident. It was very traumatic.
  169. But, so I was going to go, and I was like; "I'm never driving again."
  170. After that happened, I was like: "No: screw the car."
  171. So I went into this therapy, thinking I was going to work on my driving.
  172. But what I realized was how connected it was to having MS,
  173. and the trauma that I went through with my diagnosis.
  174. Because, you know, I was only 20 years old, my brain was not yet developped.
  175. So it is pretty impactful when all you know is no longer, you know?
  176. But I'm also very thankful because I had an amazing family to help me through it all, you know,
  177. that's a key piece. But this also why I started my group.
  178. Because I don't think that anybody needs to deal with that stuff alone.
  179. And fortunately now, there is, what, seven drugs available,
  180. First there's these three that were available before, and those three were only injectables.
  181. There is no - I think now, only in the last ouple of years, I don't even now,
  182. I'm kind of happy to live (?) with the medication
  183. because my medication has worked for me the whole time and I^m really lucky.
  184. But I know that there's like one or two oral medications out now,
  185. all the rest are injectables, and that's a big deal (laughs).
  186. That's probably one of the harder things, it was having to know I'd have to get poked in my butt
  187. every four days or whatever, and you know, for a lot of these, a lot of people,
  188. it's so interesting how everybody is so different with these injections.
  189. I have one friend that is like, adamant, like "I'm never letting people do this to me.
  190. This is I have to live this for myself, it's my medication".
  191. And then there is someone like me that's like, I can't even look at the needle,
  192. so I need someone else to do this for me.
  193. And, you know, 14 years later, I still have someone else do it for me because I -
  194. any way to make it easier for yourself?
  195. If I mean I have to do injections in my butt, into muscular leg, I'm talking big needles,
  196. I don't want to see the needle, I don't even want to know.
  197. But even to this day, I don't do it myself, I have a nurse do it.
  198. I'm really good at it at this point, I mean, so much practice,
  199. and I think I have enough needles now that we are about equal on the coverage.
  200. [HJ] Wow!
  201. [Cohen] But I think, you know, you know, I'm going to promote myself and I'm a DJ.
  202. And I do - I did transform that classical skill of music into my turntablism.
  203. It's vastly different. It's a different sound.
  204. And it was a huge loss to me, to not be able to create my own sound, and even turn, you know,
  205. being on turntables, it's someone else's music that I'm playing.
  206. But what I've learned is that nobody else can make it sound the way I'm making it sound.
  207. Because it's the art of the mixer, and it's really about hearing, and the harmony.
  208. This tattoo right here represents harmony because - and I have one on the back of my neck,
  209. that was initially made out of two base clefs in a - infinity symbol, right?
  210. But the tatto artist was not a musician and he put the dots on the wrong side,
  211. and I was like, Oh, can we just like... So he just made it in the infinity symbol.
  212. But it still has the same meaning to me, and that is that the music is never lost in me,
  213. no matter if I can play that or not.
  214. I will forever hear it, I will forever feel it.
  215. And that's what I put into my turntablism, you know?
  216. I'm not a big scratcher. Oh, I must admit, the other day, I was fucking around
  217. and I scratched some of this Saudi Arabian music, and made it House: it's pretty hot.
  218. Well, you know, that was just like, I don't know if I can do that again,
  219. it was kind of in the moment, but I am able to let out my creativity through the turntables now,
  220. and it took me a long time to get to this point,
  221. but now I know that the sounds I'm creating whether - and it's all other people's music,
  222. but the way I'm manipulating their music, it's an art within itself.
  223. And I think that there's plenty of DJs these days that just use a stupid program
  224. that does it all for them, and they just click in stuff,
  225. but they've lost the art form of what it really is, and i think if you go back to, like
  226. the original people who were DJs, they were - they were musicians
  227. and they were creating their own sound,
  228. and unfortunately, technology has kind of moved faster,
  229. and so all these kids are trying to be DJs, and it's kind of funny to me,
  230. because they don't even know how to match a beat.
  231. But you know, to each their own, and I do not judge (laughs) Bullshit, I totally judge.
  232. I am - I would be the first to say that. It's like if you don't know how to match a beat,
  233. why are you even trying? But, you know, that's a whole nutter (other?) show.
