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>> Welcome, everybody, to the Spinal Cord Injury Forum.
Tonight we have a great panel of people to talk
about how couples have coped after spinal cord injury.
I do want to say that the forums and all
of our online media content are all supported through a grant
from the National Institute on Disability
and Rehabilitation Research, and so I encourage you to check
out all of our other content as well.
So tonight I have the privilege of talking with several couples,
and I just want to go through and introduce them all briefly.
To my left here, we have Kate and Bruce.
Bruce was injured in 2001 and he has a C6
and complete spinal cord injury.
They were married about 14 years when he was injured
and at the time their kids were 10 and 12 years old,
so...almost out of college now.
Next to them we have Anne and Eddie.
Anne was injured in 1996 and she has a T1011 incomplete spinal
cord injury.
They were married about three years when she had her injury,
and it was a, a third time's the charm marriage for both of them.
Their children from her marriages were already out --
almost out of the house when Anne was injured.
Next to them we have Lan and Laura, Laura --
and Lan was injured actually just last year in 2011
and he has a C6 spinal cord injury.
They've been married about 25 years and their children
at the time were all out of the house,
and they've got some back now.
And last, but certainly not least, we have Joe and Stacy.
Joe was injured in 2004 and has a C4 incomplete spinal
cord injury.
They were married about nine years when Joe was injured,
and their children were two and five at that time
when they were injured.
So tonight, what we want to do is just hear from them
about what their experience has been
like following the spinal cord injury and what I'd
like to start with and maybe I could just start with you Kate,
is I'd like to hear about kind
of what your initial reaction was.
What, what were your initial fears and worries?
What kind of things went through your head when you first found
out that Bruce was injured?
>> Well, first of all, thanks so much for doing this.
I would have killed to have a forum like this to look
at in those early days, so I think it's a, a great idea.
As far as my, my original reactions, the, the main thing
that comes to mind is I'd refused to believe it.
I just absolutely said this is not happening.
This is not happening and --
he was skiing with our 10 year old daughter,
Heather, up at Alpine Tall.
And Chris was an expert skier.
He was I should say far more graceful on skis than he was
on a dance floor at the time and, you know,
it's not an exaggeration.
He was amazing on skis.
And so when the Ski Patroller called me and said
that he got hurt and they were taking him to Harborview,
I went, okay, you know.
I thought maybe he broke his hip or something.
I just couldn't imagine that he had a serious injury.
Didn't even cross my mind.
And it was some hours before I got to go in the little room
with the doctor and be told
that my husband was probably never going to have any movement
or sensation below the level of his nipples again,
and it was likely his hands wouldn't work and, hahh,
so the shock of that moment was just overwhelming.
It was overwhelming.
And my kids were with me
in the Harborview Emergency Room because,
like I said, I brought them along.
I thought he was fine.
I thought I was going to take him home that day.
So, that seems like enough.
That's what happened.
I said, no, you know.
No. Thank you, anyway.
>> Yeah. How about you, Eddie?
What was that like for you to, to find out?
Yours was a little different, but to actually hear
that Anne was going to have a spinal cord injury.
>> Well, it was a little, a little similar because we walked
into the hospital and she had a back problem, back pain,
and took her into the Emergency Room and she walked
into the hospital just fine, and they, and they even asked me
if my wife had a low threshold for pain
because they couldn't find out anything wrong with her,
and basically gave her a bunch of morphine and left her
on the table all night.
And I went home.
I didn't think anything was that bad,
so then the next day I came back and found out that --
from the MRI -- that she was, there was a --
paralyzed below, from the hips down.
So, it was, it was a huge shock, you know.
I never would have thought that would have happened.
And -- but it -- it's -- I immediately made a decision,
though, that we were, we were going to go
through this together, and I was, you know --
told her I was -- we were bound from the hips then from now on
and so that's kind of what we did and it was -- just, it's...
>> Yeah.
>> Try to make through that.
>> Well, Anne, do you want to tell us a little bit about what
that experience was like for you?
>> It was pretty surreal.
Lan was on a bike ride with some friends, and his friends called
and said he had had an accident, and I thought, no big deal.
And so I went down there, and they said they were taking him
to Harborview, and I was like, they'll just patch him up
and we'll be out in two hours, and I was looking at my watch
because I had like an 11 o'clock appointment.
I was like, tchh, we'll be good to go.
And it's a -- in and out -- and then we waited like three hours
and I was like, wow, this is a long time to wait.
And then I finally -- a social worker came and got me
and then -- my friends were with me
and they just said, Lan's paralyzed.
And he apparently knew it and hadn't told me,
because he was apologizing and I was like what's the big deal?
Why are you saying you're sorry?
And he wouldn't tell me.
So that was sort of strange.
And then I just thought he wasn't going to live
because then he just looked like crap.
He got on a ventilator and he was in the ICU after surgery,
and I, I just didn't think he was going to survive.
So after that, he actually lived and I was so thankful
that he actually survived,
so I didn't think being paralyzed was a big deal,
because I thought dying would have really been the pits.
So, I was actually thankful that he was alive.
>> Stacy? How about -- what was that like for you?
>> I guess I was different, of course, from everybody here.
We had two small girls, two and four at the time,
and Joe had been dirt-bike racing,
which is what he had done for many, many, many years.
And he had gone to do this race, end of the season,
and he was Expert Class, and doing well, and I was supposed
to meet him after the race with our two little girls
because we were going to spend some time
in the desert that day.
And when I got down there, I was surprised that Joe wasn't there,
and his friends came up to me, who I hadn't met before,
but I knew had supported Joe in his races,
and told me that he had had an accident.
They thought he hurt his back
and that they'd airlifted him to a hospital.
And we were quite a ways from a hospital at that time.
So someone I didn't know, but I knew, knew Joe,
took my children back home, about half an hour away,
while I took Joe's truck and drove
to the hospital following someone else I didn't know
about an hour to the hospital.
We were living in Southern California at the time.
And I didn't really think anything of it either.
I don't think anybody really --
anybody except for hypochondriacs or wives
of hypochondriacs, I suppose, would think, oh,
this is the big one, because I mean, we're active people.
If we were thinking like that, we wouldn't be as active.
And I had actually thought though to call his sister.
It was Thanksgiving weekend, and his sister happens
to be a rehab psychologist specializing
in spinal cord injury.
So I know something about spinal cord injury just
from my association with her.
And, when I finally got to the hospital and they took me aside
and made me sit down and looked me in the eye,
you know something's really bad is
about to come out of their mouth.
And explained to me that Joe broke his neck
and he had a spinal cord injury
and he was going to be quadriplegic.
It was, obviously, a pretty shocking --
and, of course, the -- I wanted to react
to the whole paralyzed can't walk thing
but the first thing I managed to say was,
okay, is he going to live?
And I went, oh, yeah.
This is totally survivable.
And then it was oh, my gosh.
And he was already on a ventilator at that point
and was not -- they had him very medicated so I couldn't relate
to him, and it was, it was pretty scary.
I was along except for this stranger who'd taken me
there basically.
And I didn't have any family nearby.
