"Wondering When"

Have any of you ever seen the movie "Tangled" by Disney, based on the story of Rapunzel? This movie was playing while I was at work this week, and inspired me to write this post.

The basic story of Tangled (spoiler alert!) is that a witch has kidnapped Rapunzel from her parents and has locked her up in a tall tower to raise as her own child. The witch's motive is not one of love but of selfishly hoarding Rapunzel's magical hair . For 18 years, Rapunzel is trapped in a tower . She spends her free time in a myriad of activities, all the while "wondering  and wondering and wondering and wondering: when will my life begin?"

And I'll reread the books

If I have time to spare

I'll paint the walls some more,

I'm sure there's room somewhere.

And then I'll brush and brush,

and brush and brush my hair

Stuck in the same place I've always been.

And I'll keep wonderin' and wonderin'

And wonderin' and wonderin'

When will my life begin?

When will my life begin?

I know I have asked myself that question plenty of times! I've asked myself "when will my life begin" during the troubled years of my childhood when I thought I would be forever stuck in a stressful home life. I asked myself this same question through the uncertain years of high school. And of course - I have asked myself this question daily through the chemo injections, the many medical visits, and the numerous days spent overnight in the hospital.

Rapunzel felt that the woman she thought was her "mother" was keeping her from starting to really live life. Have you ever felt something holding you back from truly living? Did financial circumstances prevent you from attempting to achieve a dream ? Did a person's words and possessive character prevent you from truly embracing life experiences? Has an illness taken hold of your body and prevented you from living the way you would like?

My answer is yes to all the above questions. I thought:

"If I had enough money, life would be easier and life can truly begin."

"If that family member was less harsh to me, I can actually enjoy life and let it truly begin."

"If I was cured from central nervous system vasculitis, then life can truly begin."

Like Rapunzel, I have felt "stuck in the same place I've always been." When I got drastically sick again last September, it seemed like my life would forever be in a cycle of "remission, flare up, getting back up again." Right now - as I have just returned to the work field full time, I feel that I am in the stage of "remission." But somewhere in the back of my mind, a little voice taunts me, "How long is this  going to last? How long will your medication help you before your illness flares up again?"

How do you know when your "life" has truly started? Is living life only when your heart is happy and your spirit is light?

A very wise friend said, "Don't wait for life to start...just start living."

Whether it's raining or sunny, you can choose to start living life already - without having to wait for the "next stage."  When you are in a difficult circumstance - an illness, financial hardship, negative relationships - your experiences are building you up for future moments in life. You are still living even when you "feel stuck." Life still goes on even when you feel like you are not moving forward at all.

"Every event in life can be causing only one of two things. Either it is good for you, or it is bringing up what you need to look at in order to create good for you." - Deepak Chopra.

Instead of wondering, "When will my life begin?" - Think instead, "I wonder how this waiting period in my life is preparing me and strengthening me for the future?"

Remember the caterpillar...when it thought it couldn't wait anymore for life to get better, it became a butterfly. 

 

"Every New Beginning is Some Beginning's End"

Summer is soon coming to a close and the autumn season will begin. While the official commencement of autumn is in the third week of September, people usually get into their "autumn" routine earlier on. Autumn signifies the beginning of school and regular classes. Children may initially resent the month of September because it is the end of the lazy hazy days of summer, while parents are happy to get back a regular routine. Families are enjoying being at home after a summer filled with road trips, weddings, family reunions, and other busy gatherings.

When I was younger, I was not a big fan of autumn. I thought it was the boring "in-between" season that signaled the end of summer vacation and the waiting period for winter and holiday festivities. I am one of those annoying people that loves the holidays…the Christmas decoration, the carols, the surprise presents, and snow. Maybe I loved Christmas so much because when I was growing up - no matter how much my parents were fighting - I can count on them to try and make Christmas Day worth the other 364 days of their arguments.

Autumn also symbolizes a season of change...the shades of sunset on the crunchy leaves, the air crispens, and the moon wakes up earlier than usual.

Last autumn - in 2011 - was a big season of change for me. While I was looking forward to starting my career in the United States after applying for my green card and getting my work permit, my health took an unexpected turn and I found myself hospitalized for a month. My brain was in status epilepticus - a state of non-stop subclinical seizures - for a whole week. Seizure medications would not work on me. The doctors couldn't find out what was causing my seizures until they found that my rare neurological illness had resurfaced again. My childhood illness found me in my adulthood and was threatening to take my life again.

Last September, I was laying in the hospital bed, contemplating this new abrupt twist in my life. I don't know when my illness will decide to flare up - I only hope to stay in remission for as long as I can. Last autumn, I was facing a familiar "beginning" - facing chemotherapy again, dealing with fatigue and other side effects, and once more - wondering where my life will go from here.

