What will you leave behind?

 

I heard this song on the radio when I was young, and was very intrigued with the story and the lyrics. It tells a story of four people on a bus - a farmer, a teacher, a preacher and a hooker. The bus got into an accident, and only one person survived. The song then goes to say what each person left behind on earth before he or she died. The farmer left behind a great farm for his son. The teacher left behind wisdom given to the students. And the preacher left his Bible and gave it to the hooker. The hooker read the Bible to her son, and the son became a preacher and shared this song.

I don't know if this song is based on a true story, but it does have a powerful point - that we don't know when God decides that it is time for us to meet Him. But when that time comes, the song says: "It's not what you take, when you leave this world behind you. It's what you leave behind you when you go."

My parent's told me that when I was in the ICU, I almost died 3 times when I stopped breathing, one time I was losing too much blood, and the other time my blood pressure had dropped way low. If I had died at 17, I don't know how much of a legacy I would have left behind. People at high school would have said, "She was a sweet girl. Very smart. Had good leadership skills. She loved theatre." People from church would have said, "She was great with kids. She volunteered a lot."

But while I was in the ICU, while the doctors were frantically trying to diagnose me, maybe God thought, "No - I have more plans for you, Chelsey - you are not going yet."

And I am so glad I didn't die.  I think I have done much more in the 6 years following my illness, then I did in the first 17 years of my life when I was perfectly healthy. After my diagnosis, I went to the Dominican Republic and helped families in need, and played and sang with orphaned children. I volunteered my time with at-risk youth. I played music for the elderly at the nursing home. I helped give food and clothes to the homeless.

I got sick again in September 2011. I was having constant subclinical seizures, and the doctors told my husband that I may have permanent brain damage if they are not able to stop the seizures soon. But again, God said, "No - I have more plans for you."

When I was recovering, I did not yet understand why I had gotten sick again. I was on my way to going to graduate school for medical social work - but getting sick again put me on a detour from my plan. But God's detours are always better than the plans we make for ourselves. Jesus said in John13:7, "You do not realize now what I am doing, but later you will understand."

After my last flare-up, I started this blog, and an online support group on Facebook for people who live with an illness. And I have been able to reach out to many people around the world, thanks to the Internet.

It may be hard to think about, but we all know that we don't know when our last moment on earth will be. That is why every moment in the present is important. This is why my husband and I never let the sun go down on our anger. Every time we say goodbye, we do it with a kiss and an "I love you" - even if we are just saying goodbye on the phone.

Maybe you think that you are not leaving behind much of a legacy…that you haven't done anything significant in your life. But remember that even a small rock dropped in a pond causes a ripple effect, and the ripple goes on and on and we cannot see how far it goes. That is like how it is with small acts of kindness. Maybe you are like the teacher in this song, and you shared some bits of wisdom with others - who took it with them and helped them make important choices in their lives. Maybe you are like the farmer and you worked hard preparing something for a future generation. Maybe you are like the preacher, and his gift of a Bible helped a lost soul find faith. In this song, the preacher died in the accident - and never got to see what happened when he gave his Bible away to the hooker. But as you see in the song, this one small action caused a ripple effect that led to the woman giving birth to a son, and she read to him from this Bible, and the son became a preacher who shared the Good News.

So don't underestimate the significance of the small acts of kindness you do. Shannon L. Alder said, “Carve your name on hearts, not tombstones. A legacy is etched into the minds of others and the stories they share about you.” 

Although I may not see how far the ripple effect will go, I will continue to live life giving hope to others. So if I unexpectedly get sick again, and God says that this time I will meet Him, I would have been proud of the life I left behind. Because like Emily Dickinson said, "If I can stop one heart from breaking, I shall not live in vain."

Getting Back Up Again

Ever wonder what toddlers think in their head while they are learning to walk? Toddlers usually learn to walk by the time they are 1 year old, but at that time they are not yet speaking full coherent sentences.

Toddlers usually learn to stand on their own first, then take a few small steps - all to the wonder and amazement of the parents - and then fall down. The toddler then returns to crawling again for a while before beginning to walk again.

But after each attempt at walking and at each fall, the parent is still very much encouraging - even coaxing the toddler to stand up and try again.

When the toddler finally is able to maintain balance and start walking independently, it's a joyous moment for the parents since this is a significant developmental accomplishment. After a while and much encouragement, the toddler is finally able to walk on his or her own, even if doing so unsteadily.

When I was 17, I was relearning to walk again. After being diagnosed with central nervous system vasculitis, I had ataxia as a symptom. Ataxia is a neurological sign or symptom that means the lack of coordination or muscle movements. I remember the physical therapist coming to visit me regularly when I was still laying in the hospital bed. The first step was to be able to sit up on my own. I remember the first time I sat up in bed and feeling dizzy and unsteady, after I was laying down for so long. 

The physical therapist came back every single day, to help me try again. He pushed me to do more everyday - more than I thought I could handle. He trusted in my progress more than I trusted in myself, and helped me gain confidence in my abilities. When I was finally able to stand on my own, it was a great feeling. I didn't realize how much I valued the use of my legs until I finally managed to put one foot in front of the other, and walked my first couple of steps.

In life, we also have many attempts and many falls. Sometimes we try things out and they don't work. Sometimes something happens that deters us from the goal we originally desired. Sometimes falling is not our fault, and life gives us something that we trip over along the journey.

