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Tuesday, August 6, 2013

Confessions of a Type A Personality

    Hello. My name is Chelsey. And I am a Type A Personality.

    I am not going to go into the "nature vs. nurture" debate here to discuss how I came to be the way I am…although I do believe the "nurture" part definitely played a large part in molding my approach to life.

    Being the top student in my class was not really that important to me until junior high, when I realized that I kept receiving high grades without much effort. Soon, my competitive streak kicked in and I thought, "Hmmm…imagine my potential if I actually applied myself and put more effort." Efforts turned into goals, goals turned into ambition, and ambition turned into competition. If I wasn't competing against someone else, I was competing against myself. If you are a FRIENDS fan like me, that may remind you of Monica Gellar when she said, "I am in a competition with ME - the best kind of competition!"

    My family raised me to always do my best. And after that, to be better than my best. "You're so smart. You have so much potential. You can do so many things."

    And yes - with smarts, ambition, and the drive - I was ready to conquer the world. I had my whole life planned at the age of 17. I was going to graduate at the top of my class, receive a scholarship at a prestigious school where I would do a double major in modern languages and politics, and then move on to law school. My linear plan was set - bam, bam, bam - all I needed to do was to make the most of my time. There was no time to waste, only deadlines and overtime.

    But then at the age of 17, life took a drastic turn that forever changed my perspective on time.

    I became diagnosed with an incurable life-long illness called central nervous system vasculitis, a neurological illness where my immune system becomes overactive and attacks the blood cells in my brain. As a result, I could suffer from multiple neurological symptoms such as coma, seizures, and strokes. (For a full story on my illness, please click here). Without a cure, I know not when my illness may attack again. God has blessed me three times so far with full recovery after each flare-up. I do not live with the disabilities that many people who live with this diagnosis must endure.

    During my first flare up in 2005, I was hospitalized for three months. I woke up from my coma near the end of August, and one of my first questions was, "Has school started?"

    You would probably think that I would have milked this opportunity to lay around in bed, indulging in leisure, and using my illness to push off finishing my senior year. But not me…with a central line in my heart and an IV hooked to my arm, I was still writing letters to my teachers requesting for homework so that I can keep up with my class.

    Determination isn't always such a detriment. It was determination that propelled me to defy doctors' prognoses and prove that I CAN still succeed, even with this disease in my brain. They were convinced that I would live with cognitive disabilities for the rest of my life, but with hard work, I recovered fully, graduating on time with my senior class with the top of my class.

    But CNS vasculitis had interrupted my plans. Since I had a late start to my senior year, I was not able to meet the deadline for university applications. I took a six month hiatus and reevaluated. I decided to move to the west coast and start my university career in January. This move turned into one of my biggest blessings in life as I came to find my passion in social sciences, encountered wonderful friends, and eventually met and married my husband.

    Five years had passed by without my diagnosis disabling me in any way. In 2011, I had applied to the social work graduate program in Toronto, and was eager to begin my graduate. I had my two year outlook: get married, move to Toronto, go to grad school, graduate with an MSW and start my planned career.

    But even the best-laid plans can be interrupted unexpectedly, and once again my illness resurfaced and forced me to reevaluate my priorities. My husband and I decided not to move, and that I would postpone graduate school. Graduate school is - of course- very stressful, and stress would only exacerbate my illness and impede recovery.

    My bachelor's degree is only in social sciences, with a certificate in human services, a concentration in sociology, and a minor in political studies and psychology. It may all sound great on my resume but it is still not enough to start a social worker's career without an MSW.

    I did recover from my flare up in 2011, but once again, priorities shifted and my goals became muddled. What can I do with my life now? Although I still desired to get my masters degree, I was not sure if it was worth investing the hundred thousand dollars in tuition at an American university (as opposed to investing ten thousand dollars in a Canadian university as originally planned).

    My husband started a new career path in IT that he enjoys. I started a new job as a behavior technician working with teenagers and children who have special needs, but even at that job, I hear the voices of my past whispering, "You're so smart. You can do so much more. You have so much potential. This is not enough. You are wasting your talent, wasting your time…you are wasting your life."

    The dangers of having a driven personality is that sometimes you don't know exactly where you are driving, you just have this sense of urgency that there is always something better you can do, there is always that next goal to strive for, there is no peace in your current circumstance.

    I think it takes great strength to be able to reevaluate priorities in life, and accept that there are some things we cannot change, but we can always change our perspective. Type A personalities are all about control and are often void of spontaneity. But as I have learned, a driven personality doesn't always drive you to where you need to be. Sometimes it takes greater strength to just pause in life, appreciate the present, and reflect on our current blessings rather than always focusing our mind on what is next on the list.
      
    I went to church last weekend and the speaker (Adam Carpenter) said something that really resonated with me. He referred to the allegory often mentioned in the Bible of people as sheep and God as our Shepherd. He says that in Biblical times, the shepherds were the ones who guided their sheep through the pastures. They named them. They cared for them. Sometimes they were willing to risk their life to protect them from wolves and other predators. Nowadays, sheep no longer need much of a shepherd. There are shepherding dogs trained to drive them around in packs. Farmers can drive vehicles to urge the sheep in the direction that they want. But the speaker mentioned that we were not meant to be driven, we were meant to be led. I need to let God lead me rather than let this world drive me around crazy making me believe that I am never going to be good enough. I need to stop putting God in the backseat and let Him be the one who drives me to what I want to do with life, not personal ambition.