In the movie Hope Floats, Sandra Bullock says, "Beginnings are scary, endings are usually sad, but it's the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up and it will…" During the many scary beginnings in life, we get so caught up with the initial fear and anxiety that we forget that life is full of seasons of change. How you feel right now will not always be the case. I will not always be in chemotherapy. One day my fatigue will go away. Sadness is a temporary state of feeling, not a permanent way of being…I wish I had told myself all these things last autumn, but instead - I had to learn it the hard way.

Sandra Bullock was right though - when I gave hope a chance, it did float up. I was able to find hope even in the uncertainty of my incurable diagnosis. I learned that when I can trust God fully and place my hope in Him, there is no more room for fear - because He has everything under control. Whatever happens to me, He has a purpose for it.

Whenever I tell other people about the story of how I first got sick when I was 17 years old, I always end my story by saying how grateful I am that it happened to me. Without my illness, I would not have moved to the west coast, and chosen a university where I found a passion for my career in human services and met some best friends, and eventually - through those friends - I found and married the love of my life. Looking back on all the rewards and blessings that happened in my life, I would be face it all again.

This autumn, I have been blessed with a full recovery and good health even though I am still on a chemotherapy treatment plan. I am blessed that I am healthy enough to start working full-time again. I have been offered a job as a behaviour technician - working with kids who have special needs. It's wonderful to find a job that provides security and also has meaning.

It will be my first post-graduate job, and also the first job I will have since my last flare-up with CNS vasculitis. I am a little bit anxious about it. Will I be physically capable for this job? Will I be too tired at the end of the day? Will I have to take off too many days for medical appointments?

Beginnings can be distressing, but there is a seed of hope in every beginning - and when you give it a chance, it floats up.

Sandra Bullock said that "it's the middle that counts the most" - I guess that is another way of saying that the journey matters more than the destination. In this particular case, I guess I would agree. During my journey to remission, I have done my best to provide hope for others who struggle through this blog, online support groups, and even in personal messages. I have learned lessons about trusting God and finding purpose in the healing journey that many people do not get a chance to learn until their old age. I learned that tears can be symbols of strength - not weakness - because they show that you choose to still fight despite everything you are going through.

Now that I can say I am officially in "remission" - I have a new beginning.

Bon Jovi sings, "Every new beginning is some beginning's end." How true this statement is. Life is full of seasons of change and cycles of new beginnings. Through each season of change and new beginning, let hope float and guide you through.

"The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both lead to the same destination."  ~Marian Zimmer Bradley

"Firsts"

People don't really remember the first time they took their first step - because they were probably around 1 year old and that time is a blank space in their childhood. But I remember the first time I took my first step after my body had forgotten how to walk. When i was 17, I was diagnosed with a rare neurological disease that put me in a coma for a month. When I woke up, I was relearning to communicate and my body had to recall how to move physically. From learning to sit up on my own, and then being able to stand up - nothing was as memorable and wonderful as the first step I took all by myself during my physical therapy sessions. That first step gave me hope that everything will be okay, that there is hope for me to move forward.

 

I remember the first time I tasted food after spending a month tied up to a feeding tube. The doctors placed the feeding tube in me after I had fallen into a coma, and then they had kept it for a while because they weren't sure if my illness was also attacking my digestive system. I remember only being allowed to have ice chips for a while - and while ice chips may seem like the most boring item to a food connoisseur, at that time - I looked forward to having my daily portion of ice chips. Finally, when the feeding tube was removed - I had my first "real food" : green Jello. I actually hate Jello. I was never as drawn to it as other kids were. But I relished my first spoonful of green squiggly stuff. I had to be on a "soft food" diet at first - but at the time, it didn't matter because I knew my doctors were feeling more confident about my health and soon, I can eat what I was really craving. Shawarmas. Pork chops. My mom's cooking.

There are a lot of firsts in life. Sometimes we dwell so much on the negative side of "firsts" that we forget that there are also positive "firsts" as well. I could have spent years mourning my first hospitalization, my first time in the ICU, my first serious surgery, my first seizure. Instead, I want to remember the positive "firsts" in my life - the signs of hope in my life that were telling me that everything will eventually be okay.

Maybe you have forgotten all the positive "firsts" in your life. The first time you went on a date after a broken heart. The first time you applied for another job after being rejected in a previous interview. The first time you drove a car after having failed the license test. The first time you smiled at the sunshine after days of darkness.

Martin Luther King Jr. said, "Faith is taking the first step even when you can't see the whole staircase." Sometimes it is difficult to take that first step when you're afraid of where it might lead, or wonder if you can accomplish it. Nobody said first steps have to be done alone. Even toddlers held their parents' hands when they tried walking. The important thing is to take that first step. Bravely overcoming your past, your fears, and your anxieties - and trusting that the first step you take gives you the courage to climb the rest of the staircase.

