"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

---

[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.