Boston, MA

Louise

None of us had heard of aphasia before this and I think we're all very bright well-read people, but we had... when the doctor first said "aphasia," we looked at each other like, "what does that mean?"

Betty

No idea what it was, no idea at all.

Louise

Nothing.

Betty

No.

Louise

And I had no idea what really a stroke was or what you go through and the type of the damage that you can get from a stroke: paralysis, vision problems, language problems, blindness, seizures, loss of hearing.

Picturing Aphasia

Louise

But it's basically a language disorder.  And I didn't realize that language covers so many different things.  It's not just speaking, it's writing, it's reading, it's signals or pantomime.

Betty

The person knows what he's trying to say but it's not coming out the way he wants it to come out.  And that's like a pretty simple explanation, but nobody ever told us that.

Bob

And we're sitting in the kitchen room and I said something about something.  And I couldn't tell you what it was and what I said, I couldn't said what I said and everyone thought it was funny that I was looking at this and I didn't know what I said.  And I knew it was something that didn't make any sense and 2 seconds everyone else knew there was a problem.  And we called a doctor, not a doctor but the... the M.M.'s.  What?

Betty

Ambulance.

Bob

Yeah and they just decided to get me out of here.  I was there for about three weeks and one day it was worse and the next day it was worser, but we had seeing this place and they were trying to help me and I was trying to help and I guess it was better, but I didn't know anything except please take me home.  I couldn't do anything.  I wasn't seeing well.  I had difficult walking standing and I knew it was a big problem.

Chris

Charlottesville, VA

Chris

My name is Chris Wharam.  I have a age is 38.  I have a car accident about maybe 18 years ago and car accident and damage in the head.  It's about maybe one-sixth one-seventh brain is damage.  I don't know what angle, but I hit a fence, pole and tree together and the next day I had a stroke.  I couldn't talk at all and then also damage in the stroke.  The stroke is paralyze my left side, paralyze and doctors said is "B" paralyze.

Kate

Edison, NJ

Kate

I worked at Marlboro Psychiatric Hospital on their grounds at New Hope.  They had teenage boys that were on drugs and alcohol and I was the family counselor up there.  I always take shortcuts to miss the lights so I went on the other side of Marlboro Psychiatric Hospital and it was on Pleasant Valley Road.  I heard that the deer came through the windshield and at that point that's when he cracked my face and then the car I hit a stump and it turned around.  And then there was someone doing his lawn and he said several times my car went upside down and the deer was still in the car.  I had several hemorrhages in the brain so they put that tube in directly into the brain.  And my eyes were all swollen but they waited for everything for like ten days my daughter told me just to make sure I would be alive.  And so they finally did all these little surgeries.  I was still in the coma.  I was in the coma for 2 months and one day I just came out of that.  And then I had amnesia.

Jane

Charlottesville, VA

Jane

It was just a beautiful day.  I had one of my girls.  We were going horse backing.  We're having so much fun.  Then we decided that we have to get ready because we're going to buy a... going out for dinner.  We got ready to get in the car.  We're taking about what were going to do.  What are you going to have for dinner? And the little kids were so cute.  We got then and we started eating.  Starting to get this headache and at the beginning it was just a small headache.  Then it got worse and worse.  So we decided that we're going home right away.  In the car the headache got worse and worse, so they all said why don't you lay down and relax or put it back.  So I did, and then I was asleep.  That was a long time and it was quiet.  It was just calm.  Then I heard my husband crying, which was not quite normal for him crying.  I mean crying. Crying. Then my mom was there crying.  My sister was there.  Then the next thing I remembered I guess is called waking up and I had been crying and crying and crying.  I didn't know where I was.  I had no idea, but Phil, my husband, was right there and he said, "You're ok.  You're going to be fine."  I kind of looked where I was.  I still didn't know and he said, "You had a stroke."

Louise

Well, I know that when we were, dad was in the I.C.U. (Intensive Care Unit) for 5 days and I mean you're just, you know twirling your, you can't think straight and at the same time you're trying to figure out what he has.  And somebody who has aphasia and can't talk, you know, we found that somebody has to be in the hospital room with him all day long because if doctors and physical therapists come in the person with aphasia or who has just had the stroke can't talk.  And how are they going to know what he's like or how he's progressed because you don't spend a lot of time with these therapists in the hospital.  And you have this week when you're in there and you're trying to figure out what your next step is, going checking out rehabs.  You don't really know what aphasia is.  It's just a really confusing time and your emotions are skyrocketing as it is, I mean you're distraught.  It's a very serious situation that we don't know if he's going to make it or not.