The Invisible Half of America

You see us walk by you on the street. We sit in front of you in the city bus. We serve you coffee at Starbucks. We are behind you in line at the grocery store. We are the nearly 1 in 2 Americans who have a chronic condition.[i] This chronic condition may be due to a diagnosed illness, mental health issues, persistent side effects due to treatment, or constant pain because of a car accident.

Our chronic conditions are invisible…but we are not. We walk by you on the street and you do not know that we just had blood work done to check inflammatory levels. You see us sitting in front of you in the city bus and you do not realize that we are on our way to another chemotherapy session. We may be behind you in line at the grocery store and you do not know that we regularly purchase take-out because our constant fatigue prevents us from wanting to cook dinner.

We may look perfectly healthy on the outside, but our depression rate is 15-20% higher than the average person because of our chronic illness. [ii]

According to the U.S. Department of Health and Human Services, about 157 million Americans will be afflicted by chronic illnesses by 2020. That number is estimated to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million.[iii]

I was 17 years old when I was first diagnosed with a rare, invisible and incurable illness called central nervous system vasculitis. This is when my immune system attacks the blood vessels in my brain and can lead to a variety of neurological symptoms. The invisible illness in my brain started with thundering headaches. My family doctor passed them off as normal migraines. Afterward, I started having language difficulties; I picked up a book and I could not read the words. Later that night at the hospital, my brain slowly deteriorated and put me in a coma for a month.

If my doctors hadn’t been as competent and proficient in my diagnosis and treatment, I would have died.

However, surviving death was a minor hill compared to the mountains of challenges ahead of me. Trying to find a new sense of normal after my body had forgotten to walk and talk was the highest mountain to climb. I was learning baby steps like a toddler walking for the first time. I couldn’t voice my feelings. Instead, nurses came and showed me a “happy face” sign and a “sad face” sign. “How are you feeling Chelsey? Point to which one you are feeling today.” Words were scrambled in my head. It would be a while before these thoughts can express coherent words.

I am fortunate to be living in a period of advanced medical research because it wasn’t too long ago when this illness was only diagnosed post-autopsy. I have been privileged to have access to the treatment I need so I can live as normal a life as possible. I have graduated from university. I have volunteered in third-world countries. I have worked at jobs trying to pay off my student loan debt.

My body may go into remission – but as I learned six years after my diagnosis, it can flare up with a fury and overwhelm my life again.

Shortly after I got married in 2011, my illness returned with severe non-stop seizures and terrifying hallucinations.

Every time my immune system attacks my brain, I need to be treated immediately – usually with the combination of chemotherapy and steroids. Without such treatment, I would die or become a vegetable.

My invisible illness is caused by my own immune system. It can creep up on the blood vessels in my brain and spread like wildfire in an instant. To the naked eye, I may just seem confused and disconcerted. Take me to the ER for a brain scan and you can find blood vessels ready to burst because of inflammation.

No one could guess I am sick unless I tell them. People find it hard to believe I am on chemotherapy when I still have enough hair to tie in a ponytail. People cannot recognize that the immune system – the so-called protector against viruses – is also my worst enemy. Until there is a cure, I will always be at risk.

The difference between me and half of the American population is that I live each day with an invisible enemy…an illness that daily taunts me with symptoms and eager to rip apart my future.

                           

From September 10 – 16, join us in National Invisible Chronic Illness Awareness Week. With more people joining our cause, our voice can be stronger. With a louder voice, we can be heard even if our invisible illnesses cannot be seen.

****Are you on Facebook? Join the cause here for Invisible Illness Week.

To find out more about this week and how you can contribute or what you can learn, find out here

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[i] Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update). "Chronic Conditions: Making the Case for Ongoing Care".

[ii] Rifkin, A. "Depression in Physically Ill Patients," Postgraduate Medicine (9-92) 147-154.

[iii] Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update). "Chronic Conditions: Making the Case for Ongoing Care".

"Life is Like Monkey Bars"

When I was younger, I hated monkey bars. I just did not have the upper body strength to swing across the monkey bars with the same ease as my peers at the elementary school play ground. I tried. Really - I did. I would climb up one end, put my two hands on the first ring…hang for a couple of seconds, and then try to transfer my hands to the next ring. It was difficult for me. My furthest success was hanging on the second ring of the monkey bars before falling off.

"Life is like monkey bars…you gotta let go to move on" (Matt Case). When I was younger, I would clutch the ring too tightly and I was so convinced that I wasn't strong enough to move forward. I couldn't trust myself to let go, and eventually I would let go - but instead of letting go and moving forward, I would let go of the rings and just give up. Maybe if I had kept pushing myself - I could have gained the confidence to do better each time so eventually I can make it all the way to the other side of the monkey bars.