    It's difficult living with a chronic illness and a Type A personality. Voices still pester me and say, "Why aren't you going to grad school? Didn't you plan a better career for yourself? Why are you resting? Don't you know there is so much to do?"

    It's just a matter of perspective. I need to appreciate the present rather than processing it as how I think it should be. Retraining my mind has been a difficult process, but I am getting there. I still bake too much food when people ask me to bring dessert to a potluck. I still occasionally scan Craigslist to see if there any advertisements for jobs that can help advance my career. I still have that competitive streak when playing board games. Meanwhile, I remind myself:

    But competition, determination and ambition don't drive my life anymore. I have learned to be a person who is led, rather than driven. I have learned to befriend time rather than make it my enemy. I have accepted that there are some days where I may be too tired to clean the house, and sometimes my brain just needs to shut down and watch a silly movie. 

    I need to remember that WHO I am is more important than what I DO.

    My journey is the journey that God has given me and I shouldn't compare it with that of other people. Envy and regret only distort reality and keep me from accepting and appreciating the positive aspects of my own life.

    I need to stop anticipating "tomorrow" and live in the "right now."

    Sometimes I need to save my energy for a battle worth fighting. Fighting for my health is more important than fighting for my career.

    1 Peter 4:11 says, "If anyone ministers, let him do it as with the ability which God supplies." Therefore I am never too weak, too sick, too small, too poor, or too "anything" to serve God - I just need to have the heart so God can use me. And being God's instrument in this world is higher than any type of worldly success I could have envisioned for myself.

    "When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left and could say, I used everything you gave me." Erma Bombeck

    My name is Chelsey and I am a recovering Type A personality.

Tuesday, June 25, 2013

Redirection


I am currently working as a behavior technician in a high school with teenagers who have special needs and severe behavior issues. As a "behavior technician," my job is to help adapt their behavior to be more appropriate in its social context. In this job, we use a lot of "redirection." Instead of saying to someone "No don't do that," we tell them to do something else instead, in order to replace the unwanted behavior with a preferred behavior. 

For example, maybe my student is throwing a tantrum and pounding on the walls. Instead of saying, "No don't do that!" - I would say, "Come and bounce on your ball."

The special education teacher explained that these kids do not respond well to the concept of "no" or "don't do that," especially when they are lower functioning. Redirecting them to a calming activity or getting them to engage in something else helps them cope and cool off.


I am not really sure what is going through these kids' heads when we redirect them. Maybe they think we are punishing them, but really - as a behavior technician - I am helping guide their behavior so that they can be safer and happier. 

A lot of times in life, we reject redirection. We do not like the idea of abruptly changing our plans due to some interruption. We think that nothing will be as good as the plan we already had in mind. We forget that if our plans must change, it's because God has planned something better for us. 

I did not grow up with the best childhood. I longed for the day when I could escape after high school graduation and live my own life. I planned all my high school classes so that I could get the best grades and the requirements to be accepted into a university with scholarship. I was on my way to what I thought was freedom and happiness, but instead - my life was interrupted by an unexpected diagnosis that altered everything. 

The summer before my senior year of high school, I was diagnosed with central nervous system vasculitis - where the immune system attacks the blood vessels in your brain causing severe neurological symptoms such as come, strokes, and seizures. I may have survived a death sentence, but the long recovery process weighed on my heart as I realized that I had lost everything of which I was certain. It was not certain whether or not I would graduate high school on time. It was not certain how much longer I would have to stay on chemo. It was nor certain about whether or not my brain would return with the same intellect I used to have. I lost my sense of independence, my confidence, my direction. 

During that time I could not see it, but God's hand was bringing it all together to lead me to something greater. Eventually, I did graduate high school on time. Because I had missed the deadline for university applications, I took several months off to live with my aunt and uncle on the west coast. There, I decided to try out a small Christian university that I would have never considered before. At that school, I found my calling in human services, met my best friends, and through those friends I eventually met the love of my life. 

My husband and I were planning on moving to Toronto where I was recently accepted in grad school for the social work program. However, after six silent years, my childhood illness resurfaced and made us rethink our priorities. We chose to stay in Washington and reluctantly, I accepted the fact that grad school was not a good option for my health at that time. 

After we made the decision not to move, my husband eventually changed careers and found a job in a company that provides well. Right as we were settling down, my illness flared up again with worse consequences then the last. I was hospitalized for a month due to intractable seizures. Looking back now, it was a good thing this had not happened while I was attending grad school. 

God healed me again, but this time - it took a while for me to find the blessing in the storm. It seemed like my illness was bound to keep interrupting life until a cure was found, and who knows when that would happen. 

For now, I just remember to to place everything in God's hands. He can already make beautiful things out of the dust, and he can make something beautiful out of any situation. It takes a lot of practice to be able to say "yes!" to redirection in life...but I would rather take God's redirection than any direction I had planned for myself.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)

Monday, April 8, 2013

That Solid Place....Viewing Life's Problems from a Spiritual Perspective


It's been a while since my last blog post…apologies to my loyal readers! My job has been stressful and energy-draining at times…it is nice to get in touch with my writing again and I hope that my words can bring some encouragement to your own day.

I work as a behavior technician at a high school. My job involves working with autistic teenagers and children who have severe behavior problems. At this time, I am not sure how I feel about pursuing this career track in human services. Several years ago, I had envisioned myself as a medical social worker - I enjoy reaching out to others and bringing perspective to their pain so that they can remember that even the smallest shred of hope can light up the dark. However, my five years of remission ended and my illness prevented me from going to graduate school to pursue this career track.

Making plans for your life is difficult when you live with a chronic illness. After I realized that I will not be going into medical social work after all, I felt stuck…motionless…wondering about how would I move forward in life when I can never be certain about anything. How do I plan a career when I do not know the next time my illness will flare up? How can I hope to have children someday if I do not know how much more chemotherapy I might have to endure, which endangers my fertility? How can I plan anything long-term when I have epileptic discharge occurring in my brain, setting it up for a seizure at any time?

Recently, I started reading another book by Henri Nouwen, "The Inner Voice of Love." He wrote it during an uncertain time in his life when he also wasn't sure about how he can move forward in life from the depths of his brokenness and despair. He was going through a different situation but he also felt a similar physical and emotional kind of pain. This book is basically a published journal of his musings during this heart wrenching time for him. He wrote a chapter titled, "Always coming back to the place that is solid." He writes:

"You have to trust the place that is solid, the place where you can say yes to God's love even when you do not feel it. Right now you feel nothing except emptiness and the lack of strength to choose, But keep saying, 'God loves me, and God's love is enough.' You have to choose the solid place over and over again and return to it after every failure."


What is solid in your life? Careers start and stop. Friends come and go. Marriage has its ups and downs. Kids grow up and move out. Health symptoms can vary on a wide spectrum of pain.  

The dictionary defines solidness as a "state in which a substance has no tendency to flow under moderate stress, resists forces that tend to deform it, and retains a definite size and shape." Looking back on my past experiences, I cannot tell you that I was the definition of solidness. I did not retain my faith the way I should have when dealing with my anger in my home situation during my childhood. When I was diagnosed with a devastating illness, my resilience was at zero capacity. My faith was shaken. I could be here and gone tomorrow…what is there in life that I can depend on?

It took some time and learning that helped me find my "place that is solid." Remembering that God's love will never fail me helped me to move forward. Corrie ten Boom said, "If God sends us on strong paths, we are provided strong shoes."

After facing trials, often we pray to God and say, "Thank you for lifting me out of this trial…thank you for helping me overcome this with your help. Thank you that it's over." But rarely do we thank God for letting us endure that trial. When we find that we have nothing left in us that can help us overcome what we are facing, that is when we turn the focus of our faith toward Him. We look beyond our weaknesses to His strength, and instead of relying on our own wisdom to solve our problems…we give Him full control.

When I was 17 years old, I thanked God for healing me from a lamentable illness that almost took my life. However, it took me several years later to finally thank Him and say, "Thank you God for letting me walk through the trial of living this illness with you…thank you for using this illness to let me grow deeper in my faith and letting me live in a way where I put important things first, and learning to trust in your love even when I don't feel it."

Sometimes the things we can't change end up changing us…and when God is at the center of that change, you can be certain that the change is for His greater good.

I don't know what is going on in your life right now. If you would like to drop me a message, I would love to send a reply to you. Maybe you are having trouble with stress at work like I am. Maybe you are experiencing trouble in your marriage. Maybe your pain symptoms have been too unbearable to let you fall asleep peacefully. Whatever you are going through, remember that you can always return to that solid place…where - as a popular worship song says - God's love never fails, never gives up, never runs out on you. 

Thursday, February 7, 2013

Please help me spread hope and raise awareness

This is very near and dear to my heart - please please - vote for my video for the Neuro Film Festival. I hope for my video "Living with Hope and CNS vasculitis" to win the "fanvote" so that it can be featured at the convention for the American Academy of Neurology. This would be a major step in raising awareness for my rare and incurable brain illness that causes my neurological symptoms such as coma, hallucinations, strokes and seizures. 

Together we are stronger. 

Much thanks to my friend Kai Chinn for producing the video.

Please click HERE to go to the website and vote. You will need to have an account with the American Academy of Neurology to vote - they just want your contact info but you don't have to subscribe for anything. It's so that voters can only vote once per account.


My video title is : Living with Hope and CNS vasculitis

If you want to know more of my full story on my illness and living with hope, please click here to a previous blog post. 


Please share this with your friends and family and encourage them to vote as well. 

Monday, October 15, 2012

"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. 


 


Wednesday, September 19, 2012

"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



Friday, September 14, 2012

"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.





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