  234. [They laugh]
  235. [Cohen] But I think that the message I want to leave with, I guess you could say,
  236. would be, you know, "Stay positive." That's the only way I got through all this stuff with -
  237. by staying positive, then I kept pushing, you know, it was like:
  238. "Bring it on!" - now I made a poin, might (?) bring it on, you know?
  239. What else are you going to do with me? You know, I don't really -
  240. you know, I can beat it, whatever it is, you know, and yes, I may have this illness
  241. 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. but you know, at the same time, I say that, and there's definitely a lot of restrictions it puts on you.
  243. I mean, when you've chronic fatigue and you're sleeping 18 hours a day, you can-
  244. it's going to be hard not only to be able to hold on a job, more or less like "relationships",
  245. that's whole other ball of game. So it's like, you really have to learn how to adapt.
  246. And a lot of it is adapting to other people.
  247. Because, especially like now, even now, like, I don't look like I've an illness
  248. or anything wrong wrong with me at all.
  249. And then, I have a drink, and I look like I'm wasted.
  250. And I've been coralled (?) out of bars, even, a few months ago I got caught off at a bar,
  251. because the bartender saw me stumbling, and I was like: "But I have MS!"
  252. And it's like, I don't have it tattoed - I wear a bracelet now that says "I've MS",
  253. because I carried a card that I have MS, but this is much more like, bang!
  254. you don't have to, like, struggle, getting it out of your wallet or whatever.
  255. But, you know, it's all the invisible symptoms that nobody sees,
  256. and that's what I will make visible is that with this illness, you can't see the pain they're in,
  257. the struggles they're in, feeling like they have a tight belt around their waist, you know, 24/7,
  258. or whatever - you know, for me it was shaky arms, so you know, I - there was always tricks,
  259. there were times that I just sat on my arm.
  260. Because whenever I'd bring it out, it was like flopping in the wind.
  261. So it's - you learn tricks (laughs).
  262. But I think that a lot of people - it's - it's really hard for a lot of people,
  263. because they don't want to accept it, you know, and what is it?
  264. The 5 stages - were you a psych major?
  265. [HJ] Yeah.
  266. [Cohen] OK: spit them out: denial, anger, I don't know. What are those? All those stages you go through.
  267. You go through that stuff with MS. It's like, OK, because like that first year, I drank so much boo-
  268. so many beers because it was so much easier to say: "No, I'm just drunk", instead of
  269. "I've got this illness that's making me all uncoordinated".
  270. Alcohol was awesome for making me deny the fact that this stuff was going on - to a degree, to a degree.
  271. And then I was really angry because I was on a college campus,
  272. and everybody was so young and stupid and hadn't -
  273. .................... angry.
  274. I was like, "Everybody is stupid" [laughs].
  275. But then, after i got over the anger, I, you know, became accepting of it
  276. and I knew that the anger wasn't getting me anywhere, any of these -
  277. 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. And I really think that because of that EMDR therapy, I became at peace with it all,
  279. and it still sucks. I'm never going to say it doesn't suck,
  280. but you know, fortunately for me, the only thing that I have to deal with is injections.
  281. You know, I don't have - my tremor is calm enough now, all my symptoms are pretty regulated,
  282. I - So it's like a new lease on life, I feel. And so -
  283. [HJ] .... of MS?
  284. [Cohen] What?
  285. [HJ] Are there different types of MS?
  286. [Cohen] Yes. Thank you for asking. There are, and that's what a lot of people don't know.
  287. And the majority of people with MS have relapsing or remitting MS,
  288. which is one that comes and goes as it pleases.
  289. But these drugs prevent the quicker going downs and kind of trick the brain into the -
  290. thinking the stuff's there that isn't.
  291. But then there is the progressive and secondary progressive, which are the really debilitating kind -
  292. ah no (?), the kinds with the people in the wheelchairs, and the people that (then ?) get bedridden.
  293. And unfortunately, there is no medication for them.
  294. So for - this is my biggest concern now,
  295. because they've got all of us relapsing or remitting people pretty much under control,
  296. but it's these people that just keep getting worse and worse and worse
  297. and, you know, that's the hardest part of MS to watch or even talk about.
