This photo quote was submitted by Grandpa Silverback/ Paul Hartman on my Facebook wall.
Here is my response:
When the doctors say, "We don't know your diagnosis" - PERSIST
When the medications say, "You are too tired to do anything useful" - PERSIST
When people say, "You can't do anything anymore" - PERSIST
When the world says, "Your illness will always stop you" - PERSIST
Keep persisting, and you'll eventually cut through that rock!!
When are times that you have persisted and cut through that rock?
When I was 17, laying in a coma at the children's hospital, and the doctors did not know what to do with me, my aunt - a primary care physician - persisted, did so much research, and was the one what convinced them to do a brain biopsy on me, and that was how my doctors finally diagnosed me.
When the doctors told my parents that I would have speech issues after recovering from my coma, and I would only be able to speak 5 words a day, upon hearing this, I responded with, "What do you mean I can only speak 5 words a day?"
When the psychologist told me I would have a C+ average and never be an honour roll student again, I studied - with my brain that was just recently inflamed - and graduated high school with a 4.0/ A+ average, winning 2 academic awards.
When the world said I could never be cured because of my incurable disease, I used my illness to share my story with others, raising awareness, so that one day - a cure can be found.
Keep persisting, and you will break through that rock :)
How much of our lives
do we spend waiting? Every day we are waiting…waiting at the red light, waiting for the food to heat up in the
microwave, waiting for the water to boil, waiting for someone to return a phone
call…there is so much time of our life that we spend waiting.
But what do you do while you are waiting? When you're at the stop light, do you
pause and freeze, and stop driving? No, you are probably mentally planning your
driving route in your head, and preparing to make a turn, or to go straight at the
green light. Some people take those couple of seconds to turn on the radio, or
to pull out a map to check their directions. For my husband and myself, we
usually like to take that time to give each other a sign of affection, such as
a kiss on the cheek.
In life, there are many red lights. For most of my
readers, this red light is an illness. A red light that reminds you of things
that you cannot do, and tells you, "No, you cannot move forward at this
time." For those without an illness, there are many other problems in life
that come as a red light. Perhaps you lost your job and have trouble looking
for work. Perhaps there is trouble in the family or you just got out of a bad relationship. Or
maybe, you are giving yourself your own red light, because you are having
trouble with your confidence, your self - image, and you've lost self-esteem.
It's because of the red lights in our lives that we wait. For those with an illness, we wait
to go into remission. For those without a job, you are waiting for someone to
see what you are worth and tell you that you are hired. For those who have
trouble in the family or just got out of a bad relationship, you are waiting
for reconciliation or healing. For those who have trouble seeing themselves as
a person worthy of love, you are waiting for someone to reach out to you and
show you that you are worth loving. For anyone else with other obstacles, there is
always "waiting" involved, until you overcome that obstacle and
move forward.
In life, how often
have we been at red lights…but stayed there, not planning, not
preparing, and
not showing affection. Some people encounter obstacles and freeze up.
They get lost and don't stop to take out a map for direction. They wait
for so long at the red light that traffic builds up around them, until
they realize that they simply had to make the red light in their lives
turn green so that they can move forward.
At the first
Christmas, when Jesus Christ was born, He was the answer to thousands of years
of waiting. God had promised His people
that He will send them a Saviour, to save them from their turmoil and cast out
their sins. God's people waited for years and years. Some gave up, but some had
hope in His promise. And it was those who had hope in God's promise who were
able to recognize His Son, for who He truly was.
In the song, "The Virgin's Lullaby," we hear about the Three Wise Men, who have searched for years for the
star that would lead them to Christ, the Ultimate King. Like God's people, the people of Israel, the Wise Men also waited for
years and years searching for the Messiah. But in their wait, they were preparing themselves so that they may bring honour to Jesus when they met him.
In this same song, we also hear about Mary, who is part of God's people and has been
waiting for a Saviour. She was just a very young girl when she was told by an
angel that her entire life was about to change. But while waiting to give birth
to the Son of God, she rejoiced, and found joy in her period of waiting.