TobyMac, in his song, "Get back up," sings:

We lose our way,

We get back up again

Never too late to get back up again,

One day, you gonna shine again,

You may be knocked down but not out forever,

I've had my own falls recently. Last spring in 2011, life was looking like a beautiful adventure. I had just gotten married and my husband and I were leaving for our honeymoon in Europe. Afterward, we were going to move to the other side of the country where I was accepted at the graduate program for social work at the University of Toronto.

But at the end of our honeymoon, I got sick when my illness flared up again. This changed our decision about moving across the country…we thought it wasn't a good idea for me to start a graduate program right after my illness had resurfaced after 6 years. My husband and I then moved near Seattle because of his job, and I was excited to begin a career in the city. But then my illness flared up again - with worse symptoms - and it looked like I would not be living the life I had imagined.

Currently, I am just staying at home. There were  times when I have felt like I was being useless and doing nothing that is meaningful to the world. I may have been close to dying but I didn't think I was close to leaving behind any legacy. This is probably because I know my abilities and I have had the educational training to do much more than just cooking and cleaning in the house.

Charles Swindoll said, "Life is 10% what happens to you and 90% how you react to it." It took me some time to accept this, but living with an invisible illness will have lots of stumbling blocks and falls. And like a toddler, I will have to get up after each fall and try walking those few steps again.

When we fall in life, we also have a wonderful Parent who is coaxing us and encouraging us to get back up on our feet. God is the Father who is there every time we fall, and offers His hand to help us get back up on our feet and try again. He is much better than a physical therapist, because He knows the plans He has for us (Jeremiah 29:11). And after each time we fall, we only need to hold his hand so we can stay in His plan.

I am not just speaking literally about getting back up on our feet. Look at Christopher Reevs - the man who played Superman in the original movies. After an equestrian accident, he became a quadriplegic. But he was able to "get back up again" with his spirit of hope through his struggles, and continued to be an inspiration for many. You don't need to be 100% physically capable in order to let a little light shine in this world. A heart of hope in the midst of trials can bring encouragement…and if you encourage even just one person…that is enough, because even a whole room can be lit up as one candle passes its flame to another.

A Bridge Over Troubled Water

Henri Nouwen said that "authentic messengers" are "those who are able to put the full range of their life-experiences - their experiences in prayer, in conversation, and in their lonely hours - at the disposal of those who ask them… (It) means offering your own life-experience to your fellow travelers, and as Paul Simon sings, to lay yourself down like a bridge over troubled water" (Nouwen, Creative Ministry).

Henri Nouwen is one of my favourite authors - I discovered him when we read his book The Wounded Healer for my human services class. Through his book, we learned to be helpers who take our wounds and allow them to be a source of healing for those who are wounded:  "Nobody escapes being wounded. We all are wounded people, whether physically, emotionally, mentally, or spiritually. The main question is not "How can we hide our wounds?" so we don't have to be embarrassed, but "How can we put our woundedness in the service of others?" When our wounds cease to be a source of shame, and become a source of healing, we have become wounded healers. Jesus is God's wounded healer: through his wounds we are healed. Jesus' suffering and death brought joy and life. His humiliation brought glory; his rejection brought a community of love. As followers of Jesus we can also allow our wounds to bring healing to others" (Nouwen, The Wounded Healer).

Troubled waters present uncertainty, doubt, fear, anxiety and the unknown. Sometimes when a friend needs us, we can be a bridge for them because we also have wounds and therefore can sympathize and understand what they are going through. We can be a bridge from a heavy heart to a lighthearted smile, from doubt to hope, from anxiety to peace.

When people who are afraid of heights are walking over a bridge across troubled water, they are afraid to look down. If they look down they see water beneath them and the thought of falling off crosses their mind and distracts them from their goal of reaching the other side. When you are with a friend who needs help, he or she may dwell on the problems that cannot be solved and fear might prevent that person from moving forward. As wounded healers, we understand and remember when we were once anxious and afraid of the unknown, and feared crossing the bridge over troubled water to the other side. Sometimes the best kind of friend you can be is to share in the wounds of others, and stay with them during their hour of grief or loneliness. Sometimes the best gift to give is not advice, solution, or a cure, but a hand to hold while crossing the bridge.

Racing with God

I am a Christian. I believe that God created the world and humankind, and when humankind broke their promise with God, God sent His Son Jesus to suffer the punishment so that all can live.


John 3:16 - the Bible verse that separates Christianity from other religions, from other statements of faith, from atheism: "For For God so loved the world that he gave His one and only Son, that whoever believes in him shall not perish but have eternal life."

The Cross has become a powerful symbol for many people. It reminds us of the pain and suffering that Jesus went through so that one day, we can go to a place where there is no pain and suffering.

And for people currently experiencing pain and suffering, they can look to the cross and find comfort and hope.

Some people may say, "Oh...well you're sick...you are just using Christianity as a prop to help you feel better."

No, that is not true - Christianity is not a prop. It is not a teddy bear that you pull out of the closet to comfort you when life is sad or scary." Christianity is a choice...it's a choice to believe in Someone you cannot see out of faith, and to believe in His words, and that they ring true.

Christianity is a lifestyle...it means that through our words and actions, people should be able to distinguish us from others because we choose to love others as God loves them. We think, "What would Jesus do?" rather than, "How can I take advantage of the world?"

Yes, Christianity does bring comfort to those who are sick...do you know why? Because God promises to do so. He told us, "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" (Isaiah 40:31).