So, you know, they took me to Joe who has already in ICU
and he's on the vent and has no idea I'm there or where he is,
and then the nice nurse takes me with a toothbrush,
gives me a toothbrush, and takes me over to the guesthouse
because we're an hour and a half away from the hospital,
and tells me to stay the night,
and we'll see what happens in the morning.
And I'm just like what is happening here?
So surreal.
So, yeah, that was -- it's just a --
it's a surreal experience again I have from exposure just
because my sister-in-law -- who I made the doctors talk to
and I don't have good experiences with HIPPA
because it's so hard for your loved ones to get information
on your condition because of the laws which I know are designed
to protect, but it's a little tough.
But having her explain to me a little more about what she knew
of Joe's injury and what that was going to be
like for us was helpful.
It was a wonderful resource for us.
>> Laura, you had mentioned that, you know,
that part of being in the hospital and kind
of you being the filter for information was tough.
Can you talk a little bit about that?
>> We had immediately people broadcasting Lan's injury,
and right and left the phone was ringing off the hook
at the hospital.
I had to turn off my cell phone.
The nurses were getting really mad.
There was a flurry of people going in and out
and everybody wanted to know if Lan would be okay.
Could he walk?
What happened?
And we were exhausted trying to --
and people were just hysterically upset
and they were -- come just in droves coming
up to the hospital at times.
And it was exhausting and demanding.
And finally my son flew in from college and he's just
like what is going on?
This is crazy.
And he just helped and we put a sign up on the door
and turned off our phones
and then we started the Caring Bridge website
to -- that helped a lot.
But it was just nuts.
And emotionally, Lan and I were just exhausted.
They wanted reassurance that he would be okay.
We're like, well, not really.
So it was just very demanding.
>> Yeah. Can -- you had talked about, a little bit
about how much all the support really helped,
and actually, all of you did.
You've all shared about how much the support helped.
Did you have a similar experience, though,
of trying to figure out how to manage information
and at what point did you kind of share that with Bruce.
Because I know, Bruce, you were pretty, pretty ill at the time.
Yeah.
>> Well, we were long time members
of Plymouth Congregational Church which is just
down the hill from Harborview.
So, it happened that his injury was on a Wednesday,
and on Wednesdays at that church there's like children's choir
and some adult stuff that goes on,
and so our kids had been part of that for a long time, and the,
the women who I called -- the church --
I was on staff at the church at the time.
I was doing youth ministry, and so I just called them
to tell them that Bruce is at the hospital,
and I was going to go up there.
And so they sent the parish nurse up there.
And I think that's why I got to avoid that situation
because almost from the get-go
like professionals were involved in our situation.
The nurse came up and she took the girls back down
and so the news went really fast into our community, right --
at least our local community and again, we made some phone calls
to family and stuff, but it didn't feel ever like I needed
to manage those people.
Like, you know, a coup...
-- some five or six people showed up at the hospital
that night and they said, "Okay, what do you need done?"
And I remember that.
It was all I could do to think, okay, the girls.
The girls have to -- I don't know.
Someone needs to be at the house.
I don't know when I'm going to get home, you know,
that kind of just basic stuff that you cannot get your head
around in that situation.
And so people just took that from me, just took it.
What I, I heard you say that just like reminded me
of what this is, is people wanting comfort from us, right?
People showing up and, you know, needing so much to hear
that everything was going to be okay, and it's like,
I can't even look at you.
I don't -- it's not my job to make you feel okay
about this right now, right?
So, if ever anybody needs advice,
that's my first piece of advice.
To someone who, you know, knows someone who's in this situation,
please don't expect them to take care of you.
Like just get over yourself, right?
They have other things to think of.
>> Yeah. Anne and Eddie, did you deal with that as well,
of having a crush of people who wanted
to know what was going on, or was there --
or were you able to kind of maintain that a little bit more?
>> Well, yeah, to some degree.
I mean, the -- there was her --
my family doesn't live in the area, so --
except for my son and daughter.
And so, yeah, her parents and, and brother were asking a lot
of questions and all that kind of stuff.
But they were, they were pretty considerate about it.
They weren't pushing me that much.
My sister came up and helped, and we had friends that,
that helped us a lot, and [background conversation]
for the most part it wasn't too bad, you know.
There wasn't that like --
experiences like these people are telling.
So...
>> Yeah. One of the things, and I'd like you all to speak
to this, is kind of the support that kind of came up,
because I think that was something
that was really important for all of you,
is how much support you received from kind of friends and family.
So, the question was talking about support.
Did -- Stacy, do you [snapping sound] either Joe want to talk
about kind of the support you guys got
from friends and family?
>> I just did -- I had almost forgotten
until you two were talking about it, about that,
that wonderful crush of friends that, unfortunately,
did demand -- they -- of course, they didn't realize
that they were demanding.
And they wanted us to say, "No, he'll be okay.
No, you know, he'll walk again."
And in my experience with Joe being in the hospital for many,
many months, no doctor ever looked at me and said,
"Your husband will never walk again."
I mean, they're not that dramatic.
They usually are, you know, look, this is the injury
and these are the chances, and you know,
this is the reality of it.
But it was pretty darned clear that chances
that Joe would walk again unassisted were pretty slim.
And the reality is he's quadriplegic.
That's a big, big life-changing deal.
But people really do somehow want it to be different.
They -- and the sadness is
that it minimizes the pain you're going through.
When people want it to be okay, when people are like --
had a really good friend whose --
it was just before Joe is going in to do next surgery
to put the plate in, you know, to repair the break -- now it --
they're like, "Oh, okay.
So they'll fix it then."
The nurse said, "No, they can't fix the spinal cord.
It's the spine.
Yes the bones, but..."
I -- when people do that to you, they take away your right
to grieve that loss of ability and that person's role
in the family, and, you know, we have these tiny children
that were totally attached to daddy,
and Joe was incredibly outdoor active and independent,
incredibly independent, to the point of annoying you.
[Laughter] And, the only thing he worried about when he learned
about his injury was, the only thing was,
are the girls okay, and, oh, my gosh.
I'm not going to be able to pick up my little girls again.
So, to not be able to have someone really get
that with you, and to realize what an incredible loss that is,
it's, it's hard because you feel like you're being the ***
by saying, "No, he--
no but chance is he is not going to walk again.
He's..." You know, it's like I'm this negative Nellie,
but I'm just trying to deal with some reality here and come
to terms with that, and I think you need your friends
to be able to get that with you.
And, even though they were amazing, amazing --
people you didn't even know cared,
crawling out of the woodwork to help
and provide and be generous.
But, I do think that by demanding to see the person,
wanting updates -- ironically Joe had injured himself
in a ride that was called Riders Helping Riders,
and it was a benefit ride for people
who had been injured racing, racing dirt bikes.
>> [Inaudible]
>> And...
>> I did contribute back.
>> Yeah.
>> A little bit.
>> Yeah. You got your entry fee.
>> I got my entry fee waived...
>> Basically.
>> Yeah. I was getting...
But the gal wanted to help so much.
I mean, she was pissed that I wasn't returning her calls.
Okay, now, imagine.
My kids are two hours away and my husband is in ICU
and I'm trying to figure out what's going on,
and she's not -- I'm not returning here calls.
I don't even know her.
Because they wanted to give us money, and what or, you now,
what could they do for us?
I'm like, I don't even know yet.