Unfortunately, there are too many people in this world in the middle of the monkey bars. They can't move forward - there's a paralyzing fear that is preventing them from letting go and climbing to the next ring. They don't have the faith to believe that they can accomplish this.

But in order to move forward, you have to be willing to let go - let go of the fears, the worries, the regrets - so you can continue forward. Sometimes we need help on the monkey bars. Children who don't have enough upper-body strength need a parent to boost them up on their shoulders so they can finish climbing the monkey bars and have a sense of accomplishment.

In life - who gives you the boost so you can have extra hands guiding you on your journey? Is it an encouraging friend? A supportive spouse? Loving family members? Maybe you think you don't have anyone in your life who help you, but remember that when you feel alone - God is always there. He is the invisible wind underneath your wings that can help you soar above the monkey bars if you wanted to do so.

"You can't move forward to the next chapter of your life if you keep re-reading the last one."

Re-reading the last chapter in your life can become an unhealthy addiction without you realizing it. Some people become obsessive about analysing everything that has ever happened to them and wondering what went wrong, trying to decipher where the breaking point was in relationships, or attempting to figure out the moment where they gave up on their goals. Some people keep dwelling on the mistakes they made - and they use these memories as a template for what their future will be.

But mistakes are not a template for your future - they can be lessons, experiences from which to gain wisdom, and arrows on the broken road leading you to where you were meant to be.

Life was not intended to be spent in the past or afraid of the future - life is a forward-moving journey. And if you must look back on the footsteps you left behind - look back with nostalgia and wisdom.

So break out of your emotional prison. Turn the page to the next chapter in your life. Hold hands with hope and strength, and move on to the next ring in the monkey bars. 

My Hope for You

Do you know someone who could use a fresh cup of hope? Can you think of someone who needs encouragement because they are going through a difficult illness? Please feel free to share this poem with them as a sign of encouragement. 

Counting your Miracles... Seven Years Later of Living with CNS Vasculitis

Seven years ago…on July 25, 2005, I was admitted to the Children's Hospital of Eastern Ontario for having stroke symptoms at the age of seventeen years old.


I have a rare neurological illness called primary central nervous system vasculitis. This is when your immune system attacks the blood vessels in your brain causing inflammation, and leads to a variety of neurological symptoms such as strokes, seizures, and coma. In my case, I have had all three and more. If you don't know my full story yet of how I have battled this illness for the last seven years, you can find out more in this link.


Seven years later - after surviving death, permanent brain damage, and cognitive impairment - I have learned a few lessons along the way that many do not get the benefit of discovering in their lifetime. This is what I have learned along the way.




1. Living in the present
People say, "Today is a gift - that is why they call it the present." I never truly appreciated this until death came knocking on my door again and reminded me that every day that my brain is functioning is a gift. Right after my honeymoon in 2011, my illness resurfaced again after 5 years of no symptoms. This life interruption caused me to withdraw my acceptance to graduate school for a masters degree in social work. One year later, I still think of what life would be like right now if my illness hadn't resurfaced. What would life be like if it had brought me down a different path?


But why bother wondering about these "what if" questions? Dwelling on the past will not change it - it just makes you less appreciative of what you have now. You may not be able to change your past but you can change your attitude towards it. Eventually - I came to be thankful that my illness interrupted my life when it did because it led my husband to the best job that has provided well for us, it urged me to rethink my priorities in life, and it confirmed my heart for helping those in need - especially those living with a chronic illness.


2. Leave the worries to God
God feeds the birds of the air and provides for them - and of course He would do so much for us. "Can any one of you by worrying add a single hour to your life?" (Matthew 6:26-27)


Worrying is stressful…stress takes away from your life, so really where is the benefit? This was a very hard lesson for me to learn as I am a Type A personality who needs to know everything that is going on, and that everything should have it's own time and place. When uncertainty hits…panic starts building and I need to come up with many back-up plans to fall on.


The most worrying thing that ever happened for me was when my illness hit me last September in 2011 - I had just moved to the United States and was not yet eligible for health insurance. My illness hit me with non stop seizures that lasted for a week, and then followed by a period of non-stop nightmarish hallucinations. Miraculously my brain survived unscathed and I was back on chemotherapy and prednisone for my treatment plan. But this month-long stay in the hospital cost us more than over a quarter of a million dollars…money that we did not have and probably will never have to spare. My husband kept saying to have faith, God will take care of us - but of course, I had trouble with believing something that could happen when I cannot see it. But as Christians, we live by faith and not by sight (2 Corinthians 5:7). My husband and I were very blessed when the letter arrived in the mail from the hospital…stating that we had been granted 100% charity care - we were debt free. The enormous medical bill had been forgiven. God definitely came through for us…and what was all my worries for? For nothing. I have learned that it is better to spend less time stressing and worrying about the worst possible outcome, and instead - spend this time leaning on God as your rock. Let Him carry you through the difficult times - exchange your worries for a lighter heart.