  298. Because, like, when I started this support group 8 years ago,
  299. there was a few people in there with progressive MS,
  300. and you know, they started coming to the meetings and they were OK,
  301. they might have had a little tremor, but we all had tremors at that point.
  302. So it was like, "Yeah, I -". But we could relate to each other,
  303. and one of these guys I got very close with, and he had progressive. Oh, he still has progressive.
  304. I should not speak of him in that way.
  305. But just the quick downfall of his system, and how it just fell apart, you know, like,
  306. so he comes to this meeting, and maybe he's got the old tremor,
  307. the next month he comes and he's got optic neuritis in one eye, one eye is just looking out that way,
  308. you know, and then it's like, bad talk (?) is another symptom.
  309. Then the next month later, he's not even walking, you know, he's using canes.
  310. And then the month after that, he's in a wheelchair.
  311. And now this guy is totally bedridden, to where his mom has to feed him and bathe him,
  312. and his independence has been taken, and it's really hard.
  313. Because then unlike - well how did I get so lucky? Why am I so lucky that I could get better?
  314. If I could just have given him half of my recovery or whatever, we'd both be in better places.
  315. But it's not how it works. But for me, that's my biggest motivation, you know,
  316. for all of these people with MS who really can't do it anymore, like I'm going to keep pushing harder,
  317. and I'm going to ride that elliptical machine, because I can, damn it.
  318. And you know, for me, that was such a huge thing, because that elliptical machine and I were enemies.
  319. We - my left and right body did not work together, that whole piece of my brain was kind of messed up,
  320. so an elliptical machine was the utter, the best example of the left and right brain working together
  321. at the same - you know, that total coordination right there. And -
  322. [HJ] Do you want to talk about what induced you to use the elliptical?
  323. [Cohen] What?
  324. [HJ] Do you want to talk about who pushed you to do the elliptical?
  325. [Cohen] Oh, my trainer! God bless my trainer!
  326. Because I met him 5 years ago,
  327. [HJ] Ah!
  328. [Cohen] and I wasn't using my left arm. I could walk but I had very little coordination and balance.
  329. So I always thought I was kind of drunk, which is fun, in public.
  330. But he understood right away that this was a neurological disease and that it wasn't about my muscles,
  331. because the trainer I had before him was like a total jerk, and he was:
  332. "I'm going to whip you into shape" and like - he definitely put some muscle on me
  333. but there was no - no pathways being carved [laughs].
  334. So when I got this .... - this trainer, he got it and he was just challenging me
  335. with motions I hadn't been doing for 9 years, with, like, using my arm and bringing it out ,
  336. and acting as if I'm lifting my dog and putting him on a shelf over here,
  337. which was a motion I didn't do, but - but from doing this, repetitively, for years,
  338. it's like now, I'm throwing medicine balls with my left hand, you know?
  339. And it's only because he's kind of a - he's an awesome trainer, because he's like -
  340. he's fun: we have fun, that's the best piece of it, you know, he makes games out of everything,
  341. and I being the athlete that I was, I wanted to be like, "No, I can do it ."
  342. he's like, "You're done, you're done!" I'm like "No! I got to do it one more time,
  343. just to prove to myself I can do it".
  344. But - so we got this elliptical machine and I just looked at it for months,
  345. like it's over there, and that's there for other people.
  346. And then finally, one day, he's like "YOu won't even try and ride this?"
  347. I was like: "Errh, I don't know, you think I can?" I mean, he has been -
  348. 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. because both my left and right were working simultaneously together,
  350. which never happened for not in - you know - 14 years [laughs].
  351. So yeah, it was pretty darned amazing. I was just like: "Holy -" I was freaking out.
  352. I'm surprised that I didn't start bawling in front of him. But I can - it was also awesome for him
  353. because he was like, "I'm doing my job and I'm good at it!" you know,
  354. And I have to give him credit because, you know, if I had been working out by myself all this time,
  355. I wouldn't have seen any of these improvements.
  356. But because I have this guy on my side that's like pushing me and challenging me,
  357. and keeping me motivated,
  358. that's the biggest thing, like, I've got no motivation to go to the gym, I hate the gym,
  359. you know, I don't mind going to look at the sexy men, but there's a lot more unattractive men then sexy
  360. men [they giggle], so screw that!