I don't know.
So I just remember that pain of, you know, being so glad
that there was support and yet feeling lonely, too,
in trying to get these folks to understand that, you know, one,
I need you to get that this is more about Joe walking.
You forget, you know, who cares about that right now?
And, two, you know, we are still in the throes
of figuring everything out.
Please don't demand that I tell you how to help.
[Silence]
>> Go ahead.
>> Yeah, to this day, I still have trouble with explaining
to people what a spinal cord injury is,
because they don't understand that it's permanent
or should be permanent.
And they all go, "Well, I, you know,
I injured my finger and the nerves...
>> [Laughter]
>> They, they grew back.
>> Yeah. I know somebody who broke their back...
>> Who broke their back?
>> ...and they -- and they're doing fine now.
It's like...
>> Yeah. And they're just like almost like,
no, you're, you're wrong.
You know. She's going to be fine.
What are you talking about, you know?
And it's, it's really hard to, you know, keep explaining
and to keep telling them,
trying to tell them what a spinal cord is and, and,
and all that, because they don't understand.
They really don't.
>> Did you have that experience too, you guys?
>> Well, I'm thinking.
I -- in some ways, some of my experience -- I mean I had --
yeah, a lot of that, but I spent
about four years recovering and learning to walk.
I spent a year and a half fully in a wheel chair
and just spent the, you know, years of therapy and working
and kept pushing, and one of the things I'd get from people
when they'd come up to me and say,
"You're such an inspiration," you know.
Or whenever -- and I, I'd feel like almost
like -- a similar thing.
They were projecting their own insecurities and fears
and their own guilt about not exercising enough onto me.
And -- sometimes, yeah, it was really --
that really -- and it still happens.
>> I don't want to...
>> And they look, and they look and say, "Well, you know, yeah,
oh, you know, you walk and do this."
But, you know, I, I have a spinal cord injury.
I have, you know, I do walk
but I have all the other complications, you know.
They're, you know...it's -- and --
>> And it's not like everybody else isn't working to assist us.
>>... and, and, and it's a lot of [inaudible].
And -- yeah, people...
>> I was just going to say I don't want to take anything away
from all the hard work you had to do to get to where you are,
but that's just not an option for many people.
>> I know that.
>> You know --
>> Yeah.
>> You happen to have an injury that allowed that,
and every injury is different.
I mean, Joe shouldn't be able to lean forward
like this at C4, but he can.
And, you know, it's, it sort of makes you feel
like if you try hard enough, you'll be able to walk;
and if you can't, you didn't want it enough.
And that hurts, you know, when you get this,
if anybody can do it, you can.
>> Right.
>> Well, does that mean if I can't, that I'm a failure?
What, what does that mean?
>> Well, Kate, you had talked about that, too.
How hard that is to, for both of you guys, to deal with that
because you know that Bruce is lucky.
>> Bruce is incredibly lucky.
He has what passes for luck
if you have a spinal cord injury, right?
This is what it looks like.
So when people say that, and they do,
people say it all the time,
and I know that there is an impression out there that,
you know, if you just gave it your all or something, you know,
things would change and so the, the, you know,
because they don't always say it,
but I know they're thinking it.
I will often offer this, you know, just randomly.
Like it's not because he tried really hard.
He did, of course, like killed himself to do this.
And, may I say, it cost a lot.
Like it's so expensive to go get quality physical therapy,
and so, you know, we were lucky that way, too.
And, you know, he got accepted in a clinical trial
that led him do suspended gate training
when that was really new.
I mean, he had every freaking advantage,
and he had axons, right?
All that stuff could have been in place,
and if his axons were not firing,
it wouldn't have made a bit of difference.
So, you know, being able to say
that in public is a big deal to us, so, thank you.
It's really true.
Hard work doesn't always pay off in this world.
>> Thank you.
So, Anne, when you and -- when you were injured in,
in the hospital, you are the longest injured person
on our panel today.
And I know that your experience
and rehab was a bit different than other folks.
How long were you in rehab?
>> Almost four months.
Which today, by today's standards,
it [inaudible] would be, what, two weeks or something?
>> Maybe three.
>> There goes my life -- because, I mean, you can't --
you can't wrap your mind around your injury.
>> Yeah.
>> So, on time.
>> Yeah. When you were in the hospital, what was that like
for you guys to, you know, to be separated in the hospital
and kind of working on rehabbing and having everything kind
of happening at home without you?
>> It was -- I, I was lonely for Eddie.
Eddie is my best friend and I really missed him a lot and --
but they keep you busy in rehab.
They -- I mean, they tell you
when they do everything, literally.
So they keep you pretty busy, but I,
I really missed Eddie a lot.
It's very lonely for him.
>> Yeah. How about you, Lan?
You and Laura.
How was that when you were in the hospital and in rehab?
>> Well, I, I was fortunate in, in that regard,
in that Laura was there virtually every day,
and actually for -- spent the night most times, so she was,
she was around quite a bit.
We had friends and, and family who had taken over our --
her house and were working on remodeling the, the home, and,
and so Laura, Laura was around all the around,
and I didn't have to feel separated from her.
And looking back on that -- those, that was really great
and I think reassuring to, to both of us that, you -- -
we, we sort of held each other up quite a bit during that time.
>> Yeah. Now, Kate and Bruce, you had a little bit older kids,
but how did you manage that?
Because with kids at home, and I'm both --
ask Stacy, too, but how did you manage that?
How did you manage kind of being there with Bruce, and Bruce,
how did you manage not being home with the girls and kind
of trying to negotiate that?
>> Our kids are awesome.
I just say that.
They're, they're almost 22 and 24 years old right now,
and even at 10 and 12 they were amazing, like young people,
and I had made a commitment.
I was going to be at home every day when they got home
from school, just like I used to be before he got hurt.
I was going to do that no matter what.
And it took a lot of coordination and help from,
you know, people at the church and family and other friends
who just, you know, made sure.
Because he couldn't be alone, that was the problem.
He couldn't breathe for a long time.
They had damaged his vocal cords when they did his surgery,
and so, he was, you know, not able to eat or drink and was
on a stomach tube and only had a whisper
for 10 straight weeks, right?
So, so, it wasn't safe, really, to leave him by himself.
He would -- he couldn't help himself.
He couldn't even ask for help, right?
So I would go home.
I would spend the afternoon and the evening with the girls,
and then someone would come over and, when they went to bed,
I would go back down to the hospital and help him get
down for the night and then I'd go home
and in the morning see them off, go to the hospital, you know.
We just did that for months.
>> What was that like for you, Bruce?
>> Well, it was -- in many ways,
I was suddenly cut out of their lives.
I just was like no longer their dad.
I was a blob in a bed, and it was, I guess, really,
incredibly painful to, to not deal -- when you just did --
our relationship changed dramatically.
And, so, they would come and visit, you know,
some of the time, not every day.
And I'd try and make things like as normal as I could.
I -- there was a little part outside the room
that I called the living room.
There was a chair, [inaudible] sitting also.
Let's go out to the living room and sit, you know,
like they'd have to, you know -- the nurse would have to get me
in the wheelchair and the whole -- not whole -- routine.
But I'd just make some little attempt to have things be normal
and there also is -- I just have said I think some of the nurses
at Harborview also were just --
there was just some amazing people.