In life, how often do
we take the time to find joy during our periods of waiting? If you have an
illness, and you are waiting for a diagnosis, for remission, or to be healed -
you can still find joy in the waiting. Joy might be more difficult to find when
you are in a hospital, or when you can't get out of bed in the morning because
of chronic pain, but joy is still there. You just need to find it, and there
are so many places where it can be found. It can be found in the loving arms of
family. It can be found in the comforting words of friends. It can be found
in a hobby that you love to do. Or if you are a Christian, joy can always be found in God's Word and in His comfort, no matter what is happening in your life. Don't see your illness as a red light.
In life,
you can control your own traffic light, and make that red light turn green. Life
shouldn't stop because of a red light, make that right or left turn on the road and make changes in your
life, or best of all, make that red light turn green, and move forward in your
life.
My last flare up with
my illness happened last September, when I developed status epilepticus, a
symptom of children's primary angiitis of the central nervous system (if you do
not know this illness, please see my first blog for an explanation). I don't remember
those five days in the hospital when I was having constant seizures, and my
husband didn't know whether I was going to die. Or if I lived, will I be the
same person that I was? After my seizures, the vasculitis attacked my visual
cortex in my brain, and I had another couple of days with vivid hallucinations, where I
couldn't distinguish reality from my dreams. I couldn't even recognize my
husband at times and said some hurtful things to him. It is now almost three
months since my flare up, and I have been waiting to go back to remission, and
officially be off chemotherapy and the other medications that I am taking.
Just because you are
"waiting" doesn't mean you can't move forward in your life. It also
doesn't mean that you can't plan, make changes, or hope for a better future.
During these last three months, I've been planning on where to apply to when I
can go back to work. I've made changes in my life - such as writing this blog
to encourage other people, and creating a Facebook group where other people
with a life-changing illness like me, can share their perspective about
life. Although I was at a red light for
a while with my illness when I was hospitalized for nearly three weeks, I chose
to make that red light turn green and I moved forward, while waiting to return to
remission, and finding joy in the loving arms of my husband, the comfort of my
friends, and finding again - my joy for writing.
I have to say, I don't know if
I would have found that joy in writing if I hadn't had the encouragement from a
good friend, Ginny, who also has the same illness as me. She gave me the
confidence in my writing that I had lost long ago. My husband had encouraged me
before to start writing fiction again, since before I had been writing a
novel. But before this last flare-up, I never felt that I had anything to share
with other people.
No matter what your
burden is - an illness, financial troubles, trouble in relationships, trouble
with your self-concept, or anything else that is preventing you from living the
life that you want - know that while you are waiting for your burden to be lifted,
you can still find joy.
Joy can be found in any circumstance in life. If you are sick, think of the
positive things that have happened since and because of your illness. Perhaps
you made a new friend or found a new hobby to help you get through your illness
that has brought you joy. If you have financial troubles, there is still joy to
be found in other areas of life, because money does not make the world go round
- no matter what others may think. The love of others is more precious than
your bank statement will ever be.
For those who are
Christians, we know that God's timing is perfect, and that there is a reason
for everything that happens in our lives, and that God's will is always higher
than ours. God also uses our waiting to make us stronger. I know that I
wouldn't be the person today if I didn't spend years waiting on God to
deliver me from family trouble, or if I hadn't spend months for God to bring me to
remission after my first flare-up. In times of waiting, let us be like the Three Wisemen, and continue to search - but this time, searching for the heart of God, and casting our burden on Him so that we can draw nearer to Him.
Maybe you are waiting
for God to lead you to your future husband and wife - instead of waiting at
that red light, be proactive and turn that light green, and move forward while
preparing yourself to be the kind of person a husband or wife would want to have,
all the while, finding joy in singlehood that God provides such as living
independently and achieving goals that you may not have time to do right away
after getting married.
This
Christmas…whatever obstacles you may be facing, may you find joy in the process of waiting to overcome it. Turn your red light green,
make that turn on the road of your life to make necessary changes, or go
straight and move forward - finding joy in your hope of what the future can
bring.
Merry Christmas
Everyone! :)
If you'd like to know more about the Christmas story, you can watch the movie, The Nativity, or check out this video, "The Virgin's Lullaby."
Or better yet, look in the Bible...you'll find the story at the beginning of the Book of Matthew and the Book of Luke.