  361. But you know, it's really about me and my personal gain (? game?).
  362. I just feel very lucky and blessed, and I think everybody needs to kind of take -
  363. take a moment and appreciate all the things they have, until you lose it.
  364. I wish I would have known, you know. If I would have known that was going to happen to me,
  365. I probably would have been playing my cello every day, multiple times a day, and doing all this stuff.
  366. But I was just a stupid kid and I didn't realize that anything like that could ever happen.
  367. [HJ] Nobody knows, nobody.
  368. [Cohen] No, they don't, but they'd - but I - I think that I'm trying to -
  369. I'm trying to kind of change the face of MS a bit. I'm trying to show the positive side.
  370. Not all these people in wheelchairs and all negative, because that really is the older generation of MS,
  371. and it's not like that anymore. I mean, the support group that's still running,
  372. I mean there's new people coming in every months, and they are all at different levels
  373. in dealing with their illness.
  374. Some of them - there was one girl a few months ago, who hadn't even been diagnosed yet,
  375. but she knew it, because her father had MS and she - she knew.
  376. And, you know, watching her go through that whole process of getting the diagnosis, having to adapt,
  377. taking the injections, and being there, knowing that,
  378. just being able to connect with other people about it, helps so greatly,
  379. like even that - the guy with progressive MS, I think one of our most binding moments
  380. was just standing in his kitchen and he fell, and he's like:
  381. "Damn! Don't you hate it when the earth moves out from underneath you!"
  382. And I go "Oh my God! I love this guy!", like I'd experienced that too.
  383. But it's very rare that you're going to meet someone who has experienced that without being drunk,
  384. you know what I'm saying?
  385. And it's very - I know that guy and I are forever in each other's hearts,
  386. because I think we were both like the first people who had the same illness you could relate,
  387. and he was like a track star and all this before the MS affected him,
  388. So he also lost his passions but we also learned to adapt and you know,
  389. whether I was going to be this "rock star cellist)" or not,
  390. it's like, life has lead me in this direction and I can only do -
  391. go forward and spread the positive stuff, and that's what I'm trying to do,
  392. and I'm trying to affect people and let them know, "No, you're not alone.
  393. and there isn't a cure for this illness. So it would be nice if there was, you know.
  394. So help us get there and help - help"
  395. It's interesting because I think more and more, now, if I say I've MS, somebody will say;
  396. "Oh, my sister has MS - my aunt has MS". Somebody knows somebody with MS.
  397. And I'm glad that's the case, because people, you know, 14 years ago, they didn't even know what it was.
  398. And it's nice to know that people actually are getting diagnosed faster,
  399. which is helpful because they can get on drugs faster and avoid giant relapses, I guess.
  400. ... I dont'know (?)
  401. [HJ] Did you have to change your diet at all?
  402. [Cohen] No [laughs] That was the one thing I was adamant about not doing.
  403. I'm like, "You can take away my cello, my bike, my snowboard,
  404. you can take away all those things, but I'm still eating cheese".
  405. Like, as long as I was healthy, and I eat well, but I never eliminated anything in my diet
  406. because, you know, when I was first diagnosed, there were many theories, like she'd just - you know -
  407. would go to a vegan diet, she would never have any issues, it would help.
  408. Or if she took all the mercury out of her fillings, because they thought that could be related,
  409. and so it was like, all these theorisms.
  410. After I think being bombarded so young with all these theories of ways to prevent stuff from happening,
  411. I was like: "No", you know, like "Whatever I'm doing," like, "it's fine." like,
  412. "I can't control this illness so I'm not going to change my diet if it's not really in the way."
  413. Like, I never adapted my eating any different things -
  414. and although at the same time, you know, a lot of people who - in the MS community -
  415. who have, and they said it's made a huge difference.
  416. But so, alright, I think everybody is different in that regard.
  417. I'm not a person to change their eating habits, just because I like to eat
  418. and I know I don't eat really poorly, so that's good. I'm pretty healthy.
  419. But I really think that exercise has been the biggest help in my treatment, in my "healing" if you will,
  420. you know? I think that's the only way I could get to this point. So...
  421. [HJ] How did your family understand the difficulties that you are looking at in the future?