3. Rain waters the garden, just like tears water the soul
I used to think that crying was the symbol for weakness. I thought that if I cried - it meant that I was losing…losing an argument, losing a battle, losing at life…I thought crying meant that I was giving in.

From the last seven years of living with this neurological illness, there have been many moments where tears took center stage. And I know there are still many people today - who often cry themselves to sleep because of pain, regret, or worries. Tears can carry with them a healing power…it may not solve a problem, but it offers relief and often the resolve to continue fighting. Suppression of emotions can lead to depression…if you didn't have tears to express your anger, pain and sorrow - there would be a major physiological and psychological imbalance in your body that would lead to more distressing problems. Tears can purify stress and negativity.


So when the tears come - don't fight it. The clouds cry to water the garden, and we cry so we can water our soul. You don't need to schedule a time in the day for your "cry time" - but when the tears do come, let them spill - and then give yourself a gentle hug afterwards to remember that there is still fight in you, and it is only making you stronger.


Charles Dickens said, "Heaven knows we need never be ashamed of our tears, for they are rain upon the blinding dust of earth, overlying our hard hearts."


4. Releasing pain
When you live with a chronic illness, that does not mean all your problems are health-related. It means that you have to live life like everyone else…with your health in mind. I may have almost died at the age of 17 years old, but that was not as difficult as the time when I left my parents' home a year later because of my step-dad's anger. And living with the side effects of chemotherapy was probably just as painful as family heartaches, broken hearts, and anger about the childhood that was robbed from me.


If you are already living with physical pain, why hold on to emotional pain? When you are at a tug of war with anger and blame, you are only wasting your time and strength at a battle with yourself. Release the rope and let it go. Give the pain and hurt to God. Join a support group or talk to a friend and vent your feelings for a good cathartic purge. Don't stack up boxes of pain in your heart - it only weighs you down. And a healthy life starts with a healthy spirit…so release the pain, hold on to hope instead.


5. Find your place of healing
I have started reading a book by Joni Eareckson Tada called "My Place of Healing." Joni is a wonderful engaging author who writes about the difficulties of living as a paraplegic in a wheelchair, experiencing severe pain, and also dealing with cancer. While life has given her many reasons to be bitter, she has used her experience and her faith in God to write a book about remission doesn't always necessarily mean the abatement of symptoms, but it can mean a new attitude to living with the chronic symptoms that you have, and choosing to touch the lives of others through how you live your own life. She says that she has found her place of healing in her wheelchair, because that is where she has brought God the most glory.


I had thought I would bring God glory the most by working as a medical social worker. I thought I could bring joy and comfort to those who needed it most within that career. But when illness interrupted life - I settled on being a stay-at-home wife until I felt that I was fully recovered. Looking back now, I see now that maybe that was where my place of healing was supposed to be. Maybe I was meant to start writing this blog to encourage others around the world who live with a chronic illness or have suffered from life's thorns. And when the time comes for me to move forward to a different place of healing - I trust that God will guide me to where He wants me to be, not where I think I should be.




6. Live - don't just stay alive
Some people with a chronic illness become afraid to live life…and it is sad to see people base their every decision and emotion on their illness. Yes it is true that sometimes people have to be more careful of what they do because of their health - but you shouldn't have an attitude that is ready for your funeral. Laugh harder, smile bigger, love deeper. Live life as beautifully as you can - your life is a testimony to others and an example of faith and strength overcoming obstacles. As Tim McGraw sings, "Someday I hope you get the chance to live like you were dying."


7. Count your miracles.
Some people with my illness unfortunately live with permanent cognitive disabilities or paralysis. I have been blessed to have survived the possible permanent damages of this disease. There is no cure for CNS vasculitis – not right now. I live each day with the possibility that my immune system might attack my brain again. But as I have learned on the way, miracles are not out of reach. 


My little sister wrote an essay about my medical journey. She quoted Albert Einstein when she began her essay with, “There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.” Despite everything I’ve gone through, I am happy that I now can see everything as a miracle. Every step I take reminds me that I can walk. Every vibrant color I see reminds me I’m not blind. The fact that I was able to write this story means that I still can read and write. If my illness has taught me anything, it has taught me how to count miracles.


Sometimes your story brings you through trials where you learn how to walk through fire. Sometimes perhaps you are meant to learn from other people's stories.


So count your own miracles. If you have also learned these seven lessons in your life, you too have many miracles to count.


If you value your present time more than you regret the past or worry about the future… that is a miracle.


Every time you leave a worry to God and decide to fully trust Him about it…that is a miracle.