Christmas
is my favourite time of the year. I believe it's because I love celebrating
Jesus' birthday better than my own. In addition to that, I love the festivity
that comes along with Christmas - I guess I am what you can call a
"Christmas geek." My husband had thought we were done with buying
Christmas decorations last year, then I told him, "But no! We don't have a
manger scene! And I want to get a winter scene where little skaters can skate
around on a mini-pond!"
Yes, I love
Christmas. I haven't even gotten tired yet from baking my seventh batch of
cookies, to give away to friends and family for their Christmas present. I do
believe I have three batches left to go, but the joy of giving doesn't make it
a stressful event for me . Gifting has grown to be a stronger love language for
me recently . If you don't know what love languages are, see my previous post
about Christmas Song #5 Don't Save it all for Christmas Day.
For some of
you, maybe you're not looking forward to the holidays. Maybe you've had such a
rough year, that you can't see how it could possibly end well. Maybe you're
missing important family or friends, who won't be able to share Christmas with
you. Or maybe you feel like Christmas can't be special this year, when you're
coping through physical pain, or waiting for a doctor's diagnosis, or
struggling to cope with a loved one's illness.
But as
these lyrics say:
"It's Christmastime
There's no need to be afraid"
It's
Christmas time - a time to focus on the joy of spending time with family and
friends. A time to reflect on the meaning of Christmas. A time to look back on
this past year, and wonder what you would like to do differently in 2012. A
time to share the Christmas spirit with others. What does Christmastime mean to
you?
"At Christmastime, we let in light and we banish
shade"
There is
shade in all of us. The shade could be caused by your illness, constantly
tormenting you, constantly reminding you of everything you cannot do because of
your symptoms and your condition. The shade can be cause by other trouble in
your life - troubled relationships, a troubled career, troubled secrets, or a
troubled self-concept. Maybe you've lost hope in yourself, and can't even
imagine yourself being a source of hope for other people.
But it's
Christmastime, like the lyrics say, "we let in light and we banish
shade." Banish your shade this Christmas, by letting in the light of the
world. As a Christian, I believe that Jesus is the Light of the World. But
there are other sources of light as well - the light of hope, the light of
love, the light of joy, the light of peace - all of which can be found with
special family and friends at Christmastime.
"And in our world of plenty we can spread a smile of joy
Throw your arms around the world at Christmastime
But say a prayer
Pray for the other ones"
In the
Bible, Jesus says:
‘I can
guarantee this truth: Whatever you did for one of my brothers or sisters, no
matter how unimportant they seemed, you did for me.’
Matthew 25: 40 (God's Word Translation)
How can you
spread a smile of joy this Christmas?
At Christmastime it's hard, but when you're having fun
There's a world outside your window
And it's a world of dread and fear
Where the only water flowing is the bitter sting of tears
And the Christmas bells that ring there are the clanging
chimes of doom
Well tonight thank God it's them instead of you
This
Christmas, I know that there are other pressing concerns to the hearts of some.
Some are still waiting to get a final diagnosis. Some are dealing with chronic
pain. Some are struggling with other personal issues.
Perhaps you
don't agree with part of this verse because you're not "having fun."
But regardless, there is still a "world outside your window…of dread and
fear. Where the only water flowing is the bitter sting of tears."
In that
"world of tears", people are crying because of starvation, because
they are orphans, because they have no homes, because they are persecuted…there
is so much more to their tears than what most of us are crying about right now.
No matter
what you are facing, no matter how tough life may seem, even if it feels like
the world has turned against you, or that you have an illness where there is no
hope, no cure, no promise of remission - you can consider the people who have
it worse than you, and with the right perspective, still be thankful in your
circumstance.
Consider
that world of tears again, and think about reasons that other people are crying
that aren't the same reasons as your own. Be grateful that you don't have those
reasons. If you have a loving supportive wife, husband, or significant other,
be grateful that you are not crying like the woman whose husband has just left
her. If you have food, be grateful you're not crying like that homeless person
on the street who can't find a soup kitchen. If you live in a democratic
country, be grateful that you're not crying like the people who are daily
oppressed by their government.
And there won't be snow in Africa this Christmastime
The greatest gift they'll get this year is life
Where nothing ever grows
No rain nor rivers flow
Do they know it's Christmastime at all?