I would love to be able to run all day and not grow weary....I would love to be able to be on my feet all day and not get faint...but that is not exactly what Isaiah is talking about here. He tells us that God gives us strength when we seek Him and rely on Him, instead of our own strength. The Hebrew word for "weary" found in Isaiah 40:30, means “exhaustion because of the hardness of life” (Motyer). God promises that we can endure the hardness of life if we hope in Him. So that when we finish the race, we cross the finish line victoriously instead of exhausted.

I am on chemotherapy...this is my fifth month in a row now...chemotherapy depletes the immune system. Although it is different for everyone, my side effects have been appetite loss, general unwell feeling, some nausea, stomach discomfort or pain, weakness, and tiredness.

In spite of chemotherapy and because of my hope in God - I am fighting the good fight, running well on this race, and keeping the faith (2 Timothy 4:7).


What do you put your hope in? You can put your hope in doctors, who say they are trying to do everything they can to help you. You can put your hope in friends, who sometimes don't have enough time for you. Or you can put hope in family, who sometimes disappoint you.

God promises to never let our hope down. Perhaps we don't understand why we are going through certain trials, and we wonder, "Why doesn't God answer our prayers?"

If God is not answering your prayers in the exact way you want Him to, it is because He has a better idea on how to handle your prayer request - for reasons you do not understand right now.

In January of 2011, I prayed to God that I would be accepted to the MSW program for social work in graduate school. I got my acceptance letter, and I thought my prayers were answered. But God had other plans...I got sick again in May, which kept me from moving to attend graduate school. 

I prayed to God that my illness would not return again...that I could be done with it. But in September, I had a severe flare-up that almost caused me permanent brain damage.

But instead of guaranteeing that I would never be sick again, God said, "I have a better plan for you. You will be sick again...and you will have a second round of chemotherapy that will remind you of the days when you were exhausted and heartbroken. And from this third encounter with your illness, you will seek Me and become stronger. For my power is made perfect in weakness. And with your weakness, you will help other people become stronger in theirs."

If it wasn't for my last flare up, I probably would not have started this blog.

What else separates Christians from others? We are happy in our suffering! Although I do have days where I feel down after bad test results from the doctors, deep down, I have joy in my heart. I could spend my days complaining about my symptoms and mourning the loss of a normal life, but because I know Jesus, and because I know that there is a purpose for everything, I choose to always find joy in my circumstances.

"More than that, we rejoice in our sufferings, knowing that suffering produces endurance" (Romans 5:3).

And when you are tired and weary, and it seems like this world has nothing good left to offer you, remember also this: "Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him" (James 1:12).






So why am I a Christian? I am a Christian because I choose to love a God who loves me despite everything I have done. In return for loving Him, He has promised eternity in Paradise. And if you have trouble believing that Jesus existed...read "Mere Christianity" by C.S. Lewis. It is very simple to read, and explains Christianity in simple terms. Jesus did exist...there is proof outside of the Bible for that. Based on his claims, you can either believe that He was Lord, a lunatic, or liar.

And based on what you believe...imagine that today is your last day on earth. Do you know where you are going afterward? Does your worldview answer important questions such as, "Why am I here on earth? What is the purpose of life?" If you are content with your worldview and your belief system, then let that be so - but don't disregard Christianity. For out of all the belief systems in the world, there can only be one Truth. And if you think you know the Truth...then hope that you are right.

And to all Christians, no matter what your circumstances, no matter where you are in the race of life, and whether you are stumbling, walking, or running, remember:

"Rejoice in hope, be patient in tribulation, be constant in prayer." Romans 12:12

Tears and Blessings

Hi everyone...I've been crying a lot lately...don't get too worried...cytoxan makes me highly emotional...so when I feel sad it gets heightened and I cry even when I don't want to or need to...I cried at a Glee episode when they were feeding homeless children, so that's just an example of how silly my tears sometimes are.

But we all need someone to wipe away the tears when they are there. I am grateful to have my husband - he's been so supportive and understanding and strong through everything. And I am grateful to God who holds me in the palm of His hand when I can't hold myself up.

In my one of my other blogs, I mentioned that I was currently on a seizure medication because I was allergic to the last one. Well, it turns out I was allergic to this one too…it gave me a systemic allergic reaction which included another body rash and an on-and-off fever that lasted for three days.

Everyday I have prayed to God for healing…for a cure…to finally let my physical body move on from my last flare ups with central nervous system vasculitis. But when I saw my doctors recently, it didn't really encourage me to think that I was well on my way to remission.

My rheumatologist told me that I probably have the lowest grade form of lupus…another autoimmune disease. He asked me if I knew this because he read through my entire medical record (God bless the doctors who seek to actually know your medical history!) and found that my kidney biopsy from when I was 17 indicated that I may have lupus with primary central nervous system involvement. He said not to worry…since when I am treated for CNS vasculitis, it also treats the lupus…and that I am still being treated as if I was a primary CNS vasculitis patient anyway, since the main problem lies in my bran and not my kidney.

My neurologist told me that my EEG showed that I was having epileptal discharge - which indicates that I am still at risk for having seizures. Because I am now allergic to different classes of seizure medications, my neurologist and I are operating on the theory that as long as my vasculitis is being managed, I do not need seizure medications since my seizures are caused by my vasculitis - even though this goes against what the textbook says about epileptal discharges.

So I didn't really walk away from my medical appointments with a hopeful heart…I was thinking about how much longer I would need to be on chemotherapy, and what the possibility is for me going into status epilepticus again.