After you cry and resolve to keep fighting because you are stronger than you think you are…that is a miracle.


If you have released anger and pain and have given forgiveness to people who haven't even asked for it…that is a miracle.


If you have found your place of healing where you can touch the lives of others most through your personal story…that is a miracle.


If you are living each day vivaciously rather than just waiting for your last day on Earth to come..that is a miracle.


If you are able to count all these miracles in your life and be thankful for them - even the smallest one - that is also a miracle in itself.


So count your miracles…and don't wait seven years to be thankful for them.

"Nowhere" vs. "Now Here"

How do you know when you are "nowhere" or "now here"? Is there more than just a little space of difference between the two words?

In the last couple months since I have finally stopped my chemotherapy pills and moved on to a different drug for my maintenance medication, I have been waiting for the moment when I can finally say, "Today I am in remission!"

The medical dictionary defines "remission" as "abatement or subsiding of the symptoms of a disease." I know some people who are doing well with their illness, but refuse to call themselves "in remission" until they are off all medications completely. As for me, I call it "remission" when I can live my life freely uninhibited by symptoms or traces of my illness. For central nervous system vasculitis, there are many people who are unfortunate to be living with traces of its neurological symptoms, such as memory loss, trouble with word finding, and other cognitive abilities. I have been blessed to not have any permanent side effects of my illness since my diagnosis, despite all the close calls in the ICU.

I have started looking up jobs online recently, preparing for the day when I feel like I am fully prepared to return to "where I am supposed to be" at this point in my life. When I was seventeen years old - newly diagnosed and just recovering from a coma - I did a month of occupational therapy. Some people think occupational therapy is only for people with severe physical disabilities..for example teaching someone without any hands how to put on their shoes. But people who have just had a major illness flare up can need occupational therapy too…they need to know how to live within their "occupation" with this new illness, or new onset of symptoms. Occupational therapy helps people try to return to a new "normal" with their illness. At 17 years old, my "occupation" was simple - I was an adolescent, a student. But at 24 years old, asking myself what my "occupation" is becomes a more difficult question. I am a young adult, a wife, a university graduate.

The last month has been very busy for me. My husband and I just moved to a new home and I spent a lot of time packing and unpacking. During this busy month, I have had two weddings where I had been the coordinator…and if you've never been a wedding coordinator before, take my advice and always wear comfy shoes even if it doesn't really match your pretty dress…you do a lot of running around!

After each wedding, I have awoken the next day exhausted…dedicating myself to a day of rest. It makes me wonder, "Am I really ready to pursue a full time job in human services? Am I ready to be on my feet forty hours a week? Am I ready to take on the emotions and pleas of the people I will serve?"

In the book "When the heart waits" by Sue Monk Kidd, Kidd mentions that we all need an adjustment time…a time for wobbly wings. Butterflies don't just burst out of their cocoon, soaring to the sun…they need time to integrate to the changers around them. We just need to be patient with ourselves and with our wobbly wings. 

During the last couple of months, I kept thinking that I was "nowhere" - that I was stuck in a limbo between being sick and being in remission. The word "almost" popped up a lot…I am almost healthy, almost energetic, almost ready.

While I was "nowhere," I spent so much time reliving history or devising the future - that I forgot to simply enjoy where my life is at that moment…even if my wings were wobbly. A popular song by Bon Jovi once said, "Right here right now, is exactly where you're supposed to be." I realized I needed to stop thinking that my life was going "nowhere" and that my life is "now here." I need to take advantage of this time in my life…and so during this time I refined my homemaking skills, started this blog, started an online support group, baked cupcakes and wrote encouragement cards for people in the hospital, and decided to get back in full touch with God.

I can't pinpoint the exact day I went into remission when I was 17. It happened sometime during my first semester in university, when I realized I was living independently, my energy was full, and my "occupation" was unhindered by my illness. Remission didn't happen overnight, it happened to me while I was living my life…and came as a lovely gift.

Five years later, I am going into my third round with remission after my third flare up with my illness. I realize that you can't just wake up one day and declare that you are in remission. Waiting to say you are in remission is like waiting on a kettle to boil on the stove. You wait by the stove for it to whistle - saying that it is ready. Eventually you decide to do something else with your time instead of standing by the kettle. When you are not looking, the kettle starts simmering, smoking, and then comes to a rising boil. Finally, the loud whistling lets you know that it is ready.

Remission happens when you are still adjusting to your wobbly wings. Remission starts to simmer as you step out of your comfort zone a little at a time. Remission rises to a boil when you test your strength and find that you can accomplish more than you initially thought. And remission gives you a loud "whistle" when you realize that you are already "now here."

Remission itself is a journey of transformation…from the cocoon to wobbly wings…from "nowhere" to "now here." 