  422. [Cohen] Wow! The worst was being - my mom was a therapist for many years
  423. and she had had a client who had MS, who was a ballerina,
  424. and then all of a sudden couldn't do ballet anymore, and so - so my mother really knew more than anybody
  425. (laughs) about the illness and ..... (?)
  426. and at this point I think that - I'm trying to think - I think that her client probably had progressive MS
  427. and I did not, so that was good, but so my mother knew the horrors of what this could mean
  428. and so, for her, it was way worse than for anyone else, because she knew all the bad stuff
  429. and she was like "Right, my daughter now has to deal with all this."
  430. But I think in that - in those initial couple of years I got so close with them,
  431. because they were the only support system I really had, you know, I was sleeping 18 hours a day,
  432. I was only up sporadically, and like, my friends were all turning 21 and hitting the bars,
  433. and it's like "I can't do that anymore." So I became very close to my parents.
  434. And I'm very lucky that I got this opportunity to do it.
  435. And that they were cool enough to listen to me bitch as much as I did,
  436. because I needed that. I think everybody who gets dealt a hand of cards like that,
  437. you know, you got to be able to bitch, and that's mainly why I started the support group.
  438. My people need a place to feel safe to bitch.
  439. Because, you know, my poor parents got to hear every little crappy thing that I felt about everything,
  440. you know, and everything turned negative, and it's all a big spiral of that.
  441. When one thing goes wrong, everything [makes sounds suggesting things disintegrating].
  442. And this goes on and on. But luckily, they were kindly enough to just let me bitch.
  443. And my mom would smack some sense into me occasionally, like:
  444. "Chloe!", you know", like), but at the same time she's a brilliant mom (?).
  445. Because, like, this Christmas when I went skiing, with my paralyzed friend,
  446. he was like "Hem, I'm getting you on skis." I was like: "What?" He's like: "I can do it, you can do it."
  447. I'm like: "Shit! He can't even use his right side, I can do this."
  448. So he got me on skis and it was very powerful.
  449. But my mother was like, you know: "Well, Chloe?" I was freaking out because I'd just heard bad news
  450. about my one friend from the group who had progressive MS, and now he is bedridden and all this
  451. and it was really overwhelming for me. And my mother was so awesome, because she was like:
  452. "Chloe, you know, you're going to go skiing today. You can go skiing today.
  453. So I want you to go skiing and do this for people like him. Because he can't. "
  454. And it just pushed me even further and I got out there, and I skied.
  455. And I must admit, there was a moment when I was looking up, like "Holy shit, look what the hell I'm doing."
  456. Well, I'm like: "God bless you, Mike", you know, "and all of you progressive people", you know,
  457. "I'm doing this for you, as much as myself. But, you know, because I can do it, I mean, that's so cool."
  458. [laughs] And I just - you don't know what you got until you lose it,
  459. and be appreciative of what you got and live in the moments.
  460. Those are my two parting [laughs] phrases. Appreciate what you got. And live in the moment.
  461. And I think if you go into life with that kind of attitude, you'll be OK.
  462. But you also have to know shit is always going to happen, you can't control shit from happening.
  463. But you deal with it in the moment. You don't worry about it, you deal with it in the moment.
  464. So yeah. [laughs]
  465. [HJ] That's awesome that you've made such amazing accomplishments.
  466. Thank you.
  467. [Cohen] I feel fortunate to be able to have the - the skill, I guess you could say,
  468. of communicating about this in an effective way, without judgment.
  469. And I know that I've my part in the MS - no: I'll forever do my part in the MS community,
  470. of bringing awareness and bringing hope, because I think a lot of people forget that anything's possible,
  471. and I am proof of that, and I think, the more you can realize what you have, the better it will be?
  472. I don't know. I'm just babbling now [laughs]
  473. [HJ] No! I want to share your DJ page.
  474. [Cohen] Yeah.
  475. [HJ] you can check URL on - .... you can check DJ CC and it'll come up.
  476. [Cohen] Ding!
  477. [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. And I also - here, your "Face of MS" page.
  479. [Cohen] Yes. Thank you.
  480. [HJ] Are you starting a support group on Google+ as well?
