Lani Alton has moved in down the street
from where I live in Cumberland, and
I recently got a chance to meet her
along with her mother Patrice, and Joanna
Finch, who is one of Lani’s care workers.
Lani has had cerebral palsy from birth.
She can’t walk or do most of the physical
things the rest of us can, but she can think
and feel just fine. In fact she’s smart, witty,
fun and wise, which will come in handy as
she pursues her dream to become a writer..
Patrice remembers when she first became
aware of Lani- “I was married and we
had four little kids. At our church I heard
of a baby only a few months old going into
its second foster home. The baby had a hard
time, crying a lot. For some reason I had an
immediate connection, and asked my husband-
“Can we take her?”
One weekend when we already had three
neighbours’ kids over, a social worker called
for an emergency placement for a few days.
I phoned my husband, and he said “yes”,
and we brought her home. When I put her in
my arms, I realized it was the same baby. I
thought- “You’re home- you’re here.”
Lani has been part of the family ever
since. Asked how it was with her siblings,
Lani says- “Its awesome most of the time.
Sometimes I wish that I were the only child,
but I’m also really glad that I have the particular
sisters and brother I have. We’re all
pretty close in age- my oldest brother is
twenty-nine and I’m twenty-three.”
Lani can speak, but her condition often
makes her vocal chords unusable. She can
also write, but can’t hold a pen well enough
for it to be legible. And so she has learned
how to direct the hands of others to write the
words that form in her mind.
To first observe the process, it seems
like her mother Patrice is either faking it, or
clairvoyant.
There seems minimal movement from
Lani, and yet these fully formed, articulate
and grammatical phrases come rolling out
on a piece of paper. Sometimes the wrong
word is written, and Lani protests, and her
mother asks where to make the correction,
until Lani is satisfied.
I wanted to find out how this worked,
and so I added my hand to the chain from
Lani to her mother, and in a short time felt
my hand moving, and looked down on the
piece of paper, and the word “HI” was unmistakably,
if imperfectly formed. Voila!
Lani explains how she came to be living
on her own in a ground floor flat in Cumberland-
“I moved out in November. Originally
mom and I had talked about her being the
one to move out and so it wouldn’t be such
a big move and adjustment for me, but then
I woke up one morning and thought- “Wait
just a minute- that’s not how this thing
works. The kids are the ones who move out,
not the parents.” So at that point I decided
I wanted to move out on my own and into
my own house and it took a long time to get
here but I’ve done it with a lot of help from
friends, family, professionals and people in
the community.”
Obviously, it takes a lot of help for Lani
to live successfully on her own. The government
pays for professional care givers to
be around twenty-four hours a day assisting
with basic necessary functions.
But one of the by-products of Lani’s condition
is pain, and though she works hard at
coping with it, she needs help so that she can
accomplish her goals.
As she explains- “Backs spasms- thats
part of my dilemma. Massage, Alexander
Technique, .physio, chiropractic. acupuncture,
speech therapy, all of these things help
relieve tension and pain. And they also help
me to develop the ability to use my arms and
legs and my speech to communicate and interact
with people more easily and clearly.
And also more independently- but none of
these things are funded by the government
anymore.”
This is why Joanna Finch has organized
a fund-raiser event for Lani on July 4- see
shaded box on next page.
Of course there will be lots of music at
the event, and Lani will be there lapping it
up- “I love music. Probably my favourite
this week is Tammy Fassaert. I would love
to play piano. I can bang around on one very
clumsily. I think it’s something I could work
on with a piano teacher and a phsyio and AT.
But opera- I can’t stand that!”
Everyday activities, like eating, can be
problematic for people with cerebral palsy.
Lani says- “I’m kind of confused about
food. Eating has been really a hard thing
for me the last couple of years. My physical
reality is such a complicated and complex
one, that anything simple to most people is
multi-layered for me. So if I find something
that’s easy for my constricted throat muscles
to swallow, then it might not be healthy for
my bowels, and if I eat food good for my
digestive system then its not necessarily in
line with my ethics.”
Lani would like to become a vegan, like
her mom, but she also needs to heed the advice
of her caregivers:
“In order for me to get government
funding I have to see health professionals
that the government chooses and pays for or
else I lose my funding. People the government
chooses are usually mainstream health
professionals who are wonderful people and
whose training is in the traditional medical
model of health.
I feel caught in there. I would like to
explore being vegan but I feel like I have
to follow what the professionals tell me to
do. Otherwise I might find myself in a group
home or some other living situation that
would feel like prison to me.”
Instead, Lani enjoys being where she
is- “I love living in Cumberland. I really enjoy
walking around in the community and
downtown. I know that it can be intimidating
for people to get to know me, because I
don’t come with an instruction manual. But
I find that people here generally take more
time and are more slowed down, which
makes it easier for me to talk to them. I’ve
gotten to know some of the shop owners and
am slowly getting to know other people,
but that’s been hard for me because I have
been in so much pain, that it’s hard to get
out and meet new people. But as my support
systems get in place so that my safety and
health concerns are being addressed, I am
beginning to feel more at ease and in more
control of my life. As that happens, I have
much more confidence in telling the pain
where to go.”
Lani may be
restricted in her
movements, but
in other ways she
seems freer than
the rest of us. When
she laughs, or cries
out in agony she
does it all the way,
with nothing held
back. And so her
being, in its vulnerability
and directness
becomes a lesson
in living in the
present, fearless
and without compromise.
Dealing with
the challenges of
cerebral palsy with
such courage and
determination has
given Lani insights
which she would love to share with others-
“I would like to write a book. I also have
been talking with a counsellor in town about
doing a presentation together that we do
here and then take it on the road. It would be
about how to use your mind in order to take
charge of your life.”
She continues- “I had mostly been reading
books about how the way we use our
minds can change our brains. I know how
to change the way I am thinking in a given
situation to change both my body response
and change the outcome of the situation.”
Lani sums it up as eloquently as anyone
ever has- “I want people to know that I am
learning it can be incredibly hard to face the
things in life that hold us back from the life
we like to picture for ourselves. But if we
have the courage to become friends with
those very things that scare us, then we get
to know them and they end up becoming our
friends instead of the enemies to our happiness
that we had made them out to be.”
Amen.