Christmas Song #3: In search of meaning, "Where are you Christmas?" by Faith Hill

I love the song, "Where are you Christmas?" by Faith Hill. If you read my previous post about "My grown-up Christmas  List", 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 Christmas when 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.