And I'm thinking of one guy named Bob who had always --
just joke with them and ask them if they'd done their homework
and give them homework to do and other stuff, and it was just,
you know -- that was small help, but, yeah, it was hard.
>> [Inaudible]
>> So, Stacy and Joe, you guys were like almost two hours
from home and you had these two little girls.
How did you manage and how did you manage --
can you talk a little bit about the whole move up to Washington?
>> Well, like Anne, we had a, a wonderful church family
that we relied on since I didn't have any other family and Joe...
We were living in Southern California.
Joe's mom and brother and what have you living in Kansas,
which is where he' from.
And my mother and sister -- my main support was in New York
which is where I'm from.
So we, we had some great church family and the --
also the dirt bike riding community was really supportive.
Joe had been working for the Forest Service for a long time,
overseeing the maintenance of OHB trails and volunteers
and also participate actively in discussion boards online
and was pretty well-known.
He was a ATV Safety Instructor and so they were supportive.
But my mother-in-law flew out, you know --
people flew out to see us quickly, and everybody,
you know -- Joe's sister, the rehab psychologist,
is in Springfield, Illinois, and so she got
on a plane and came out.
My sister, my mother, his mother, his brother...
>> They all took, they all took turns watching the kids
and Stacy -- and, well, they had -- we were in --
Palm Springs is where I did my recovery, and they've got a,
a guest home right next door where -- which was free --
or, no, it wasn't free because it was not free [inaudible]
>> No, it, it, it became free to us.
>> It was free again through support of friends.
>> Through an anonymous friend who...
>> Yeah.
>> ...just paid for it.
>> But Stacy and the girls were able to stay sometime.
But then they could shuttle back up to home
and there were some version of family there to take care
of them, so we sort
of patch-worked it all together, keeping them covered.
>> But it was really your mom.
>> Yeah. And luckily they weren't in school, so --
they didn't go to pre-school.
But yeah, my mom, yeah, my mom came out and lived with us
for close to three months just helping out 'til,
almost 'til the time I came home.
And then the move -- Stacy was phenomenal.
I don't -- I mean -- and she got a job
in the midst of all of this.
So, I'm injured, we sell our home, we move,
we buy a new home, and Stacy gets a new job,
all in the course of four months.
And I'm laying on my back in a bed through all of this.
So, I, to this day, as you can imagine,
don't understand how she was able to do that.
But it was, it was phenomenal.
And, yeah, the supportive friends, the church,
money and time and effort that they put in, you know.
Even the what?
the Realtor sold our house for no commission.
Just -- yeah, people came
out of the woodwork, so it was phenomenal.
But, crazy.
>> But I will say it was, it was hard because I did have
to shuttle a lot between our home in Big Bear
and Palm Springs and it -- that's a mountain there,
and the reason we're here is because we lived at an altitude
of 7200 feet in a rural area, and, you know,
it took Joe six weeks to get off a ventilator, so we're thinking,
you know, that's probably not a good place for us to live.
And there was, you know --
we needed to drive well over an hour
to any major medical facility living there,
so we knew we just couldn't do that, and the cost of living
in any place we would live
in Southern California was beyond our reach.
Joe's brother and his wife and their family live
in Woodinville, and we just thought
that Seattle area made the most sense.
Springfield, Illinois, nyah, you know.
Joe's sister, but no other relatives there.
Wichita, Kansas, no.
[Laughter] You know, my mother and sister in New York City,
possible; except Joe said no.
[Laugher] But Seattle, you know, seemed like a reasonable cost
of living, great opportunities, you know,
housing market certainly more affordable
than Southern California, and we were,
we were just blessed all the way through.
Joe's brother's wife's sister [baby crying] passed my resume
around and next thing you know I got a call from a couple
of recruiters including Microsoft, and, you know,
two flights to Seattle
and 14 interviews later I got a job offer.
So, so trying to do all that while Joe's in the hospital
and selling the house and, you know,
trying to make sure our little girls didn't forget who mommy
and daddy were, you know.
That, that was something else again.
But they were, they were great.
Kids are, you know, pretty malleable.
They -- our two-year-old didn't understand what was going on.
Our four-year-old got it surprisingly well,
and was great, and Joe was great with them.
Just always has been.
>> Yeah. So, I'm, I'm curious a little bit about the transition
from -- I think I'm going to paraphrase Kate's words of,
you know, from the patient to -- back to the person.
How long did that take, and since I'm using your words,
Kate, I'll start with you.
How long did it really take for you to really switch
from that kind of hospital-level to back home
to viewing Bruce no longer as somebody who has ill
and needing assistance, but really back to being Bruce,
back to being your husband?
>> Well, He was injured on the 7th of March, so we're just,
just finished marking the 11th anniversary
of this injury, right?
And the other thing you should know is I wrote a book
about this first year, which is called Some things are
Unbreakable and there are some copies for anybody
who wants them in the back over there.
Just take them.
So I have the dates very clear in my mind
because I wrote this all down, right?
So I know he came home the 3rd week of May, very ill
and debilitated and unable to even just sit up by himself,
get dressed, take a show -- nothing.
He was, you know, still completely dependent
and definitely a patient at that point.
Through the summer he started, you know, to be able to like eat
and manage his life a little better.
We did have some outside help come in.
In the fall, here's how I marked this story.
In the fall one day, it was pouring outside, pouring rain,
and I like remembered that he was going to call the roofers
to fix our roof which needed repair the summer before, okay?
And he hadn't done it.
And making phone calls was one
of the few things he could actually do, right?
without any help from me.
So, he was going to call the roofer
and I was sort of mad at him.
I was driving him to rehab and saying, you know,
did you call the roofer?
No, you know.
I'll do it later.
And I was like so angry.
I was just so angry.
Why do I have to do everything, right?
I also have to do everything myself and gurr.
So, he's like, I'll call him later.
And we were going -- he's going to rehab.
I was going to see my therapist who said to me,
"Why do you have to do everything?"
And I went, "Because he's paralyzed, you dummy."
Like... and he's like --
he said, "Well, why don't you just see what happens
if you don't."
So I didn't call the roofer.
And by Christmas the roof really was in bad shape.
And so when I -- the kitchen ceiling fell in.
[Laughter] This actually happened.
[Laughter]
>> Did he call?
[Laughter]
>> It was a spectacular mess.
[Laughter] And what I did right after that happened is like,
went to the door of our bedroom and looked at him and the girls
and said, "I am not cleaning that up."
Like I'm not doing it.
And, and that was the moment for me.
So, Christmas, almost nine months later, right?
And I'm saying, "Okay.
He's my husband.
He screwed up, he can deal with it.
I'm not doing it.
I'm not." And then I was his wife.
And I was able to like be mad at him and laugh at him
and you know, whatever, be married to him instead
of worrying about taking care of him,
which is the hugest breakthrough.
It was awesome.
So...
>> How about you guys, Anne, Eddie?
At what point did, did it switch from kind of --
or did it ever unswitch?
>> Well, we had two major family crises happen right
after I was injured that were huge.
So we were dealing with those and that went on for a while.
And then we remodeled our house while we were living in it.