For those of you who don't know, status epilepticus is when your brain is in a state of constant subclinical nonconvulsive seizures. You would not know you are in status epilepticus unless you are hooked to an EEG machine that monitors and records your brain activity. Status epilepticus is even more dangerous than regular convulsive seizures because it can cause permanent brain damage if proper medical action is not taken right away.

But out of my illness, God has brought good. If you read my first post, you can read about how my life changed for the better after I was diagnosed with central nervous system vasculitis at 17.

My illness flared up again after 6 years in May 2011 with optic neuritis - it prevented me from moving to Toronto to attend graduate school. But because we didn't move, my husband was able to find a great job to support us. Optic neuritis was a trial that was a blessing in disguise.

 In September, my illness flared up again…and during that time of sadness and questioning that followed my discharge from the hospital, I created this blog and created the support group HOPE so I can bring together others who need hope in their lives when they are weak or weary.

If you read through the Bible, you will find that God can bring so much blessings out of your trials..

Look at the story of Joseph..he was sold into slavery so that he can save Egypt and other people from a terrible famine.

Job lost everything…he lost his possessions, his family passed away, and he was inflicted with a severe illness. But it was during his time of trial that his faith grew stronger in God and became a testimony to those who scoffed at God during the bad times in their life.

 And look at Paul, out of his suffering, he has advanced the message of God. He said:  "Now I want you to know, brothers and sisters, that what has happened to me has actually served to advance the gospel. As a result, it has become clear throughout the whole palace guard and to everyone else that I am in chains for Christ.   And because of my chains, most of the brothers and sisters have become confident in the Lord and dare all the more to proclaim the gospel without fear."

What chains do you have that you can use to serve God and others? My chains are called central nervous system vasculitis…it chains me to the wall of medical appointments, physical limitations, chemotherapy, medical expenses…but through my story and through my faith, I hope that I can bring joy and comfort to those.

"That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong" (2 Corinthians 2:10).

If you are going through difficult times, reflect on how you can bring something positive out of it. The stories that we have lived shape our character…and everyone has a story where hearts have been broken or tears have been shed. When you share what you have learned from your own story to others, they can be encouraged and blessed by your own story too. If you would like to share your story, feel free to message me or post your story below.

Laura Story is a wonderful Christian singer who wrote an amazing song based on her own trials. Her husband suffered from brain tumors. This is from her song:

'Cause what if Your blessings come through raindrops

What if Your healing comes through tears

And what if a thousand sleepless nights

Are what it takes to know You’re near

What if my greatest disappointments

Or the aching of this life

Is the revealing of a greater thirst this world can’t satisfy

And what if trials of this life

The rain, the storms, the hardest nights

Are Your mercies in disguise

And when God is silent during your trials, remember that God sometimes allows us to suffer because he is strengthening us during our weaknesses for a greater purpose. Think about the most significant unanswered prayer  in history. Jesus prayed, "O My Father, if it is possible, let this cup pass from Me" (Matt. 26:39). This prayer was not answered and several hours later, Jesus was nailed to the cross. It was because God brought forth the greatest blessing from a great trial…He had a greater purpose for His Son… For God so loved the world that He sent His only begotten Son - to die on the cross - so that whoever believes in him shall not perish but have eternal life (John 3:16).


Winston Churchill said, "if you are going through hell, keep going."
I say, "If you're going through trials..emerge victoriously with all the blessings that you can reap from it."

God has a purpose for everything. Blessings can come from trials…and when you share your story of trials with others, you share your blessings too.

Listening for "The Voice of Truth" - based on "Voice of Truth" by Casting Crowns

When I was young, I used to play with my invisible friends. Using my imagination, I crafted characters with complex background stories to join me during my playtime. I invited my actual real friends to join me in my imagination games, and we were content as children, personally deciding and controlling what our invisible friends said or did. We spoke the voices for the characters that we created from our imaginations.

While growing up, I stopped speaking for my invisible friends, and began speaking more for myself. After a while, I found that not everyone wanted to listen to what I had to say, and some thought I didn't have anything important to say anyway. When I got sick at seventeen years old with a rare neurological disease that would stay with me for the rest of my life, I began to lose my own voice and started to depend on the voices of others.

There are many voices in our lives. Some are good, and some are bad. Some voices help us make our own voice stronger, while other voices stifle us and prevent us from growing and developing our character.

When I was 17, after having to life direction and take another look at life because of what my illness had brought me, I began to listen to the voices that could guide me.

But some voices just weren't helpful. There were voices of doctors who told me that I shouldn't go back to school yet because I wasn't as smart as I used to be, and that I would graduate below the class average.  There were voices who said that I should never leave my hometown because I would not be able to take care of myself independently with this new illness that I will have for the rest of my life.

And for a while I listened to those voices…until the Voice of Truth told me, "No…this is not what I have planned for you." I knew that God had made me with special gifts to use for His purposes, and that His plans for me would not be able to come to pass if all I did was sit at home and wait, listening to voices that spoke out of fear and doubt.

I refused to believe that God would give me the talent to excel academically and then take it all away…and so I went back to school to finish my senior year of high school - against the advice of most teachers and doctors - and I maintained my health, and graduated with honours and academic awards. God's Voice was the "voice" that spoke truth during this time.

I love this song, "The Voice of Truth" by Casting  Crowns - because it speaks to us about the struggles we have in life, the discouragement that people sometimes give, and the reminders of our mistakes in the past.