When Pain Becomes Useful

When you are in deep pain - whether it be physical or emotional - someone telling you that this pain will be useful someday is probably the last thing you want to hear.

But it is true - you may not see it right now because you are not omniscient, but your pain today can have many useful reasons in the future. When people bring regular physical exercise back into their routine, their muscles ache and are in pain from being used after having been stagnant for such a long time. But these people persist and continue exercising because they know that "pain is gain," and that the pain they feel at that time is just a few steps away from a healthy fit body.

However that is not the type of pain I am talking about. I am talking about the physical pain that bothers you in the night and prevents you from getting good sleep. I am talking about the painful heartbreak that you thought would never heal. I am talking about the pain of saying goodbye to someone you love and never seeing that person again. I am talking about the pain that comes from a betrayal and you don't know how you can trust others again.

I have felt great pain in my life. This is not a "my pain is bigger than yours game" - everyone's pain is different. And even though I am only in my mid-20s, I have already felt pain from illness, betrayal, and brokenness - even before I turned 20 years old.

During many of the painful times in my life, I couldn't see past the pain. But looking back now, I see how all that pain helped shape the person I am today. It led me into a career path in human services. My previous pain helped me empathize with people who are going through illness, struggling with broken hearts, or feeling lost in the world.

If you are in pain right now, remember that rainbows can't happen without a little rain. Your pain right now can be a few steps away from the best day in your life. Your pain could be bringing you to the best friends you will have. Or your pain could be shaping you into the best possible person you could be. My pain did all of the above for me. I am grateful for how my pain eventually led me to meet my wonderful husband, meet the greatest friends I have today, and helped me become a much better person than I was before my illness attacked me.

And if you have overcome pain in your life, maybe today is that day when your pain becomes useful. How can pain be useful?

Your pain can help you empathize with someone who is going through a similar situation as you. Because you have felt a similar pain, you are in a good position to hold that person's hand and be an example of someone who has overcome such pain.

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing…not healing, not curing…that is a friend who cares." ~ Henri Nouwen.

Your pain can also be shaping you to be a better version of your previous self. Before my illness, I had less empathy, less patience, less desire to help the less fortunate in the world. My main ambition was to make money and advance in the world with an important career. Looking back on the person who I used to be, I am so grateful for who I am today.

Henri Nouwen also said: Who can save a child from a burning house without the risk of being hurt by the flames? Who can listen to a story of loneliness and despair without taking the risk of experiencing similar pains in his own heart and even losing a precious piece of his mind? In short: "Who can take away suffering without entering it?"

When your pain becomes useful and you are helping someone's suffering, you will be able to enter into that person's suffering because your pain has made you strong enough to handle it. You acquire the strength that you overcome.  And if you feel like you are not ready to enter into someone else's suffering yet, then give it time. The annoying thing about the word "someday" is that you don't really know when that day will come…but when it's there, you will know it.

"On hope and illness"

I wrote this for the new website I just set up. Please check it out here


Having an illness reminds us of the fragility, sacredness, and brokenness of life. With illness, we learn that we are not invincible and nor are those we love. When you have been diagnosed with a life-changing illness, that illness becomes like a pair of shoes that you wear to walk in on the path of life. Sometimes the shoes can pinch your toes and make walking difficult and painful. Sometimes the shoes fit perfectly and your walk is comfortable and carefree. But it is important to remember that the shoes are on your feet, and not on your face. One who walks in a bad pair of shoes still has the choice to walk with a smile on his or her face. Similarly, our illness affects our physical body…but we have a choice on how it can affect our response to life. 

Walking down the path of life with an illness is a serious but hopeful journey. Sometimes your illness redirects your path. Sometimes you are walking on steady ground and sometimes it is rocky. Hope encourages us to continue moving forward even though we do not know where we are going. 

Hope is finding joy in waiting for that which we do not know or are uncertain about. Hope is our comfort when we are waiting for test results, waiting for appointments, waiting for symptoms to subside, waiting for healing, waiting for a cure… 

Having hope means that we know there are people who care about us. Having hope means that we promise ourselves that we will never give up even when others have already done so. Having hope means that we will always look for a detour when we reach a dead end. 

To hope means that we will try again until we succeed. To hope is to believe that we can be the exception to the statistics. To hope is to trust in something that has not yet happened. 

Hope knows that not everything has the perfect answer. Hope knows that tears are part of every difficult journey. 

Hope encourages us to take the next step. Hope encourages us to persevere. Hope encourages us to give hope to others. 

Hope is a light that shines on moments of darkness when you get a bad test result, when your illness flares up, when symptoms get worse. Hope is the power within you to control how you will respond to life’s circumstances. 

Hope holds hands with love and joy. Hope stands up to pessimism and fear. Hope says “yes” when everyone else says “never.” Hope does not believe in the impossible. 