We had -- took the roof off in the middle of winter
and added a second floor because we couldn't --
you know, the lot was something we couldn't go either way.
So -- and we put a chairlift in so we added a --
our suite, I guess, upstairs.
So we were dealing with that and I always told people --
I felt sorry for myself for about three years,
and then after that I just kind of woke up
and started living again.
I went back to school, yeah.
So, for me, it was around three years, so I'm kind of slow.
But I -- what do you think?
>> I don't know.
I never really felt patient.
You know, helper-type relationship.
I always felt it was Anne, and she was always willing to,
to do, you know, more than her share.
So I don't think that ever really happened.
Of course I made my -- because of the level
of her injury and everything.
But, it's -- we've always had a, you know,
a really good [background paging] friend type --
friend/husband/wife relationship.
>> Lan, how about you and Laura?
Do you feel like there was a change
or shift [background paging]
>> I simply -- we're the, the newbies here
in the panel, in the group.
So, we're just -- just about a year now, and I,
I think we're still very, very much in transition with that.
I, I know Laura is very much into care giving and, and I --
I'm committed to keeping her [laughter] removed from that
as much as possible, but she, she, she's actually pretty good
at it and -- no, I think in some ways she doesn't mind it.
She would even say she enjoys it, you know, which is okay.
[Background paging] Some,
some of the time I just don't want her to overdo it, but I, I,
I think we just have kind of a bLand and she's able to do both.
She's able to be a caregiver and a, and a spouse
at the same time, and shift gears pretty well, and so --
and, and then we're, you know, we're growing away from this --
growing away from the, the injury,
you know, in, in due time.
It takes time and each day and, and month that goes by, it,
it's seems a little further away.
>> Okay. That's fine.
>> It is helpful not having small kids.
I'm just amazed.
You guys must be -- whatever she's drinking I want some
of that.
[Laughter] I bow my hands down to people with small kids.
I mean, my kids want their clothes washed
and I'm like, hah, really?
[Laughter] So I just got -- I'm very fortunate, so...
>> Yeah. Joe and Stacy, what, what about you guys?
That -- how long did it take to, to shift away from kind
of the patient role into being more of the spouse role?
>> Were we supposed to have done that by now?
>> Oh, maybe not.
[Laughter] You don't have to.
It's not required.
>> I, I will tell you that my biggest, I guess,
complaint about Joe's rehab was that [background paging] even
in making the transition from rehab to home,
the doctors were talking about Joe as a patient.
And I am not a natural caregiver.
I'm -- you know, I love care-giving for my children,
but they stress me too.
And I don't like doing the caregiver stuff.
I do it, and I try to do it well with Joe,
but that's just not my personality.
And I didn't like that the doctors didn't treat Joe
as a husband, a father, a person first, and just expected that,
okay, well, our lives will now revolve around Joe's care.
I don't -- I just couldn't accept that,
and I didn't want Joe to accept it either.
So, I think, pretty quickly when Joe got home, we had caregivers
in place and we had, we had heard that that was important,
and that you really didn't want to try and rely on one caregiver
because that was really too much to ask of anybody.
So, get a bunch of part-timers.
Ahhhhh. I mean, it just made so much sense to us, and,
and that really did work well for us.
And we had Rehab Without Walls that came to the home with Joe.
But even still it didn't feel like he was a patient
and that's probably because I just didn't want
to accept that reality.
But, yes, I mean for a long time your life does revolve around,
you know, well, how long will it take daddy to get
up into his wheelchair before we can go do something?
Or, you know, we didn't invest in a handicap accessible van
for months, which was a mistake.
We got it and went oh, my gosh.
What were we thinking?
You know we bought a used one, and it was like I don't know,
seven years old when we got it or something.
And seven years later we're driving it.
It's totally basic, you know, just -- but it's transportation
and it is the new family vehicle, and thank God for it.
But, I think we owe is just we're thinking how can we
integrate Joe back into life.
I mean, life Bruce.
You know we didn't want to leave Joe on his own.
The children never had any other caregivers but mom and dad.
Joe was a stay-at-home dad at the time of the injury.
So suddenly they have nannies because --
and I do say nannies because trying
to find someone appropriate
who is reliable and -- that was hard.
I'm going to work full time outside the home,
which I had an office in my home before and it was huge changes.
And we needed an nanny to come in for the kids
because we figured well, then, somebody can kind
of keep an eye on Joe too, you know.
But it all worked.
I mean, miraculously you get through the first year, okay.
Okay, that was the first year, okay.
And then after the second year,
you go okay, this is much better.
But I really think it takes a good two years
to feel like you're...
>> You can re-establish the new normal.
And, even today, I mean I'm still changing
in small ways personally to me injured, but I think the --
yeah, the first year, for sure, was just the biggest adjustment.
And then things start to fall into place and you get a routine
and you know this is what we can do
and these are the things we can't do, and it starts
to delineate a little -- a lot better.
But, for sure, the first year, maybe two,
you're still trying to make it all work.
And I think that's everything, whether it's, you know,
you're talking about patient/person, yeah,
I don't know when that -- there wasn't that transition,
but I guess for me just as an individual, the transition
between just being injured and then now living with the injury
and then being normal with the injury, you know, that's,
from my perspective anyway, that was the big transition phases,
and when exactly those happened I don't know,
but they're pretty blurry and some of them are still on-going.
>> I will also just say that we learned the vast majority
of what we rely on for everyday living
from other spinal cord injury patients, other quadriplegics,
much more so than what we learned in rehab, in rehab --
and you know, hey, that was seven years ago.
I don't know what they're doing up there now.
But, at the time, it was like, oh it will take him three
or four hours to get ready in the morning.
I'm just like, oh, my goodness.
How are we going to do this?
I thought, hey, kids and work, how, how,
how am I going to do this?
And, you know, we meet people and they're, oh, no.
That's ridiculous.
You know, an hour.
Really? All right.
Yeah. Pretty much.
Cool. And of course, we do have somebody that comes
in every morning except for weekends,
and gets Joe ready to go.
And he can boss her around because I don't
like being bossed around.
And he has the right to have somebody do what he needs them
to do.
And so it's great.
I think that really helps our marriage, too, you know.
This couple was saying, you know, I don't --
I'm caregiver, I don't mind doing that.
I like doing that.
Whatever it -- as I said, it's not me, but he has the right
to have someone pick up things when he drops them,
or adjust something, or put something away, or, you know,
put his clothes on just the way he wants them, and, you know,
for us having somebody else to do that for him is just huge
for our relationship because, you know, I do that.
I absolutely do that for him.
But keeping it to a minimum really helps us feel more
on equal footing.
I, I just think it really, you know,
to not be the same person that's doing his toileting as is,
you know, parenting our children together.
It just -- it helps.
>> Yeah. Well, I think everybody's kind
of different about that...
>> Yeah.
>> ...but it's good that you've worked out a good system.
In terms of that -- I mean in terms of relationship
and marriage, how do you feel like --
start with you Anne and Eddie, what do you think this has done
for your marriage, this injury?
I mean you were injured in the first three years of your,
your marriage, and so, really,
a lot of your marriage has been with your injury.
What, what do you think this has done for your marriage?
>> Well, I think it's made it very, very much stronger.
The bond is, is a lot stronger.