  481. [Cohen] Yes, I have a disability support, which - its range is not just MS.
  482. it's deafness, mental issues, ....... (?) and disabilities in general.
  483. for all the ones who want to feel, you know, like they have support
  484. dealing with some kind of difference,
  485. Yeah. but it's really general, for any kind of support, but it is for, mostly, disability
  486. and that would be any kind of disability. So...
  487. (HJ) Awesome. You can Google Face of MS or DJ CC Boom. And now, she...
  488. [Cohen] That's my sign, my deaf sign. Because I've got really deaf friend, he's like:
  489. "I got - I got a sign for you, because everybody has got the CC Boom". That's my name sign.
  490. [HJ] You're such an amazing DJ, you caught her (?) music. And even though it's not your own music,
  491. the way you manipulate those sounds is just awesome.
  492. [Cohen] THat's awesome. That's what I like to hear.
  493. [HJ laughs]
  494. [Cohen] Thank you, Candice. I really want to thank you for doing that's what you're doing.
  495. Not just for me, but I like hearing other people's stories too, you know,
  496. And I think that's important, because this - this social networking thing, this Google+ thing,
  497. is going to be ginormous, and I think that you're starting off with a bang by doing this.
  498. You're - yeah - keep it up, keep up the good work.
  499. [HJ] Yes, it makes me even appreciate what I have, because you know,
  500. people get so caught up in what they don't have, you know -
  501. [Cohen] Right.
  502. [HJ] They listen (?) to the media and they just want to keep buying
  503. and they want you to, you know, just wish you had these things that you don't,
  504. and you know, talking with you ad other people, just make me know that I do have a lot
  505. and I have to be grateful for what I have - what I don't - and it's really inspiring listening to you
  506. and your story
  507. [Cohen] Awesome]
  508. [HJ] ...overcame that, how you just appreciate everything now.
  509. And I think it happens for a reaon.
  510. There's a reason for what you have, there's a reason for, what everyone's .....(?) in life.
  511. And it just makes you that much stronger.
  512. [Cohen] Definitely. No, I wouldn't be who I was if I hadn't gone through all that, you know,
  513. I wouldn't be nearly this cool if I hadn't faced that much loss.
  514. But it's true, because I got a perspective that most people don't get in their early 20's, you know.
  515. Because I felt like I was 80 at 20, and I sort of kept - keep getting younger as I get older:
  516. it's kind of cool ]laughs]. But, you know, I could bond with my grandmother
  517. and try and get her to use a cane, and have actual evidence of why she should do it
  518. and be like - and you know, that's one of the perks to an MS is that you really educate people
  519. and make them appreciate what they have.
  520. And I think that's what I hope to do and I try to do it as often as I can.
  521. So (signs) power to the people! [laughs]
  522. [HJ] I hope it gives everything in your story (?) 49:46) everyone's turn and -
  523. [Cohen] Awesome. That's what I hope to do.
  524. [HJ] Yes, you're truly inspiring and, you know, you have a good support system.
  525. I think that's so important for everyone.
  526. [Cohen] Yes.
  527. [HJ] Whether it's something ........................ (?) that's really something major,
  528. you must have a, you know, a support system.
  529. It's so importan, I meant. It doesn't have to be family: friends, you have your personal trainer
  530. who is - I think he's awesome, how he got you on that elliptical: that alone is just amazing.
  531. [Cohen] Yeah. He's awesome. He's like my brother but he's not. He is my, you know, trainer
  532. but he know- you know, he's a child of the 90's too, so he's always playing, like,
  533. old school 90's music, like ............ hahh
  534. [laughs] It's pretty cool, so we can bond over that kind of stuff.
  535. [HJ] I want to thank you again for sharing your story and -
  536. [Cohen] My pleasure, Candice, thank you for getting my story out there.
  537. [HJ] I hope to be broadcasting this tomorrow. If anyone wants to listen, they can check it out
  538. and I hope people check your Face of MS page and your DJ page, and see you the way, you know,
  539. play those sounds, it's amazing. You have to listen to it to appreciate it. [laughs]
  540. [Cohen] That's awesome. Thank you, Candice.
  541. [HJ] Thank you, thank you again, we all appreciate-
  542. [Cohen] My pleasure.