Jane

Now, I didn't speak at that time and they just one doctor looking to another person talking about me.  They said Jane, Jane, Jane.  Not one person looked at me, Jane.  They didn't ever think that I... Well it seemed like it wasn't important that I was there and it hurt and mad or both or probably other things too.  After that, when it was over, they were choosing if they were going to put me at a home the rest of my life and I couldn't speak.  It was the most terrible feeling that you couldn't say what you thought.  I wanted to scream, but I guess what I did after was I just cried.  If Phil hadn't talked to the doctors again I wouldn't be here.

Louise

I didn't know that my father was still intact inside.  I didn't know that he remembers things.  You know this isn't only until like the last three or four months to know that his personality is the same.  He's got the same great sense of humor.

Bob

Oh cut it out.

Louise

I know.  And at first that I...  the first couple months were really tough because I didn't think he remembered who I was.  It was really hard and I want to say to people that even though they can't communicate with you, they do know who you are.  They do remember everything.

Betty

He just couldn't.  He couldn't say your name, but he... as soon as he saw you.

Louise

Oh, no he.  Yeah.

Betty

But he couldn't say your name.

Louise

He couldn't say my name.  And I remember the first day you said my name.  I remember the first day you said you love me and I remember that it took a long time.

Kate

I'm sure with my daughter, you know, I would call her mommy.  You know, so when I was coming out of that coma it was, I was starting to be 6 months old and then a year old.  And then, this is what I heard, that it takes a long time to get out of the number coma that I was in.  That was really.  That number was, you know, most people don't come out of that.  So, I came out and I didn't realize people were not understanding me, nothing.

Bob

I guess I thought in a matter of time I was going to go right back to I used to be.  I thought at some point it's going to be just as I was forever.

Kate

I knew nothing.  That was the first day it really hit me that my memory was gone.  I lost almost 90% of my memory.

Bob

And he's saying, "Well go ahead, whenever you have it, when you get to it just write down Bob.  B O B, ok."  Ok, so I picked it up and I stilled in my right hand and I said, "Oh my god.  I can't write down Bob."

Kate

The speech therapist she would give me cards, a picture of a cat, of a dog, of you know of any little things and I couldn't guess any card.

Bob

And I'd look at it and I'd want to do it and I couldn't do it.  Sometimes.  And I'd get so mad and cry and push.  And week-by-week-by-week it got better.  Not wonderful.  It was a pain in the neck.  It was yelling and YEAH!

Chris

Especially in practice and over, and over, and over, and over, and over because I talking a little bit, too.

Kate

In the beginning I couldn't really say anything you know because not...  it is for speaking, but it's also the word would come out of my brain.

Bob

Unfortunately with some people and some times I did some, it's you wanted to do it and you tried and it's so damn it the thing you can't remember.  You can't remember how it says it.  And you keep trying to tell yourself and finally they told me, "Don't kill yourself.  If it doesn't work, stop," because I would sit there and I would try and try for an hour and a half looking at one word.

Kate

The writing never came back 100% like I still work with it, you know, so that so some things, you know, like the reading.  Now I can read a page and the next page it's gone.

Bob

Two months, two years ago I could read through all the paper.  New York Times, Globe, local papers.  Zoom zoom zoom boom ok bang. And I've started with zero again.  I couldn't do anything.  I couldn't see what he's saying.  The New York Times, I read those for years and now I look it down and I couldn't, at the funny ones I couldn't do it.

Jane

They said, "Now it's time for you to go home."  And at that time I was like HOME, I was so scared.  I actually cried and said, "I don't want to," even though with the little kids that I have.  I was scared, really really scared, but with my kids and my husband I decided ok here let's go.  I'm going to try.  So, we went home.  It was great but everyone was trying to do it for me because they love me and that's what they were trying to help me, but I know for sure the only way you can do it is, with help, is to do it by yourself.

Bob

I remember when we first came back home and I just said to myself, "Hey pal you better wake up.  If you just sit there watching TV that's what you're going to get."  So I just figured, I know I don't know much of anything, but I'll try what I can do it.