>> What do you think, Eddie?
>> Oh, definitely.
You know, we, we're much tighter now.
We just -- I mean, we, we were always best friends and where --
we'll still -- will be best friends forever,
but I mean we just -- this has just bonded us completely.
>> Yeah. Can you talk a little bit about the band?
>> Oh.
>> Up. We'll before I was injured we had a band,
blue thing, and it didn't really go anywhere,
and then after I was injured -- what was it?
2004 we started?
>> Something like that.
>> Yeah. We formed a band called Raven Blue
and I wasn't the lead singer but I was -- I did some leads.
And Eddie plays bass.
So we have a lot of fun with that.
We did fairs and festivals both and it was a lot of fun.
I miss it.
So, Eddie's still playing in bands.
>> Yeah. But it sounds like that's --
the music is one thing that really has been connecting
for you throughout that whole time.
>> Well, it always has.
>> Got you together on the front end.
>> In our relationship -- the way we met was through the Week,
The Seattle Weekly, and...
>> And she didn't want to enter that.
>> Yeah. [Laughter] And so my ad --
the, the headline for my ad was "Music Stirs my Soul,"
and that's what caught Eddie's eye.
And so music has always been the glue in our relationship.
>> Okay.
>> And we're talking
about getting a duo together again, so...
>> Excellent.
>> Yeah.
>> Lan and Laura, how about you?
What, what do you feel like this has done for your marriage?
Has it...?
>> Well, in...
>> ...had an impact?
>> ...initially, you know, in dealing with the, the injury
and all the physical changes, the --
it was, it was quite a shock.
It wasn't, you know, the --
it came at a time that the kids had moved out and we thought,
hey, we're going to have some fun, you know, for, you know,
we'd always had kids because we had kids
from previous marriages, too, and so it --
we were really looking forward to, to that time and, and so I,
I think there was, wow, now what?
And, in, in the course of all that I think we,
we did find it a new commitment, a new level, and a new closeness
that turned out to be, I think, pretty,
pretty special a lot of the time.
And it, it's been very, very affirming.
So, it's, it's good.
>> That's great.
Laura, did you want to add anything?
>> Well, you wouldn't want to go through something like this
for a better marriage, but I hope just [laughter]...
>> You wouldn't recommend it.
[Many speakers, inaudible]
>> Sounds horrible but I think there is a renewed relationship
that is -- you cut all the crap about complaining
and you seek a clarity and you have a common commitment,
and when you come home and say oh, crap, what a crappy day,
and then you look at your husband and he's like excited
to see you and you realize what's really important.
And so I think there's definitely a better marriage
and a deeper level of love.
>> Yeah. Has the ways that you guys stay emotionally
connected changed?
Are the -- you know, the things that you do together different
or has that been -- or have you just found the same things still
connected to each other?
>> Well, obviously, no --
we don't do the same things that we used to.
>> Right.
>> We used go, go bike riding together and,
and now she goes bike riding
but I make her tell me about it and...
>> Right.
>> Dr. Crane thinks that somewhere out there there's a,
a hand-cycle tandem that we're going
to get on one of these days.
So we'll, we'll look, look to that down the road.
But in the meantime, we, we go shopping.
Somebody convinced me that this manual chair was a good,
good place to start, and so she goes to shops
and I go pushing myself around the mall and having fun
and so we, we find things to do.
>> Excellent.
Kate and Bruce, how about you guys?
>> Well, yeah, I think in -- over time we had,
we had some struggles and some tough stuff, but we --
well, one of the things -- well, I think in the first year
in our family each of us had our own psychotherapist
and then the guy that Kate was talking about,
we went to see him together for a while.
I think about a couple of years anyway.
And it -- in some ways my injury and the stuff happening
between us around that became, you know, well,
working through that became like the crucible
to make our marriage better.
And, you know, I think we've really, we really were able
to come a long way through that.
But without, without that help, I just -- yeah.
>> He would have kicked me out.
[Laughter]
>> No, no.
She would have kicked me out.
[Laughter] The ceiling was just the beginning.
[Laughter]
>> I don't know.
I, I should have said this in the beginning.
When the thing that I said when they first told me
that he's never going to walk again, he probably won't be able
to use his hands, he may have to be on a vent, is, is this.
Everything that matters about him is still intact,
which I still believe, and was always true.
Like it never even [background voices] for a second occurred
to me that we wouldn't get through it.
All the therapy and all that stuff was
because I wanted my sense of humor, right?
I wanted to still be myself somehow on the other side
of this, and I could see that there was going
to be another side of it.
I mean, it was just hellish for such a long time.
Not interpersonally between us so much as just, you know,
so overwhelming to take in what's happened to your life.
I mean it just was incredible.
So, I wanted to figure out how to still be Kate, not, you know,
necessarily just like I was before,
but able to still be happy and see, you know,
the world the way I saw it.
I wanted to hold on to that.
So, yeah, we did a bunch of therapy.
And we did stuff with this guy who was amazing, who is just --
would never let us off the hook, would never, you know,
let us like pretend that something was okay
that wasn't okay, right?
We worked really hard with him and it paid off.
It was a good thing.
So...
>> Let me...
>> Oh, go ahead.
>> [Inaudible]
>> No, that's all right.
>> ...just say a few words.
Is, was, is a big thing for us, too,
because we're always kidding each other a lot, and she's,
except for rare occasions, has pretty much maintained her sense
of humor, so we were always joking
around for sure, you know.
That's the stuff that we do every day, you know.
>> Yeah. Stacy, you mentioned that earlier, too.
How about you guys in terms of the marriage and,
and how you have -- how that's changed
or grown or been different.
>> I think -- I mean, I don't think our relationship
as husband and wife has changed.
I think -- I mean, this is my perspective.
Stacy can say what her perspective is as well,
but to me, we've just -- we were always serious
about our marriage, you know.
That was the thing.
We're married, we're going to have kids, you know,
this is something we're doing together, and when I got injured
that was a big bump in the road, but we were going
to stick with the road.
And I don't think either one of us ever concede the --
oh, we're out of here, you know?
So in that regard, it was just her and I continuing
to be a couple through whatever came along.
And, you know, to this day, of course, we still argue
and have our problems and issues, but I think a lot
of that still's the same, so...
I'm a different person because of the injury,
and the way we relate to each other because of
that is different, but I think a lot of the before
and after is still the same, if that makes sense.
>> Right.
>> Before Joe's injury, we had had a lot of stressors.
Joe was not liking being a stay-at-home dad,
and there were just, you know --
I think as somebody else mentioned,
just that your everyday complaints and what have you.
And the injury really put things in perspective for us,
like what were we thinking?
Why were we complaining about these stupid things before?
And for a long time afterwards, I would hear
of couples arguing about, you know,
what color the new car should be or, you know,
just all these things.
I'm like, seriously?
This is what you're worried about?
I can't hold my husband's hand anymore,
and this is what you're worried about.
But I -- you know, I've learned --
and it's taken me time because I'm --
patience is a struggle for me --
that everybody has their own limitations, you know.
I have a neighbor that put in a new fence between us and she --
we're talking about the gate that they were about to put in,
one on her side, one on my side.
She said, "I just don't know which way it should swing.
I, I can't sleep."