This
Christmas, how can you let others know that it's Christmastime? How can you
share the joy of the season with someone else?
(Here's to you) raise a glass for everyone
(Here's to them) underneath that burning sun
Do they know it's Christmastime at all?
Feed the world
Feed the world
Feed the world
Let them know it's Christmastime again
Feed the world
Let them know it's Christmastime again
Maybe you
don't have a chance to give anything to Africa this Christmas, but there are
other ways you can give to help spread a smile. Consider buying a meal for the
next homeless person you see on the street. Drop a couple coins off to the
people who ring Christmas bells for the Salvation Army. Maybe bake some bread
and drop it off at your nearest soup kitchen. There are plenty of ways you can
find to spread a smile of joy to others.
If you're
too tired this Christmas to do any of the above, like this song says, "Say
a prayer, pray for the other ones." Prayer is something you can do at any
time, despite how you are feeling or where you are. Prayer is also something
you can never run out of - and there is no such thing as praying too much for
the "world of tears."
This Christmas, I pray that your Christmas be joyful, and if you have tears,
may they be tears of joy.
I was watching the
Christmas Glee episode last week, and my husband started laughing at me because
he thought I was crying at a commercial. He didn't realize - at that moment -
that I had started crying while watching the scene where the Glee members were
singing, while feeding the homeless at the soup kitchen and giving presents to
the children.
I tried to hide my
tears - I was really embarrassed to be crying. My husband thinks it's because
being on prednisone and cytoxan heightens my emotions - and that I am a woman
(lol).
I partially agree
with him. I definitely was crying a bit because of emotions, and since my
current medications are currently raising my emotions to a couple degrees
higher, it makes sense that I would start crying at things I wouldn't normally
tear up so easily about.
I think it was because that watching the kids on this
TV show made me think of the little girl I am sponsoring through Children of
the Nations, and how there are so much children in need this Christmas season.
Children of the
Nations is an organization based in the United States that aims to provide
holistic, Christ-centered care for orphaned and destitute children, so that
they may grow positively and be a part of lasting change in their nations.
This video I made is
a quick summary of Children of the Nations. The song in this video reminds us
that God has called us to care for the orphans in their distress, because this
"religion that God our Father accepts as pure and faultless" (James 1:27).
Even if you are not a
Christian, taking care of the orphans is one of the best "religions"
you can have.
This Christmas, I ask
you to consider going to www.cotni.org and
sponsoring a child. If you are not ready to commit to sponsoring a child, you
may go to http://www.cotni.org/gift-catalog-giving,
where you can purchase a gift from the gift catalogue. You can give the gift on
behalf of someone else. If you have not yet finished your Christmas list,
telling someone that they can take the credit for buying seeds - in order to
prevent famine in countries - would be an excellent gift idea.
The Children of the
Nations gift catalogue has gifts that you can purchase for any budget, in
different countries, and for different needs.
For many of my
readers - who are living with an illness
- it may be hard to think of helping other people outside the box, when
life is already complicated enough with doctor appointments, the physical
aches, paying for medications, and sometimes struggling to just get out of bed
the next day.
If you are reading
this blog, you can afford to give a little this Christmas. You're probably
reading this from your laptop, your desktop your computer, or your cell phone.
The orphaned children of the world do not have the luxury of such items. Simple
things such as books, notebooks, crayons and pencils are enough to make them
happy.
If you cannot give to
Children of the Nations, I encourage you to find a similar organization and
give to them.
There's a song by
Newsong called "Light your world."
This Christmas,
instead of just hanging Christmas lights, light your world as well:
Celine Dion is a famous Canadian
singer, and the song, "Don't Save It All For Christmas Day" is a
favourite Christmas song of mine. Not only does Celine sing it beautifully,
but the message behind the song reminds us that we don't have to wait until
Christmas Day to bring out the best in us - the best should be brought out in
us, everyday.
Don't Save It All For Christmas Day
Don't get so busy
that you miss
Giving just a little
kiss
To the ones you love
Don't even wait a
little while
To give them a little
smile
A little is enough
How many people are
crying
People are dying...
