Inspiring+ People - Chloe Cohen

Each week, we will be interviewing people who are truly inspiring. They come from all over the world, and have overcome obstacles that make life that much harder. Their stories are inspirational, and allow us to be grateful for what we have in life.

"Many people have come to see disease as a gift in their lives. Often, they learn that they are more than their disease, and once freed by that certainty they go on to live the rest of the story."

This week, we interviewed Chloe Cohen. A truly inspiring woman who has been dealing with Multiple Sclerosis for many years. Chloe's inner strength and determination to help her deal with MS allows us to realize that their is hope for everyone. I feel honored to be able to share Chloe's story with everyone, and I hope it gives you as much enjoyment as it has given to me. Women like Chloe are hard to come by. Too many of us give up before we even try, especially, when suffering from a disease such as MS. Chloe's openness and willingness to share her story with all of us is amazing.

[Interviewer] Welcome to "Inspiring People"

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

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

Chloe, you are on.

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

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

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

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

and then they are diagnosed.

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

[Interviewer] Oh, it's not genetic?

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

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

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

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

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:

when I was diagnosed 14 years ago, there were 30 drugs available to slow down the progression of the disease.

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

And that's a neurological disease that affects the central nervous system,

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

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

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

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

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

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

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

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

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

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

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

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

not worry about the future as much.

But it's only because I went through all that, that brought me to this for me (? - 3:12)

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

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

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

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

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

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

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

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

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

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

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

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

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

you just got the bad stuff (4:35)

[nterviewer] Did you suffer from it really bad, sometimes? (?)

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

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

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

to calm the inflammation or whatever that's happening.

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

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

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

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

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

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

At least, it brought me to a more accepting place, I guess you could say,

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

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

of calming my tremors and taking away my disconfort.

It was also bringing psychological relief that, you know what ? I can handle this and do it.

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

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

I had hit my head and I couldn't use my left side, and that was a challenge (?).

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

I was going to be a Michael Bark Band (?) ..................... (6:46)

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

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

because I think anyone who've got their passion (?).... quickly (? /:07)

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

because you know what it's like to lose it. (7:18)

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

awsome conversation with people who get it, to be able to be at this point.

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

because all the support groups were for old ........... people

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

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

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

You know - they're working on it, how to - figuring out ways to repair that myeline that's .....

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

So those lesions then form symptoms in whatever area of the brain they're covering.

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

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

So when you have ........... nerves (8:45)

and the messages get screwed up.

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

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

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

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

I guess, if the medical establishment would have studied me?

But there is no study of me, you know

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

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

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

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

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

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

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

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

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

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

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

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

And we knew that as stubborn and hard-ass that I was, there was no way,

and how I would ve to ask someone to change my light bulb,

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

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

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

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

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

what they're getting from it is like, "We like helping people, I like it,

it makes me feel better about myself".

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

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

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

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

But that attitude really got in the way of my growth,

you know, I think you really have to learn that.

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

You know, I've reached a point now that the MS isn't ............. life (11:59)

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

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

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

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

So I changed into , speech (?) communication major (12:22)

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

and let them hear me, and not sign off.

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

and how to communicate effectively, to affect people.

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

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

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

and now I'm riding and I ...................... what the hell! (13:06)

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

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

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

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

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

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

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

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

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

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

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

Because now he had a new perspective, you know,

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

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

and see, you know, look at themselves.

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

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

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

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

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

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

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

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

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

because it's not easy, and it was only through some intense MDR (?) theraoy (15:12),

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

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

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

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

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

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

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

but in that brief second, my arm jerked and whoof, there went the car and we slipped (15:58)

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

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

After that happened, I was like: "No: screw the car." (16:11)

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

But what I realized was how connected it was to having a mess.,

and the trauma that I went through with my diagnosis.

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

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

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

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

Because I don't think that anybody needs to deal with that stuff alone (16:55)

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

........ just the three (17:02) that were available before, and those three were only injectables,

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

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

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

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

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

That's probably one of the harder things, it was having to know I ...... poked in my butt (17:40)

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

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

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

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

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

so I need someone else to do this for me.

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

....... you want to make it easier for yourself? (18:18)

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

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

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

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

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

But I thik, you know, you know, I'm going to promote myself and I'm a DJ.

And I -

[JOurnalist] (Incomprehensible)

[Cohen] I did transform that classical skill of music into my turntablism.

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

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

being on turntables, it's someone else's music that I'm playing.

But what I've learned is that nobody else can make it sound the way I'm making it sound.

Because it's the art of the mixer, and it's really about hearing, and the harmony -

this tattoo right here represents harmony because - and I have one on the back of my neck,

that was initially made out of two base clefs in a - in........... (19:52)

But the tatto artist was not a musician and he put the dots on the wrong side,

and I was like, Oh, can we just like... SO he just made it in ..........(20:02)

But it still has the same meaning to me, and that is that the music is never lost in me,

no matter if I can play that or not.

I will forever hear it, I will forever feel it.

And that's what I put into my turntablism, you know?

I'm not a big scratcher. Oh, I must admit, the other day, I was fucking around

and I scratched some of this Saudi Arabian music, and made it House: it's pretty hot.

[Journalist] Now....

[Cohen] Well, you know, that was just like, I don't know if I can do that again,

it was kind of in the moment, but I am able to let out my creativity through the turntables now,

and it took me a long time to get to this point, but it's -

now I know that the sounds I'm creating whether - and it's all other people's music,

but the way I'm manipulating their music, it's an art within itself.