[Laughter] "I have been losing sleep over this."
And I just said, "Okay," calmly,
"and your life has been way too easy [laughter]
if you lose sleep over which way the gate should swing."
You know, I', I, I'm worried about nannies for the kids
and the caregiver who just quit, and, you know, trying to get
to work and, you know...but, for us, it really put us
in perspective, and we became much closer
in those initial weeks after the injury, just sort of --
it was a wake-up call, you know.
And it's sort of like, okay, what's really important, guys?
You know, this is it.
What's really important?
And it just -- it wasn't a question like, well,
[guttural sound] yeah, we're in this.
And we did feel much closer, and I've told other people,
"We've had bigger stressors
in our relationship than this injury."
So, yeah, I would, I would say we're,
we're closer in a lot of ways.
Joe definitely -- he went
from being an independent Oregon *** to kind, gracious...
>> It wasn't that extreme.
[Laughter]
>> Yes, it was.
[Laughter] But, you know, it just -- it's --
he is just the kindest, gentlest person, now.
>> No, I'm not.
>> Yes, you are.
[Laughter]
>> Go ahead.
>> And...
>> Don't say *** like that about [inaudible].
[Laughter]
>> He's got a reputation to uphold.
[Laughter] We use humor to the extreme, to the point
where it makes other people uncomfortable.
>> Yeah. [Laughter]
>> You know.
>> It sounds like that's a...
>> And they're just like oh, my gosh.
[Laughter] She said that.
You know, I remember being
in our financial planner's office and, you know,
we're dealing with some stuff, and the planner looks at us
and says, you know, "Well,
I think you could probably use some more life insurance
because, you know, God forbid, the unforeseen happened..."
And Joe went, "Really?"
Unforeseen things can happen?"
[Laughter] And he just kind of looked at Joe like, ha,
ha, haha, ha, you know.
But we make those kind of morbid jokes all the time, you know.
One day Joe's brushing his teeth and he goes, "Stace, come here."
"What's wrong?"
He goes, "My hand, it's not working."
[Laughter] "Like, really?"
"Yeah. I just -- I can't -- it's not moving right."
"Honey, you ought to see a doctor about that."
[Laughter] You know.
Every once in a while it sort of strikes him like, wow,
I am really messed up.
And one time I'm putting him in his chair and he kind
of made this groan sound.
I said, "Are you okay?"
He goes, "No, I'm paralyzed."
[Laughter] You know, it's --
but it is like we laugh heartily all the time about this stuff
because that's what makes life.
>> Yeah. It sounds like that's a common piece of advice,
is find your sense of humor.
I'll just start here at the end.
Kate, what advice would you give to somebody
out there who's newly-injured or, or their spouse and...
-- what kind of -- what advice might you give?
How about the 12 pieces of advice?
How about pick one.
You're taught, you know, top one that jumps into your head.
>> I was warned that this question was coming,
and I have like nothing to say at this moment.
I'm going to ask you to come back to me.
Gosh.
>> Okay, I will totally come back to you.
How about you, Bruce?
>> Well, I guess the thing that, that's coming to mind is, is --
and I'm, I'm -- that just came in my mind when you asked
that is, is, time, is that time does heal this,
and it does take a lot of time to get everything --
to adjust to it, to get that, and at some point --
when I was first in Harborview and just realizing, you know,
and I knew right -- even
when I was injured I knew what had happened.
I knew this was really bad and -- but I kept wanting to like,
you know -- I want to do all this now, you know.
You need to, you need to get me out of this ICU
and on the rehab floor now.
I'm sick of this and, you know, I want to just get out of here.
And at some point I just realized,
you know, wait a minute.
I am really sick and it's going to take a long time to get well.
And at that point I started having more patience with myself
and with other people.
So, I think that's -- we'll see.
>> Okay. Anne?
>> He makes sense.
>> Go ahead.
>> One is take notes.
I am a journal keeper, always have been, and it helped me
so much to be able to look
at three months ago and go, oh, yeah.
That's what I was stressing
about three months ago and now that's gone.
And what came out of that for me was that understanding
that either the thing that is driving you crazy will go away
-- lots of things do, right?
in the first year, second year, whatever.
Or, it will become so routine
that you don't care about it anymore.
Like those are the two things that are going to happen:
either it will go away
or it will become routine, so just cut it out.
And when something was driving me crazy, like, why does it have
to take him 20 damn minutes to get in the wheelchair?
Why? Why can't he figure out a way to do this faster?
We want to go, right?
Whatever it was.
Like, okay, either he's going to get faster or I'm going
to start building in that 20 minutes.
Like one of those two things is going to happen, and it's kind
of up to me how I look at it, right?
But it took forever for me to just sort of calm
down about all the things that I was so afraid of.
It's so scary to watch somebody struggle.
It's just so hard.
So, that's the advice I give.
Keep notes so that you can look back and remember, oh, yeah.
And have some perspective about where you are today,
because it will change.
>> I would say, be patient.
Just be patient.
And I was probably the most impatient person
in the world when I was injured.
And you just, you learn a lot of humility and patience.
And the other thing is,
just don't sweat the small stuff because, as you were saying,
you know, it's, it is not important.
And other things become a lot more important.
And also, I'd like to kind of put a plug in for something else
that Eddie and I do together.
And that is we formed a support group for women in wheelchairs,
and it's called Northwest Women Wheelers Network,
and Eddie is a techie, so Eddie wonderfully put together a
website and an email list
and has been really great helping get that going,
so that's one thing that we've done together.
>> Absolutely.
>> If you know any women in wheelchairs or if you're a woman
in a wheelchair, see me after...
>> I think we have some of your cards, too, really.
>> Oh, okay, yeah.
>> Eddie, what advice would you give?
>> To a wheelchair user or to a...?
>> Either.
To their spouse or to them.
Somebody new that's injured.
What would you -- what advice would you give?
>> Wow.
[ Silence ]
Well, to the, to the spouse, it's to, you know --
I've always been pretty patient, but it, you know,
to be very patient because things are going
to take way longer than it used to, and always --
and the other things is, is that this is just the beginning,
the injury, because of the --
there's so many more other medical things that are going
to come along as a result of, of the injury.
Because other things just happen, you know, and either due
to the injury or just in life, you know,
and there's going to be other problems.
This is not it.
Once you get over this, it's not like that --
that's not the end of it.
It's going to keep coming.
So...
>> Be prepared.
People first.
>> Well, I -- and this was a --
something that, that we did think a little bit about
and the things that, that came most strongly to my mind was
that this is, this is not just my injury.
This is a -- it affects more than just me.
It affects -- it definitely -- Laura, you know, and our,
our family, our community, that -- but especially my, my wife,
and, and recognizing early on that, that it's not,
not just about, about me was really important and,
and that -- so that I think has been a, a big,
big help for, for both of us.
And the, the other part was that, of course,
we can't do this alone.
And we've learned to -- while people were difficult at first
that the difficult ones have kind of dropped off.
And there are some really great positive people who are still
around and who've been just incredible and, and not,
not just friends and family, but, but you know,
the therapists and caregivers who, who have shown up
and [music] just been a real force of,
of positive energy and, and we,
we thrive on that and, and need it.
>> Laura?