There will always be voices beginning with words such as "you can't…" or "you're not good enough" or "you will never…"

Vincent Van Gogh said, "If you hear a voice within you say 'you cannot paint,' then by all means paint, and that voice will be silenced." Dare to defy the voices around you that tell you that you aren't good enough, or that you will never measure up.

The only Voice we ever need to listen to is the "Voice of Truth." God said, "But whoever listens to me will dwell safely, and will be secure, without fear of evil" (Proverbs 1:33). Why listen to voices who make us afraid or make us doubt ourselves - when all we need to do is listen to God's voice for safety, security and courage?

How can we listen for God's voice? Well for starters, He has given us the lovely gift of the Bible where we can hear His words anytime we like. The more time we spend in prayer and listen for God's voice, the more receptive we can be to the messages He has for us. Prayer should be a two-way conversation…when you pray, don't forget to listen for the Voice on the other side of the conversation.

God's voice can also be echoed by others around us who give us verbal affirmation on things that are true in life and bring glory to God. For example, if you have a special talent that God would like you to use more often to help others, He may use somebody to speak with you to encourage you to foster that talent for God.

God's Voice is the one that decides all things. When a giant is telling you, "you'll never win" or reminds you of all the times you've tried before and failed - remember that God's voice gives strength, and just like David - you can knock down that giant in your life with one single stone.

I've had many giants in my life. The scariest giant is called "Central Nervous System Vasculitis" and it tells me that I will always be burdened by this disease, I will never have a cure, and I won't be able to live the life I desire because I am constricted by its limitations. It reminds me every day that it can attack me anytime it wants to or damage my brain permanently.

I could listen to the voices telling me that this giant is too big for me. They tell me that there are smaller giants I can defeat, but this giant is too much and I will never win. The voices tell me I should give up before I lose myself in trying to take down the giant.

David pulled five smooth stones out of the water to prepare for his fight with the Philistine giant. The giant was huge, had more war experiences, and carried weapons far more advanced than a simple sling shot and a stone.

David said to the Philistine, “...This very day I will give the carcasses of the Philistine army to the birds and the wild animals, and the whole world will know that there is a God in Israel. 47 All those gathered here will know that it is not by sword or spear that the LORD saves; for the battle is the LORD’s, and he will give all of you into our hands" )1 Samuel 17: 46-47).

Despite all the voices telling him that he couldn't win, David took down the giant - with God's help - in one single blow, so that everyone can know that God is the One True God.

I will take down my giant - because I believe in the Voice of Truth. From talking to other people who also have my illness, I have noticed how blessed I am not to have any chronic symptoms with my disease. My disease has flared up three times, but it has never bothered me on a daily basis. My husband told me that when we were at the hospital for my last flare up, the doctors wanted to retest me because they thought it was strange that I had not had any symptoms for six years. They thought I might have been misdiagnosed.

But I wasn't misdiagnosed. Instead, I believe that God is with me - taking down my giant. His Voice of Truth comforts me and tells me that I do not need to be a slave to my disease. 1 John 5:4 says: "For everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith."

And if my giant tries to take me down again, I will be calling on God to fight along side me, because "If God be for us, who can be against us?" (Romans 8:31).

Out of all the voices calling out to you today, I invite you to choose to listen to the Voice of Truth. He can help you take down your giants.

Let it Be - Based on the Original Song by the Beatles

For most of us, when we see something broken, we have an urge to fix it. Sometimes we even have a need to fix it.  If your fridge breaks, you fix it. If your computer breaks, it seems like whole your world will fall apart until you get it fixed. If you break a bone, you go to the doctor to fix it.

When I find myself in times of trouble, Mother Mary comes to me

Speaking words of wisdom, let it be

There are many things that just can't be fixed. And there are things that can't be fixed right away, and we have to wait for circumstances outside our control to fix them. And it's during these times of trouble, that our only response is to let things be.

When Paul McCartney wrote this song, people weren't sure if he was talking about the Virgin Mary, or the angel of his mother, who was also named Mary. I am not a Catholic so I don't put a lot of emphasis on Mother Mary or a guardian angel, but I do believe that during these specific times of trouble, God does whisper words of wisdom to us. Words to encourage us and give us hope. Words to give us strength to continue.

Of course I don't mean that you should stop and literally listen to words of wisdom being whispered in your ear, but we can hear God's words through other ways in our lives. Sometimes Gods uses people to send us His message. Sometimes God will bring up a thought in your mind or remind you of a special Bible verse you had once memorized a long time ago.

Last autumn, I was feeling tired and useless when all the medications I was currently on were weighing me down. A friend - who did not even know exactly what I was feeling - posted this Bible verse on Facebook. When I came across it, it definitely lifted my spirits. Think upon this verse as your words of wisdom during your times of trouble:

Isaiah 41:10 "So do not fear, for I am with you;  do not be dismayed, for I am your God. I will strengthen you and help you;   I will uphold you with my righteous right hand. "

"And in my hour of darkness she is standing right in front of me

Speaking words of wisdom, let it be."

Darkness is what happens when there is no light. In life, the hour of darkness can happen at different times. For me, the light in my life includes my family, my friends, good health and other things I value in my life. When something happens to my light, that's when my hour of darkness appears. When something you value is at risk, your hour of darkness can appear.

I've had many hours of darkness in my life. My most recent one was just a while ago when I developed a severe allergic reaction for the my current seizure medication. I have already developed allergic reactions to all of the last three seizure medications I had been on, and just when I thought I was close to the finish line and on my way to remission - this new allergic reaction casted a shadow on me.