And I think that there's plenty of DJs these days that just use a stupid program

that does it all for them, and they just click in stuff,

but they've lost the art form of what it really is, and i think if you go back to, like

the original people who were DJs, they were - they were musician

and they were creating their own sound,

and unfortunately, technology has kind of moved faster,

and so all these kids are trying to be DJs, and it's kind of funny to me,

because they don't even know how to match a beat.

But you know, to each their own, and I do not judge (laughs) Bullshit, I totally judge.

I am - I would be the first to say that. It's like if you don't know how to match a beat,

why are you even trying? BUt, you know, that's a whole other show.

[Journalist and Cohen laugh]

[Cohen] BUt I think that the message I want to leave with, I guess you could say,

would be, you know, "Stay positive." That's the only way I got through all this stuff with -

by staying positive, then I kept pushing, you know, it was like, you know:

"Bring it on!" - now I made a point to bring it on, you know?

What else are you going to do with me? You know, I don't really -

you know, I can beat it, whatever it is, you know, and yes, I may have this illness

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,

but you know, at the same time, I say that, and there's definitely a lot of restrictions it puts on you.

I mean, when you've chronic fatigue and you're sleeping 18 hours a day, you can-

it's going to be .... hard not only to be able to hold on a job, more or less like "relationships",

that's whole other ball of game. So it's like, you really have to learn how to adapt.

And a lot of it is adapting to other people.

Because, especially like now, even now, like, I don't look like I've an illness

or anything wrong wrong with me at all.

And then, I have a drink, and I look like I'm wasted.

And I've been called (?) out of bars even (23.29), a few months ago I got called (?) off at a bar,

because the bartender saw me stumbling, ad^nd I was like: "But I have MS!"

And it's like, I don't have it tattoed - I wear a bracelet now that says "I've MS",

because I carried a card that I have MS, but this is much more like, bang!

you don't have to, like, struggle, to get it out of your wallet or whatever.

But, you know, it's all the invisible symptoms that nobody sees,

and that's what I will make visible is that with this illness, you can't see the pain they're in,

the struggles they're in, feeling like they have a tight belt around their waist, you know, 24/7,

or whatever - you know, for me it was shaky arms, so you know, I - there was always tricks,

there were times that I just sat (?) on my arms (24:22).

Because whenever I'd bring it out, it was like flopping in the wind.

So it's - you learn tricks (laughs).

But I think that a lot of people - its - it's really hard for a lot of people,

because they don't want to accept it, you know, and what is it?

The 5 stages - were you a ...........? (24.45)

[Journalist] Yeah.

[Cohen] OK: spit them out: denial, anger, I don't know. What are those? All those stages you go throug.

You go through that stuff with MS. It's like, OK, because like that first year, I drank so much boo-

so many beers because it was so much easier to say: "No, I'm just drunk", instead of

"I've got this illness that's making me all uncoordinated".

Alcohol was awesome for making me deny the fact that this stuff was going on - to a degree, to a degree.

And then I was reallyhe angry because I was on a college campus,

and everybody was so young and sttupid and hadn't -

.................... angry (25:34)

I was like, "Everybody is stupid" [laughs].

But then, after i got over the anger, I, you know, became accepting of it

and I knew that the anger wasn't getting me anywhere, any of these -

or the sadness for that matter, you know, or any of these emotions, wasn't taking me to a place of peace with it..

And I really think that because of this........ therapy (26:05), I became at peace with it all,

and it still sucks. I'm never going to say it doesn't suck,

but you know, fortunately for me, the only thing that I have to deal with is these injections. (26:15)

You know, I don't have - my tremor is calm enough now, all my symptoms are pretty regulated,

I - So it's like a new lease on life, I feel. And so -

[Interviewer] .... of MS(26:29)

[Cohen] What?

[Interviewer] Are there different types of MS?

[Cohen] Yes. Thank you for asking. There are, and that's what a lot of people don't know.

And the more ......... people(25:40) with MS have relapsing or remitting MS,

which is one that comes and goes as it pleases.

But these drugs prevent the quicker going downs and kind of trick the brain into the -

thinking the stuff's there that isn't.

But then there is the progressive and secondary progressive, which are the really debilitating kind -

ah no (?), the kinds with the people in the wheelchairs, and the people that (then) get bedridden. (27:14)

And unfortunately, there is no medication for them.

So for - this is my biggest concern now,

because they've got all of us relapsing or remitting people pretty much under control,

but it's these people that just keep getting worse and worse and worse

and, you know, that's the hardest part of MS to watch or even talk about.

Because, like, when I started this support group 8 years ago,

there was a few people in there with progressive MS,

and you know, they started coming to the meetings and they were OK,

they might have had a little tremor, but we all had tremors at that point.

So it was like, "Yeah, I -". But we could relate to each other,

and one of these guys I got really close with, and he had progressive. Oh, he still has progressive.

I should not speak of him in that way.

But just the quick downfall of his system, and how it just fell apart, you know, like,

so he comes to this meeting, and maybe he's got the old tremor,

the next month he comes and he's got optic neuritis in one eye, one eye is just looking out that way,

you know, and then it's like, ........ is another symptom (28:44)

Then the next month later, he's not even walking, you know, he's using canes.

And then the month after that, he's in a wheelchair.

And now this guy is totally bedridden, to where his mom has to feed him and bathe him,

and his independence has been taken, and it's really hard.

Because then unlike - well how did I get so lucky? Why am I so lucky that I could get better?

If I could just have given him half of my recovery or whatever, we'd both be in better places.

But it's not how it works. But for me, that's my biggest motivation, you know,

for all these people with MS who really can't do it anymore, like I'm going to keep pushing harder,