Jamila: My lymphedema started when I was 18 years old.
At its heaviest it got to be
150 pounds.
I was bedridden for
three and a half years.
I would love to walk without the Walker.
First baby steps, baby steps.
Yeah. Going outside and walking outside.
Carmen: Yeah. How do you feel about that?
Jamila: Nervous but excited.
It's so beautiful outside,
always looking out the window.
That was my view for about
four years almost.
After a while, it doesn't seem real anymore.
It's almost like watching a TV show.
I was bedridden 24/7
No breaks, no bathroom,
no kitchen. No nothing for
almost four years of my life.
I have lymphedema,
distichiasis
syndrome of the FoxC2
mutation. It causes me
to swell in certain parts of my body
not everywhere but just certain parts.
The main point where it started swelling
was my right leg.
Being stuck in bed for so long
day after day has its challenges.
It can be really hard. It can also
be whatever you make it.
I had a policy of celebrating
every little thing I possibly could.
One thing that I learned from my mom,
my mind isn't broken.
So even when my body was broken
my mind could still be free, I could still
learn things like I learned how to do
the ukulele. I started coloring.
I started doing bed yoga, because at that time,
I was using a bedpan.
And my mom who was physically handicapped
would have to help me with my bed pan.
It was such a struggle for her.
I didn't want her to struggle anymore.
So I practiced these stretches so that I
can get the range of motion to do those things
by myself.
My mom was
one of the most wonderful human beings
you could ever encounter.
She was my best friend in the whole world.
Whether it was over video chat, or
she was just rubbing my leg
up into the wee hours of the morning because I was hurting.
She was with me.
My situation got life threatening.
Well, my skin started peeling off,
and I had such a severe bacterial infection.
They said if I would have waited any much longer I would have died.
That’s a scary thing, almost dying.
The surgery was about 12 hours long.
It was one of the biggest that the doctor had done
at the time. It is a
de-bulking surgery it's when they take
off all the extra tissue and
drain the fluid and stuff off the leg
and then they do skin grafts and replace the skin
onto the leg and then
the leg won't be able to do much swelling
ever again.
Unfortunately, a month
and eight days after my surgery,
I lost my mom.
She was my best friend and my caregiver.
But most of anything she was my mom.
And that was by far the hardest thing.
I told you, I told you we needed an extra pair of gloves
we're doing great.
So much work
almost got it almost got it
almost free.
The huge mass that was my life
they took skin from that part of my leg
and used it to coat this most of the skin
graft didn’t take. So it's not a pretty girl
but it's mine. And
you know, I didn't have to get my leg cut off
or anything like that.
Jasmine: Yeah, but like look at how far it's come from where it was before.
Jamila: Yeah, like oh this was so bad.
Jasmine: This is actually better than what it was
which is crazy to think about.
Jamila: When they did the surgery they cut off
120 pounds of leg including
fluid and I just say that they cut off the skinny girl.
Jasmine: Good job.
No, oh gosh don't do that.
Jamila: I wasn’t going to fall.
My life since the surgery
has been a lot of learning curves.
I had to relearn how to walk.
I had to relearn how to use the toilet.
Oh, I'm potty training,
but it's been exciting. It's been an adventure.
Should I dance? I think I should dance.
Jasmine: Go. Jamila: She said go Lee.
What is he doing?
Jasmine: He's coming.
Carmen: Hey, Mila.
Jamila: In here.
Carmen: I work for an ambulance company. We were sent to the hospital
to pick up somebody to be transported from the hospital
to be transported back home.
Jamila: By the time I had met Carmen the first time
I had not been outside in
about a year,
except for riding down to the ambulance.
Carmen opened the doors to
her ambulance truck and just let me feel the sunshine.
Which is something that almost made me cry
because I hadn't felt it in about a year.
Going outside and walking outside
on uneven turf.
Carmen: Yeah, how do you feel about that?
Jamila: Nervous but excited. I'm willing to embrace
it and start having adventures
because I've been in bed for way too long.
Carmen: And just getting out of the bed is the first step.
But the fact that you can now stand because you basically you now have two legs.
Jamila: Sure do. Carmen: You know, and...
Jamila: Like actual legs. Carmen: Actual legs.
Lee: What's up, Mila? Lee: Hey Lee.
Lee: Ready for the exercises?
Jamila: Yes.
Lee: So start off on your count. On
one, two.
Carmen: She really amazed me about how strong she is inside.
No matter how much pain she's in.
I have just been so impressed how she can just
tough it out. Jamila: 19.
Lee: One more Come on. Jamila: 20.
Lee: Good job. Jamila: Give me some.
Carmen: She has lived in a bed for almost four years.
She's just learning just like a little kid start to walk again
or somebody you know going outside for the first time is
this what it's going to be to her. It's all new.
Jamila: Made it.
Jasmine can you wait to get over please?
I would love to just walk through the grocery
store without getting tired or needing a walker.
I would like to go on a date. You know,
something simple like that.
Jasmine: Proud of you.
Jamila: Here we go.
I’m getting it.
Yeah.
I have a future with an even bigger purpose.
And what you're looking at now
is the start of that even bigger purpose.
Jasmine: Yes girl. Jamila: Oh gosh
I would like to, can’t stand it.
Jasmine: Girl.
Jamila: It just felt right.
Lee: Awesome. Carmen: Oh my God.
Jamila: That was my first,
first group of long steps without the walker
Carmen: It’s amazing.
Jamila: Oh my gosh thank you God,
thank you God. Lee: You did it.
Jamila: I love our little family. Come on Lee.
Lee: I’m right behind you Jamila: Yeah.
Carmen: I love it.