My allergic reaction caused a bad rash to spread all over my body, and swelling in my face. Last time, the swelling was so bad on my face that it got the point where I almost couldn't open my eyes. I am glad my new doctors caught this allergic reaction early to prevent anything worse from happening, but still, it was kind of a downer to go from being energetic and active one week, and then spending the next week sleeping most of the day on the couch, and going back and forth from a fever.

There's nothing I can do about this allergic reaction. All I can do is let it be and wait it out. I did stop taking the medication so my allergic reactions should stop soon, and my skin will clear soon from my anti-allergy medications.  But until then, I have to let things be. But at least I know that even during these times of trial in my life when I can't see what the future holds, there is always Someone who is Unseen who is there for me.

God has promised us His Holy Spirit, and when we don't know what words to say to God during our hour of darkness, the Holy Spirit does. Romans 8:26 says: "…the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express."

"There will be an answer, let it be."

To many troubles in life, we may not know the answers to "why" and "how", and maybe the answer will take longer than we expect. All we can do during this time is to let it be. One of the sayings that stuck with me that one pastor said in church was, "Let go and let God."

"And when the night is cloudy there is still a light that shines on me

Shine until tomorrow, let it be."

Just because we're experiencing times of trouble doesn't mean it should affect everything in our life. When I feel troubled, I know that I can count on my husband to lift me up. And I know that when I'm alone and feeling like I want to fall apart, I know that God's light always shines on me and that He comforts me in the palm of His hand.

Think of the sources of light in your life. What light shines on you when your night is cloudy?

There are many things in my life that I wish I had control over - but I don't. When you can't fix it, let it be, let go, and let God.

It's just temporary...based on "Temporary Home" by Carrie Underwood

I love this song by Carrie Underwood. It reminds us that our trials our temporary, and in the end, our life on earth is just our "temporary home."

Today, I was brushing my hair, and it pulled out more hair than usual. I guess it looked like a lot because my hair is long and black. Losing my hair on a daily basis is still something that bothers me about being on chemotherapy. I know that chemotherapy is helping me, and that soon I will be able to get off it, but everytime I see my hair fall out, or I look on the bathroom floor and see strands of my hair scattered everywhere, it reminds me again that I am not fully healed, no matter how it may seem on the outside.

People tell me I should feel lucky - most people on chemotherapy do not have as much hair as I do. And I guess I do feel lucky. During my first bout of chemotherapy when I was 17, I was in the chemotherapy ward at the children's hospital. I always had thick hair, so I suppose when I lost some during chemotherapy, not much people noticed a difference.

I felt so out of place there. In that ward, most of the patients were children much younger than me, and bald, probably because they were cancer patients and have faced chemotherapy so many times already in their lives. It definitely made me appreciate my own illness - because even though both cancer and CNS vasculitis are incurable diseases - at least CNS vasculitis allowed me to live as much of a normal life as I could. I remember being asked to bake cookies with some of the children and seeing their spirit. Even though they were thin and weak from their treatment, their smiles were big and their spirits were strong.

I talked to my rheumatologist lately, and he said that I will soon stop chemotherapy after I finish tapering off steroids, and he encouraged my desire to go back to work or pursue graduate studies. He said that having such an interest helps people cope with their illnesses, because when people with illnesses do not have something to motivate them in life, they tend to fade away.

I agree. I think that some people get so caught up in their burdens that their life starts to revolve around their burdens. This is why it's important to have a good support system to help you come out of your shell, face your problem, and climb that mountain.

My burden is my CNS vasculitis, and even though I look well on the outside, and I am living as full of a life as possible, every time I brush my hair and my hair falls out - it reminds me that I have an illness without a cure.

But the Bible tells us in 2 Corinthians 4:16:  "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."

Even though my hair is falling out and I have an immune system that sometimes decides to attack my brain, it will have no effect on my spirit. I refuse to let my illness and my physical body dictate how my spirit acts. I will continue to be cheerful even if one day I have to buy a wig. I will continue to be hopeful for a cure for my disease even when many others have given up that it will ever happen. I will continue to strive to be the best that I can be, even though there will always be a risk that I might have a stroke, a seizure, or fall into a coma again.

Right now, I know that my chemotherapy is temporary. Soon I will switch to a less toxic medication to manage my illness. Chemotherapy is, like the song says, "…just a stop, on the way to where I'm going." I know this year when I am off chemotherapy, I will be applying for work, and hopefully be attending graduate school.

2 Corinthians 4:17 says: "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."

In my eyes - even though I will have this illness for the rest of my life until there is a cure - my illness is part of my "light and momentary troubles" compared to what Christians will experience in eternity. And if my troubles can achieve for me an eternal glory that outweighs everything I have gone through in life, well then I think that is a pretty good deal that God has given us.   

2 Corinthians 4:18 says: "So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal."

God is unseen and eternal - when we fix our eyes on Him, and have faith, He promises to carry us through the times of trouble in our lives. 

For Christians facing a burden, remember that it is just temporary compared to what God has in store for us in eternity. Have hope that this trouble shall pass, and that you will come out of it stronger than you were before. Isaiah 40:31 tells us that "...those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

If I didn't have God in my life, I don't know how my life would have turned out because of the troubles in my life. I may have started to hang out with the wrong crowd in high school because I was so angry at the world. I may have secluded myself after my illness and shunned the world, because I couldn't see how there could possibly be anything else better left for me, when I felt that I was cheated so much time out of my life, because of my illness.