Kate

They transferred me to Hardwick on the second floor and I was a very crazy person.  I wanted to leave there.  I wanted to go back to work.

Chris

Many years and 18 years ago just started going to college and ready to go and have a car accident.  So, it's a little bit mad because I wanted to be a nurse, or a doctor, you know, or whatever.

Louise

When people see someone who has a problem speaking.  They think that they've lost their mind, that they're not intelligent anymore and one thing about people who have aphasia is that they're still intelligent.  They're still the same person inside.

Chris

Many years ago and it's a lots of friends and all the sudden in a car accident and all the sudden vanished, you know.  And going to college and you know.

Jane

After when you have your stroke, people that were your friends supposedly decide they don't call anymore.  Yeah I got five zillion things of flower things when I had my stroke but I don't even... I haven't seen them, period.

Bob

Some of the people that I know see me say 15 a short time ago like they didn't even know who I am.  They don't even look at me.  It's like, "Who's this?"  They're afraid of what happened to me.  They're afraid of me.

Chris

Some is a friends and some is a enemy, you know, just in a car accident, you know, so.

Betty

I think they feel embarrassed.  They don't know what to say, so as a result they say nothing.  And I can really understand how some people feel.  They're uncomfortable and when you're in an uncomfortable situation you want to get out of it.

Louise

It is uncomfortable and it's scary like you said mom.  People might get embarrassed, but to me the feeling that somebody has of uncomfortability can't compared to what somebody has who's going through what my father's going through.  I think people are just afraid because they don't understand what the condition is and I can understand that, but the ignoring part really you know gets me angry.  It gets me angry when people ignore people who have a communication disability or condition.  So I find that it's really frustrating when I hear about from my mother or father, is my father trying to go out socially and the way people the people react to you or don't react to you, and I find it maddening sometimes.  I get so angry because to me people are so unaware and so unperceptive about how to communicate.

Chris

And I have a many years ago I had a girlfriend who broke loose in college and but it's a difficulty because couldn't talk and this is like two and three years ago and still not enough in speech, you know.

Kate

I do have papers in my book that it says, "Aphasia is a communicative disease," you know.  Most people are a little afraid, you know, if you want them to read this.  Ew!  Is this one crazy?

Bob

Now that I can talk better and they start talking to me and I say, "Wait a minute.   Talk to me.  Talk to me.  I'm here.  There's nothing wrong.  Let's talk about it," and they think Oh my god.  But they'll just say they understand that I can do it.  I'm not going to be as good as I used to be and I can't answer it right sometimes, but just relax.

Chris

The family help.  A mom and dad and brothers is ok and my mom and dad and grandfather and grandma.

Jane

Normally I've never spoken about my family at all but I think now perhaps I should.  I got better from my stroke and I honestly believe that my kids and my husband are still hurting from the stroke.  My kids are now over than more than 20 years old and they still cry about it.  My husband occasionally when he does talk about this he cries about it and no ones ever helped the family.  The family is part of the person that has the stroke.

Betty

Well, I'd just say in a nutshell it is a rollercoaster.  He'd be great for 2 days.  When I mean great, he was in a good mood, he was doing his homework and then for three straight days he couldn't do anything and he'd be frustrated and angry.  And those are the worst times.

Chris

It's a frustrating.  So I want to go paint away.

Paintings

Chris

18 years ago I never draw a painting, acrylics, drawing.  So I want to go feel and expressing a feeling.  Not communicate, but a picture you know.

Betty

Like how do you feel now after a year having had a stroke?

Bob

I hate it.  I'm not kidding now, I'm not kidding you.  Made almost zero, almost dead.  Apparently it was almost dead to where I am that's terrific.  Do I like it better than I was before 2 years ago?  I like it a lot better that way.

Kate

Mine will never stop you know this goes on and on.  I think after you are finished your therapy, you know, and have a wonderful speech therapist and when that's all finished then to see a psychologist and when you have that time to sit with a psychologist you'll just talk.  You will talk for an hour, you know, and that really really helped me.

Jane

I had a stroke and I had to go back all and again all at the beginning because I had to walk.  I couldn't speak.  And now I can do that.  I am just thrilled about this.  I'm sure no one could believe the truth that I'm happier now after the stroke.  I have learned lots of new things, most important of other people.  How much I can do just by myself.  It is not an end for the stroke.  It is just the beginning.