>> I have so say that I think I've become a better person
because of this and I feel like when I see somebody being
in the community needing help, I jump forward and help.
So I think there's definitely good things that have happened.
I think our kids have a lot of empathy and so that's --
I don't think that's -- answers the question, though.
[Laughter] So...
>> Advice.
>> Let's see.
I think I have to force myself to get away from Lan
and that's hard for me to do, but I'm always appreciate
when he pushes me out the house and tells me to go do something,
and I don't want to do -- be away.
But he says I come back a cheerful --
and so that's one thing I, I do force myself
and at first it was really hard just to even go away
for like a half hour and --
or, you know, it was just mind boggling like, oh, my God.
Because everything's going to fall apart and -- it's stupid.
So that was a, a good thing.
So...
>> So you'd really recommend people try
and find some breaks and, and take some time.
>> Yeah. And people tell you that.
You go, I'm fine, I'm fine.
And then you realize that's -- they're probably telling you
that because maybe you're not fine, so...
And then I think learning from nurses,
being around a community of nurses.
They are just like a wealth of information, so...
>> I, I know we want to talk
about how our biggest help was talking to other quadriplegics,
and I do make a distinction there because, you know,
not just spinal cord injury patients
but paraplegics can be independent,
most quadriplegics cannot.
Huge, huge difference, you know.
You can transfer yourself into your own wheelchair
if you're a paraplegic and do your own bowel program,
but very, very different if you're quad, most levels.
Some quads can.
So for us, talking to other quadriplegics,
having a mentor -- we are so blessed in that Joe is now able
to be a mentor to people and I always tell him, please,
tell people, you know, their wives
or significant others can call me
because it is the other person's injury also, and it's huge
for the family, but, you know there,
there are ways to get through it.
And, I do think that the hospital has this, you know,
they're seeing this person as a patient
and not how this person integrates
into a family and a community.
And other people who have lived
with this will be able to do that for you.
And in that same vein, make your home as accessible
and non-hospital-ish as possible.
You know, oddly enough, when you're quadriplegic,
your house doesn't need to look as handicap accessible
because you don't need bars, right?
You don't need, like, things at the right level or whatever.
So, you know, our house has an open floor plan.
It's all one level.
We were fortunate that we bought our house, you know,
knowing that, oh, my gosh, Joe's just an injured --
we need this, but having modifications that don't look
like modifications makes everyone feel more normal,
not to mention helps your property values.
So that was, I think, still, you know, really beneficial.
And, you know, Laura was saying, you know, sometimes it's hard
for her to get out and what have you.
And people would always tell me, you know,
"Are you taking care of yourself?"
Yeah. I'm taking care of myself, sure,
right after my two little girls and my husband.
You know, that's on there somewhere.
And the thing is like they tell you take care of yourself.
I appreciate the thought but, seriously,
when am I supposed to do that?
So if you're going to tell someone that, go to their house
and say, "I've got your girls for the afternoon.
You go do something."
You know, just don't expect that people will --
if you're going to make a suggestion
like that, back it up.
Let -- make it possible.
Likewise, get yourself a babysitter or a friend.
You know, Joe's brother lives not too far from us, so,
you know, Joe's brother will come over and drive the van
and they'll go do something and I'll do something with his wife,
or you know, whatever.
I mean, make it possible to give yourself a break
because that whole idea of, you know, take care of yourself,
is -- sounds great, but in real terms it's quite a stress
to think of, well, how am I going to make that happen?
So, don't make it a stress.
Do it for someone.
And there will be a day when you're going to be able
to do it for someone else.
When we're in a position where Joe can mentor people --
and we have a neighbor who was diagnosed
with very serious cancer, and I'm now in a position
to bring her a meal once a week.
So, let people help you because some day you'll be able
to return it.
Bless others by allowing them to bless you.
>> Joe, did you come up with something?
>> Yeah, I'm just going to say I think
that I remember this from the beginning.
I used to say everything from the neck up is still good.
And I think that's important to remember to act, you know,
individually like you used to and act like you're still
who you are because you still are who you are.
And act like a couple like you used to act like a couple,
and that's sort of the re-establishing the new normal
and maintaining the old normal.
It's just try to keep that sense of person as you go forward.
And, you know, I think that route's -- I think you --
people will see that in you
and will reflect it back to you, you know.
I, I tend to act like I'm okay.
And I try to forget that there's this contraption underneath me,
and I think a lot of times I'm surprised I'll --
I see other people forget
that there's a contraption underneath me, too.
>> Right. Yes.
Steve's got a, Steve's got a...
>> I want to think more about the case.
I mean, are there any other changes that you noticed
in your kids that came about as a result
of the spinal cord injury?
>> You all have kids, so -- young or old.
[Silence]
>> I...
>> Oh, go ahead.
>> I was just going to say I also feel blessed.
I don't think -- I'm just an annoying dad to my kids.
I'm the guy who disciplines them
and makes them do stuff they don't want to do, and the fact
that I am or aren't in a chair is kind
of superfluous to them, you know.
And, thankfully they're not embarrassed or shy
about having their dad.
They like to have me come into their classroom.
They even halfway show me off, you know,
look at this [laughter], and little kids, you know,
they all want to grab the joy stick the first day
and then propel me into the wall.
[Laughter] But, thankfully, I don't know, they are kids
that I think have adapted really, really well.
And I honestly -- I don't think they're scarred --
the other stuff we do to them scars them, [laughter]
and not me being in a chair.
>> The, you know, right when Joe got home he had been --
he, he's an adventurous person, and loved to be outside
and hiking and we were just so amazed that we happened
to pick a house that had sidewalks everywhere
because where we live in Bothell,
there's sidewalks throughout our community.
And it just opened up the world for Joe,
because if we had not been in a place with sidewalks,
he'd be stuck at home.
And he used to -- he got home in April
and from the very beginning -- our kids were little little --
put one on each knee and they'd go out,
out and around the neighborhood everywhere,
and they would call it going on an adventure.
>> Well, we have three adult children
and we have three grandchildren,
and it's cool having grandchildren and being able
to introduce them to a dis...a person with disability
because now they're comfortable
with seeing other people with disabilities.
They're not freaked out.
A lot of times little kids are freaked out by wheelchairs,
especially power chairs.
So...but I remember taking my grandkids
when they were really little in my lap and taking them for rides
and they just loved that.
And now, my oldest grandchild is 14 and when I'm
in my manual chair, she's pushing me, so...
>> That's great.
>> It's fun.
[Silence]
>> Kate and Bruce, did you want to add anything
about kids or Laura and Lan?
>> Well, I'm just thinking I think our --
as we went through this whole experience, our, you know,
our fam...we bonded in a way that I don't think we would have
in some ways otherwise.
And, so, it's -- that was, that was really good and like,
Heather, who I was skiing with when I was injured,
when she got -- I think she was about 16
when she got strong enough to actually go out with me
and be able to help me with the sit-ski.
You know, getting it on the chairlift and tipping me
up when I'd crash and all that.
And so we've taken numerous trips,
the two of us, which has been fun.
>> And I just want to thank you all one last time,
and a round of applause
for sharing your [applause] stories tonight.
[Applause] Thank you guys so much.
[Applause]
[ Silence ]