If you don't have God in your life, know that He truly does make a difference. One of my favourite lines from my favourite musical, Les Miserables, is a song by the main character, Jean Valjean. In this song, he is conflicted about telling the truth about his identity, even though it will condemn him in jail, but it will save the life of an innocent man.  He refers to God in this line of the song: "He gave me hope when hope was gone. He gave me strength to journey on."

If you know the story of Les Miserables, you would know that Jean Valjean had quite the life. He struggled in jail as a slave for nineteen years, because he stole a loaf of bread to feed his starving family. When he broke his parole, he was angry at the world and committing thievery, but this time, for the wrong reasons. It was when a bishop gave him such an extraordinary act of kindness that Jean Valjean turned to God, and saw hope in his future. He then became successful, and eventually became the mayor of a city.

If you ever faced any trouble that you thought was unfair, you can relate to Jean Valjean, and to many others. And if you are facing trouble now, have hope, because it is just temporary. There is a time for everything, and just as there is time for troubles to start, there is also a time for those to end. We may not know when that time will be, but we can have hope in waiting, and keep our spirits strong while we endure these troubles.

I know that someday my hair will stop falling out, and that the fatigue I feel now is just temporary. I know that my overall illness is temporary. And while I am facing these temporary troubles, I don't have to be afraid of what might happen - because that which is temporary will not define me - I will focus on my goals ahead, the unseen, and the eternal.

I encourage you all to do the same. :)

Life Resolutions - based on "Live like you were dying" - by Tim McGraw

A friend on Facebook told me about what Christmas was like in Chile, where she's from. She told me about a tradition that they had where people would give gifts to Baby Jesus for His birthday, and that this gift to Him would be an area in their life that they would like to improve.

I really liked this idea, and I told my husband that even though we are not from Chile, it is a tradition I would like to incorporate in our family when we start having children. Although this is what people do in Chile, people in North America have a certain version of this during the holidays, called "New Year Resolutions."

Often times, New Year resolutions are made and then broken. The most popular New Year resolutions probably include the promise to start a new diet and lose weight. But after a month, people often forget their resolutions or break them.

I really like the idea of giving gifts at Christmas to Baby Jesus about promising to change and improve certain areas in your life, because instead of resolutions for just the New Year, they are more like resolutions for life.

He said

"I was in my early forties

With a lot of life before me

And a moment came that stopped me on a dime

I spent most of the next days

Looking at the x-rays

Talkin' 'bout the options

And talkin' 'bout sweet time"

I asked him

"When it sank in

That this might really be the real end

How's it hit you

When you get that kind of news?

Man, what'd you do?"

Often times, people don't try to make changes or improve areas in their lives until a crisis. In this song, it takes an illness to encourage the man in the song  to initiate many changes in his life, and improve areas that needed improving.

He said

"I went skydiving

I went Rocky Mountain climbing

I went 2.7 seconds on a bull named Fu Man Chu

And I loved deeper

And I spoke sweeter

And I gave forgiveness I'd been denying"

And he said

"Someday I hope you get the chance

To live like you were dying"

He said "I was finally the husband,

"That most the time I wasn’t.

Often times, we take many relationships for granted. We don't realize how important or how special someone's presence is in our lives until they are gone, or until they aren't a part of our lives anymore. A possible "life resolution" is to show gratefulness to everyone in your life, no matter what your relationship to them is. Don't wait to try and improve a relationship until it is failing. 

"And I became a friend a friend would like to have."

Which relationships in your life would you like to improve? Which relationships need forgiveness and reconciliation? Even if you find that you cannot reconcile with that person because it is better for that person not to be a part of your life, forgiveness allows your heart to be lighter and releases a heavy load that it has been carrying, and prevents any strings from being attached to bitterness.

"And all of a sudden goin' fishin’,

"Wasn’t such an imposition,

"And I went three times that year I lost my Dad.

In Canada and the United States, so many of us live life on such a fast track, always looking to rush things. We are rushing in traffic to get to work. We skim almost everything we read, just so we can rush and get to the main message. We rush our tasks so we can have everything done according to the schedule we have set. It is inevitable that because we rush so many things in life, we end up rushing life - and we forget to slow down, and truly enjoy life and appreciate it for what it's worth.

For the person who has been told that life only has a certain amount of time left, who would want to rush life then? Don't wait to be told how much time life has left to "live like you're dying", and enjoy life.

This is a lesson I am still learning every day. I am so used to everything needing to have it's own scheduled time, that I sometimes miss out on the joy of spontaneity. It's something my husband has helped  me with out a lot. He is very laid back while I like schedules…in that way, we kind of both balance each other out. 

"Well, I finally read the Good Book,"

Jesus said that He is the Way, the Truth, and the Life. Even if you are not a Christian, you should still read the "Good Book" at least once, just to check if you are wrong.

"And I took a good long hard look,

"At what I'd do if I could do it all again."

How many of you, at New Year's, look back on the past year and wonder what would you do if you could do it all again? How would you have reacted differently in certain situations? What would you have said differently to people? What choices would you have made instead? Regardless of how your year ended up being, God has a purpose for everything. Even if we strayed off His path, He has a way of turning things around in accordance to His will. He can use anything for His good. Just look in the Bible and read the story of Joseph in the Book of Genesis, Genesis 50:15-21.