How many people are
asking for love
Don't save it all for
Christmas Day
Find a way
To give a little love
everyday
Don't save it all for
Christmas Day
Find your way
Cause holidays have
come and gone
But love lives on
If you give on
Love...
How could you wait
another minute
A hug is warmer when
you're in it
And Baby that's a
fact
And saying "I
love you's" always better
Seasons, reasons,
they don't matter
So don't hold back
How many people in
this world
So needful in this
world
How many people are
praying for love
Don't save it all for
Christmas Day
Find a way
To give a little love
everyday
Don't save it all for
Christmas Day
Find your way
Cause holidays have
come and gone
But love lives on
If you give on
Love...
Let all the children
know
Everywhere that they
go
Their whole life long
Let them know love
Don't save it all for
Christmas Day
Find a way
To give a little love
everyday
Don't save it all for
Christmas Day
Find your way
Cause holidays have
come and gone
But love lives on
If you give on
Love...
Love...
In his book,
"The 5 Love Languages" - Dr. Gary Chapman talks about how each
person expresses "love" in his or her own unique way, and is more
responsive to receiving love in a certain way as well.
Since it is
Christmas, the "Season of Giving," lets give love to others. Love is
free, it doesn't cost any money (even though there are people who think
different). But like Jennifer Lopez said in one of her famous songs, "My
love don't cost a thing."
Giving love away
doesn't cost a thing. The only love that ever came at a cost was God's love
for us - when He sent his Son to die on the cross for our sins, out of His
sacrificial love.
Have you ever loved
someone so much, that you would send your spouse, your daughter, your son, or
even your closest friends - to save that person's life?
Amidst the shopping,
the baking, the planning, and the preparations of Christmas - the theme of
love often gets lost, and people forget that love is the most important gift
you can give away at Christmas. Love is more important than the expensive
present you bought at the department store, or that thoughtful gift you
handcrafted yourself, or even the cookies you baked for your neighbours.
While all those
presents are nice and do bring joy to others - love - in itself - can bring
greater joy, and plant better seeds in the hearts of many.
How can we give love
away this Christmas?
Dr. Gary Chapman
talks about giving love away in five different ways.
Words of affirmation: These are
positive words that encourage people and raise their spirit. Words of
affirmation give hope and do not judge. Consider calling your sibling just
to say, "Hey, you've done a great job with being a parent while
working at the same time." Or write on a friend's Facebook wall,
"You're special, hope your Christmas is just as special this
year!"
Gifts: Yes, I did just say that
love is more important than the gifts that I mentioned above, but when you
give these gifts, expect nothing in return. Don't give cookies to your
neighbour, and then ask them for a favour. Don't give a handcrafted
present to your significant other, and then wonder why he or she didn't do
something equally nice in return. Gifts should be an act of love given
freely without expecting gifts in return. Why don't you give gifts to
people who can't give gifts away? Give a twenty-dollar bill to the
homeless person at the corner of the street, or sponsor a child through a
non-profit organization beginning in the New Year. Maybe make some food
and bring it to the homeless shelter to serve.
Physical touch: Some people
like to give love through physical touch, whether it be a kiss for their
significant other, a hug for a friend, or just a comforting hand on the
back when someone is feeling down.
Acts of service: Acts of
service are when you do something to help someone else - again, expecting
nothing in return. For example, I have baked cookies for family and
friends as their Christmas presents (this is a double act of love),
expecting no gifts from them, and I've been spending much time in the
kitchen making these cookies as special as I can, out of love, not hoping
that someone would be giving me a container of goodies for this Christmas
season.
Quality time: This is actually
my best love language…and also the love language I prefer to receive. I
love spending time with other people. Quality time means actual
"quality time" - this means your primary focus is on that
person, not on the television, the activity that you're doing together, or
the location of where you are. Quality time can include talking over
dinner, sharing an activity, or choosing to venture out and explore
something new. Quality time with someone says, "I care about you
enough to take time out of day to make you know how important you are to
me." Quality time can also include taking the time to write messages
to someone, read their reply, and taking the time to make sure you respond
to their message as thoughtfully and meaningfully as you can.
These are five
different types of acts of love that you can give away, but "don't save
it all for Christmas Day." Love is a gift that you can give away daily.
www.cotni.com
This Christmas, I
challenge you to give love away to those who don't receive love everyday.
Consider the homeless, or the orphans, or the ones who live in countries where their
government can't give the love they deserve.
Give love away
everyday, because it's a gift that you can never run out of.
I love the song,
"Where are you Christmas?" by Faith Hill. If you read my previous post
about "My grown-up ChristmasList", you can see how I can relate to the feeling of having lost
the meaning of Christmas in the past. It's easy to lose the meaning of
Christmaswhen you have expectations,
and those expectations are broken. Or when you're given promises, and those
promises aren't met.Or maybe you've had
so many broken Christmases that you gave up on fixing it. Either way, finding
the meaning of Christmas becomes more difficult when you've lost hope during
the journey of searching for it.
As a Christian, the
most significant meaning of Christmas for me is celebrating and remembering the
birth of Jesus, and how God so loved His imperfect world that He sent His Son
in human form to save us. It was His unimaginable love that gave hope to a world
who lost the meaning of life.
For people living
with an illness, the song "Where are you Christmas?" can apply to us
on any given day - except take the word "Christmas" out and replace
it with the word "life."
Where are you (Life)
Why can't I find you
Why have you gone
away
When you live with a
life-threatening illness, you endure the physical symptoms, the treatments, the
side effects of the treatments . But there's also loss involved. Maybe you lost
friends who just couldn't understand what you were going through. Maybe you
lost your job because your illness won't let you work. Maybe you're like me,
and your illness caused you to lose memories - literally stealing pieces of
your life away.
Where is the
laughter
You used to bring me
Why can't I hear
music play
When you're on
chemotherapy, it's not unusual to start laughing less. Or when you're taking so
many pills every day just to stay alive, it's easy to focus on its physical
side effects and become deaf to the music of life.
My world is changing
I'm rearranging
Does that mean
(Life) changes too
After your
diagnosis, your world rearranges according to your illness. Life choices have
to be made in light of your illness. Daily activities are chosen carefully
according to your current symptoms. You build a bubble around yourself if you
want to stay healthy because being on immunosuppresants (definition: drugs
that suppress your immune system) make you highly susceptible to the common
cold and other worse viruses. Relationships change because you have
changed.Life change is inevitable with
an illness, but it's how you deal with these life changes that defines your
character and helps to pave your journey.
Where are you (Life)
Do you remember
The one you used to
know
I'm not the same one
See what the time's
done
Is that why you have
let me go
If you have read my
first post (which I recommend you do, because what I say next won't have any
context), you saw how I described the person I used to be before I got sick.
For people with an illness, there are three phases of time.
My 17th Birthday, about 4 and half months before I would fall into a coma, because of children's primary angiitis of the central nervous system.
The first phase is
"life before the diagnosis": life before your illness, when life was
considered "normal."
My mom took this photo during one of my 32 days spent in a coma.
The second phase is
"life at diagnosis": this phase includes your first symptoms and how
you reacted to them. It can also include the time when you were finally diagnosed and
how you dealt with it. This phase also includes the initial treatment and how
you chose to adjust to life according to your illness.
At SickKids Hospital, Toronto, Ontario. This is about a week after I have woken up from my coma. In this picture, I am writing a letter in French to my philosophy teacher for homework. I was still on the feeding tube at this time - and I couldn't wait to be eating real food - even Jello - which I normally wouldn't eat. The social worker also decorated my room with Leafs memorabilia! I was also lucky to have been at SickKids while the Leafs players were visiting.
(If you don't know who the "Leafs" are - they are a Canadian hockey team - Canadians love hockey. Find out more on http://mapleleafs.nhl.com/club/news.htm?id=460198. I was also in two other newspaper articles and in the news, but I wouldn't be able to post that here.
Getting ready to start my first semester in January 2007 at TrinityWestern University. At that time, my current meds were prednisone (steroids) and imuran (a light form of chemotherapy in oral pills).
The third phase -
preferred by all of us - is "life in remission": when life finally
seems normal. When it seems like you can be the person you used to be before
your illness. If your illness comes with chronic symptoms that prevent you from
becoming the person you used to be before your illness, then remission can
refer to the period of time when you finally overcome the idea that your
illness is a burden to you, and you begin to see your illness in a new and
positive light. How can you use your illness to be a positive testimony to
others? When others see you, will they see you as the sum of your symptoms, or
will they view as a person who faced a life threatening illness that couldn't
be physically defeated, but was conquered because of the power of your heart
and mind?
(Life) is here
Everywhere, oh
(Life) is here
If you care, oh
If there is love in
your heart and your mind
You will feel like
(Life) all the time
The above statement
sums it up: life is not limited to your physical symptoms. Life does not have
to be defined by your illness. You may not be able to control how your illness
affects your life, but you can control what you do with the life that you have
left. When your heart and mind are filled with love, it can be easier to
experience the joy of life again.
Even at times when
life seems lost, it's not - it's just that life changed and we have to make
adjustments. How you live your life will decide how much you choose to lose or
win in life. Will you retreat and fall back, losing the race to your illness?
Or will you take a proactive stance, have hope in denying the statistics, and
have faith in the possibility that you can be the exception to your illness?
Miracles have happened before - and miracles can happen again. A
doctor's
prognosis is not the final word.
The
title of the newspaper article I was in - written by Mike Strobel in
the Toronto Sun in September 2005 - was "Life is hockey for Maple Leafs players. For the
young patients at SickKids Hospital, it's something else altogether." For
other people who don't live with an illness, life can be music, life
can be their job, life can be their children. For us - life is
"something else altogether." Mats Sundin, the captain of the Toronto
Maple Leafs during 2005, said in the news article, "This room (Marnie's
Lounge - a place at SickKids where patients can come and enjoy
themselves) has been very special...it puts your whole life in
perspective. We're out there playing hockey and it's a game."
"And these kids?" - the reporter asks.
"They're a lot braver than we are, for sure." (Mats Sundin)
The reporter concludes his article by saying, "Too bad life can't always be a game."
For all of us living with an illness - even though most of us reading this article aren't "kids" - we can still relate to the words of this reporter. Life can't always be a game, or just about your job, or just about your family, or just about your social life.
For some of us, life has thrown us more curve balls than others. And for some of us, life has taken us up and down a rollercoaster of events, with twists and turns that have made us dizzy and nauseous, making us beg anyone to take us out of the seat where we are strapped by the seat-belt of our illness.
But when you're brave, and you continue to live life to its fullest - regardless of whether or not you're at the beginning of the rollercoaster, in the middle of the ride, or you're about to step off - you help other people put their life into perspective as well, thus offering them hope for whatever they are facing.
I feel you (Life)
I know I've found
you
You never fade away
The joy of (Life)
Stays here inside us
Fills each and every
heart with love
Where are you (Life)
Fill your heart with
love
You can feel the joy
of life during any phase - whether it be at diagnosis, during a flare up, or in
remission - if you have hope, you can still have passion for life. As long as
you have appreciation of life, the joy of life will not fade away from your
heart. When you are willing to embrace life despite its risks, you know that
you've found it. As long as you're choosing to live life to the fullest each
day to the best of your capabilities, life will never fade away - no matter
what your physical symptoms are.
You know that you
have found life - and Christmas -when
your heart is filled with love, and you realize that the meaning of life can be
found when you recognize that illness is not the enemy, but choosing not to live
is.
I hope you all find
joy in Christmas and in life this Christmas season, 2011.
Christmas is soon approaching, and I don't know about you, but I start listening to Christmas music as early as mid-October. I'm Canadian, and our Thanksgiving occurs early in October. After that, the next major holiday to celebrate is Christmas!
I was always such a fan of Christmas. Regardless of what was currently going on in my life, I always had that hope that this Christmas, things will be different. This Christmas, things are going to change. This Christmas, things will be better than last year.
When I was growing up, Christmas wasn't always happy-go-lucky. There were Christmases with screaming matches. There were Christmases with tears. And there were Christmases spent apart. Nevertheless, my childhood love for Christmas helped me to hold on to the hope that each upcoming Christmas would be "the Christmas" where everything would be perfect.
But what is perfect? Does perfect even exist? We all know that there is no one in this world who is perfect. The only thing I can think of to apply the word "perfect" to is a "perfect white sheet of paper" - no blemishes, no mistakes.
