"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".