When doubtful questions arise, hope is the answer. 

During your journey down the path of life, let hope guide your footsteps. 

Lessons from a Butterfly

When people think of butterflies, they often think of it flying about with its colourful wings, reflecting the rays of sunlight. People rarely think about the steps the butterfly took to get where it is now…the time spent in the cocoon, incubated in darkness, waiting to be fully formed so it can be strong enough to fly. Maya Angelou says, "We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty."

Every butterfly started out as a caterpillar…and many inspirational stories of hope have their beginnings in a time of darkness, pain, suffering. So what then can we learn from the butterfly?

Incubating in Darkness

Susan Monk Kidd wrote in When the Heart Waits, "To incubate means to create the conditions necessary for development." Such conditions include darkness. Kidd states that darkness is crucial to the process of incubating a new form of life, for it to grow and emerge. Even babies are incubated in darkness in the womb while they wait for birth. Therefore, waiting in darkness does not have to symbolise a terrible process. We can be grateful for this period because this darkness has created conditions necessary for our development and growth.

If you have read my previous post on "Growing from Pain," you can see how darkness in one's life can actually be a positive thing. This time of waiting in the dark can be spent waiting on God to change you and develop you to be the person He wants you to be to further His purpose.

I have waited during several periods of darkness in my life. My greatest period of darkness was when I had just turned 18 years old. I had just been diagnosed with a rare neurological disease, and several months later, I was cast off by my immediate family because of stressful family issues. I was eager to start university in the fall of 2006 at the same time of my peers, but I was not yet ready. My stamina was still not up to par. My heart was still healing. My wings were not fully formed. I emerged from my cocoon in January 2007, after my period of waiting and being incubated in darkness, and found that I emerged at the perfect time to attend the university where God wanted me to attend so I can meet the friends He wanted me to meet. During my first semester of college in spring 2007, my wings were strong and agile. I got a part-time job, a leadership position, enrolled in a fitness class, and found the heart to agree to meet my biological father.

My next period of darkness occurred when I was 23, a couple months shortly after I just got married. My illness had flared up for the second time that year, and I was frustrated and angry at God, wondering why He couldn't let me live a normal life.

But I think God was saying, "I want more than a 'normal' life for you. I want you to develop a heart of compassion. I want you to use again the gift of writing I had given to you. I want you to reach out to the broken and hurting people and give them hope…hope that I can give you while you are waiting in your darkness."

"Like the butterfly, I have the strength and the hope to believe, in time I will emerge from my cocoon…Transformed."

There is a parable about a man who found a butterfly cocoon and decided to save it. One day a small opening appeared, and the man watched as the butterfly struggled to force its body through the little hole. After a while, it seemed like the butterfly could not make any more progress. The man then took a pair of scissors and snipped off the remaining bit of the cocoon. The butterfly emerged easily.

However, it emerged with a swollen body and small, shriveled wings. Although it had emerged from the cocoon, it was unable to fly because the wings were not fully formed.

The moral of this story is that although he had good intentions, the man did not understand that the butterfly was not yet ready to emerge from the cocoon. It needed its struggles in the cocoon to make it stronger so that it can fully form its wings. The incubation in darkness was creating the conditions necessary to ready its wings so that it can take flight once it emerged from the cocoon.

If we try to break out of our cocoon too soon, we may emerge with shriveled wings and are unable to reach our full potential because we were impatient during our time of waiting.

Patience has never been one of my strongest virtues. I am still "waiting" in my cocoon right now. A couple months ago, I was filling out an application for the Master's in Social Work program at the University of Washington. I figured that since I was not able to attend my MSW program the year before because of my illness, I can try again. But then I realized, as much as I have the right intentions and the desire to attend graduate school - I was not ready yet. My medications were still not stable. My stamina was still not to par. My wings were not yet fully formed. I was still waiting on God to create the right conditions so that when I emerge, I can fly easily and freely. Today, I trust God that when I do finally emerge from my cocoon - my time spent incubated in darkness will have given me fully formed wings for His purpose.

Many Christians also see the butterfly as a "symbol of hope" as it characterizes the process of disappearing into the cocoon and appearing dead, and then emerging into a beautiful and more powerful creature than before. Like the butterfly, when we emerge from our cocoons, we can trust that we will be stronger than before. The transformation completed during the incubation in darkness has enabled us to fly freely and show off our beautiful colours.

Where are you in life right now? Are you spending your time, incubated in darkness, waiting on God to transform you? Are you struggling to break out of your cocoon?

So whether you are waiting in a cocoon or flying around as a butterfly, relish the moment. Waiting in the cocoon is only preparing you for a stronger, more beautiful version of you. And if you are a butterfly, the colours formed on your wings reflect your lessons learned through your struggles during your time of incubation in darkness.