I don't know if I've ever had a "perfect" Christmas, but I can definitely think of some Christmases that were significantly better than others. In the past couple of years, my Christmases have been improving over time. Maybe it's because I finally resolved issues with my family. Maybe it's because I met my wonderful husband, and time with him just gets better every day.
This Christmas is my first Christmas not in remission since 2005. The last time I was sick at Christmas, I was very bloated on steroids and I was partially bald because of my brain biopsy (a surgery where the doctor extracts a piece of your brain out to examine it for inflammation - this is usually how PCNSV is diagnosed). I remember not singing my heart out to my favourite Christmas songs because I was self-conscious and my voice was still so weak from having been intubated. I was still so tired that the excitement of Christmas morning didn't keep me up talking with my sisters late into the night. I was so anxious about returning to school after the new year that I couldn't think beyond that. I felt so left behind in life that I couldn't see the future. Without being able to see my future, I didn't know what to hope for.
Alex and me, Christmas in Ottawa, 2009
I spent the next five Christmases from 2006-2010 in remission, and each one was more wonderful than the last. This upcoming Christmas, the Christmas of 2011, I am back on chemotherapy and prednisone because of my recent PCNSV flare up this last September.
But this time, this Christmas WILL be different. And this Christmas WILL continue to be better than the last. I am "grown-up" now. I am no longer the young, naïve, heavy-hearted 17-year old girl from six years ago. Although my vasculitis has returned, my old mindset has not. As a "grown-up," I've learned lessons in life that I have been wise enough to keep with me.
The first lesson is, obviously, that life is short. Don't wait for tomorrow to do what you can do today. Saying "I love you" isn't too often when you mean it every time. Remember the good times from the past, apply their lessons, and leave behind the bitterness. The present is unpredictable, so don't spend it wasting time stressing about the future, because the future is always just that, the future: something you can see but will always be reaching for.
I did not know these lessons at 17. Now that I am 23 - it doesn't make a difference that I felt the same fatigue symptoms as I did when I was 17, or that I'm on the same dosage of chemotherapy -it matters that I choose to make this Christmas different from the last time when I had a vasculitis flare up. Because I have learned these lessons, I have hope that this Christmas will still be wonderful.
One of my favourite Christmas songs is "My Grown Up Christmas List." I love how it tells a story of how someone's Christmas List changed as she grew up from being a child. I used to think that I was a person who was considerate enough to think about others. But looking back now, I see that everything I had always asked and wanted for Christmas revolved around me. This Christmas, I have a Christmas list for others. On this list, I wish for everyone who lives with an illness this year to have hope for a better new year. I also wish for their loved ones to share in their hope, and keep strong in their encouragement and support - because as a person with an illness, it really does make a difference when someone can give you strength when you're physically and emotionally drained. Also, I wish that others can continue to read my blog and share it with others - so that more and more people can become aware of my invisible illness. While other organizations are fundraising money to find a cure, people with vasculitis are fighting just to be noticed in the medical world.
This Christmas, what is your grown-up Christmas list? How areyou different now than when you were younger? How will this upcoming Christmas be different from the others?
"My Grown Up Christmas List"
Do you remember me
I sat upon your knee
I wrote to you
With childhood fantasies
Well, I'm all grown up now
And still need help somehow
I'm not a child
But my heart still can dream
So here's my lifelong wish
My grown up Christmas list
Not for myself
But for a world in need
No more lives torn apart
Dominican Republic, May 2008,
Children of the Nations Missions Trip
That wars would never start
and wars would never start
And time would heal all hearts
And everyone would have a friend
And right would always win
And love would never end
This is my grown up Christmas list
As children we believed
The grandest sight to see
Was something lovely
Wrapped beneath our tree
Well heaven only knows
That packages and bows
Can never heal
A hurting human soul
Being a spokesperson and walking at the
Children's Wish Foundation
"Walk for Wishes" in Burnaby, B.C., October, 2009.
No more lives torn apart
That wars would never start
And time would heal all hearts
And everyone would have a friend
And right would always win
And love would never end
This is my grown up Christmas list
What is this illusion called the innocence of youth
Maybe only in our blind belief can we ever find the truth