"And I loved deeper and I spoke sweeter,"

It takes a stress overload for the stressful person to realize that they need to slow down and take time to relax. And for all of you reading this, I hope that you don't wait for a serious illness to make you stop and reflect on how you can change your life now to live better. For those who do have an illness like me, don't wait until too late to reflect on how to live life fully at every aspect, how to "love deeper" and "speak sweater" and "give forgiveness that you've been denying."

"Like tomorrow was a gift

And you've got eternity

To think about

What you'd do with it.

What could you do with it?

What did I do with it?

What would I do with it?"

Some people are so ill that they don't know how many tomorrows they have, or they have been given a certain number by their doctors. For them, I am sure they spend each day thinking about what they would do with their "tomorrows."  It's not just "tomorrow" that is a gift, every day is a gift. Every day that you are breathing is another day full of opportunities and possibilities. For those who feel like their life is going nowhere, you may be thinking, "What good is my life when I have nothing to look forward to?" Well just think - there is so many good you can do. You can do good for yourself - make sure you stay healthy physically, emotionally and spiritually. For those who experience chronic illness, you may wonder what good can you do when you spend most days laying in bed because you can't get up. Well, doing "good" doesn't have to be just expressed by actions. "Good" can be a kind word to someone else to cheer up their day, or any other "love language" that I explained in my previous post, "Christmas Song #4: Don't Save it All for Christmas Day", such as quality time, words of affirmation, gifts, acts of service and a physical touch such as a hug.

And he said: "Some day, I hope you get the chance,

"To live like you were dying."

I don't have any New Year resolutions this year. Honestly, there is no new resolution that I haven't already resolved to do. Unfortunately, I resolved to do these resolutions later rather than earlier.

When I first got sick with primary CNS vasculitis at 17 years old (if you do not know this story, please read my first post), I had resolved to live life the best way I can. I was close to death so many times when I was laying in that coma for thirty-two days. When I woke up, I began to realize how much of a gift life is.

My illness is an "invisible illness" - that means that it's there, it will always be there, even when I do not look sick. Because there is currently no cure for my orphan rare illness, I will live the rest of my life hoping not to have another flare up - because at a bad flare up, life can be taken away from me.

It was almost taken away from me a second time this year in September 2011, when I unexpectedly developed seizures as new symptoms of my illness. I could have died, or I could have lost my mind. I signed a Power of Attorney contract at the hospital that I don't remember signing because my brain lost memories surrounding that one week when I was having about three seizures per  minute. The doctors told my husband that it was possible I would have permanent brain damage, because they could not figure out how to stop my seizures at that time. 

When I recovered this time - after the doctors figured out the right treatment for me - I waited to see what God had planned for me. I certainly did not plan for this flare-up. I was going to volunteer, find work, and complete  other projects I had planned - these were all delayed. It was while waiting for God to discover His purpose for me that He showed me little by little what it was. I started this blog, my first piece of writing I have ever done in a long time, that was not related to school work.

I used to love writing, but when I was 17, before I had gotten sick, someone wanted to hurt me out of selfish anger and threw out and destroyed all my writings, my stories, my journals, and a novel that I had currently been writing for my sisters. After that, I thought to myself, "Why continue writing when it could disappear all of a sudden, so fast?"

It was only recently, after reading my posts in my HOPE group on Facebook,  that Ginny - a friend that I mentioned in an earlier blog- encouraged me to write things to publish. I didn't know about publishing, but I began to write this blog, to share my own experiences.

I shouldn't have waited this long to start writing again. Just because someone could throw out my writings again to hurt me doesn't mean I should never write again. Just like even though my illness can take my life away if it chose to attack again, it doesn't mean I should stop living. Instead, I  "live like I'm dying" - but not in a way that makes me mourn my illness, but instead, I celebrate  as much as I can of every moment of life I have left. 

And after this second brush with death, I resolved to have a better relationship with God - because believing and going to church are nice things, but how can I call him my Best Friend when I don't spend daily time with Him? I resolved to make sure I do my best to spend time in His Word everyday. Since I am not the type to just pick up the Bible everyday to read it, I subscribed to www.crosswalk.com, where I signed up for regular Bible devotions to be sent to my e-mail, since I read my e-mail everyday. And if I can spend time every day to read my e-mail/Facebook messages, I have time to read a Bible devotion. I encourage you all to do the same.

I also resolved to be a nicer person. I get impatient easily and it comes out in my words. Being nicer also meant withholding judgment, and just like the song says,  "I spoke sweeter, I loved deeper, and I gave forgiveness that I'd been denying."

I forgave that person who destroyed my writings just a couple years ago, when I finally let go of that bitterness that had me trapped for so long, and when I did, I found that I could live easier. My heart was lighter, and it was no longer preoccupied with what was holding it back.

Everyday I do my best to live like I am dying. It is easier to do when you know you have a disease without a cure that can claim your life if it chose to. Until recently, CNS vasculitis was fatal for most people because of the lack of research for this disease, the lack of knowledge to diagnose it, and the lack of medical resources to treat it well. Death often followed after 45 days of diagnosis.

Click here if you would like to learn more about CNS vasculitis. http://www.hopkinsvasculitis.org/types-vasculitis/central-nervous-system-vasculitis/

For all of you, I wish you a happy new year, and I hope that you spend every day this 2012 living life to its fullest, and I hope for good health for all of you, so that you may have the chance to "live like you were dying" without having to shake hands with death, in order to do it.

Numbers 6:24-26: "May the Lord bless you and protect you. May the Lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace."