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Wednesday, July 25, 2012

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

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

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

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

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

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

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

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

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

  5. Rain waters the garden, just like tears water the soul
  6. I used to think that crying was the symbol for weakness. I thought that if I cried - it meant that I was losing…losing an argument, losing a battle, losing at life…I thought crying meant that I was giving in.
    From the last seven years of living with this neurological illness, there have been many moments where tears took center stage. And I know there are still many people today - who often cry themselves to sleep because of pain, regret, or worries. Tears can carry with them a healing power…it may not solve a problem, but it offers relief and often the resolve to continue fighting. Suppression of emotions can lead to depression…if you didn't have tears to express your anger, pain and sorrow - there would be a major physiological and psychological imbalance in your body that would lead to more distressing problems. Tears can purify stress and negativity.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


  1. you are absolutly amazing and i am so honered to know you. thank you for your inspirational words and soul touching story! <3 alicia

  2. since my starting of PCNSV 3 year ago. i have been so angary the world and everyone in it and above it so in fair is always in my head.. i was 48yeas and have had 6 strokes now, but now to slow down and enjoy have a life, i have always worked so hard and getting next nursing quaiftion, now cant spell/type...takes me what?? i love reading your !! bloog!! not sure geep will thank you so much will get my mum to read it number 6 so for her bless mum and dad look after me..thye a lovely god thanks to parents xxx

    1. wanted to put in my name...Ann Barber sending love and hugs to all you family friends too xx couldnt work in to understand me sorry brain cell not working x

    2. Hi Ann Barber, I am so honoured that you enjoy reading my blog and I am glad it brought you some encouragement during your rough time with CNSV. I am sorry to hear you have had 6 strokes already in your last 3 years since diagnosis. I pray that this disease will turn around so that life can really head uphill for you. I can see how frustrating it is to have this illness change everything - such as your career track. My career is also one thing I am uncertain of right now. I was planning on being in human services/social work...but that is usually a job requiring you to be on your feet and serving people, but I am not quite sure if I am ready to be on my feet 40 hours a week again. That is so great you have loving and supportive parents.
      Hugs and blessings from your CNSV sister

  3. Hi Ann barber, thank you for writing such an inspirational piece. Ibwas diagnosed per brain biopsy in march 2012 with central nervous system vasculitis. I am dizzy all of the time and have terrible tinnitus. My doctors have told me that I will have permanent brain damage and I too had a big career. I ran a therapy company for over 20 years and now I can't work because of cognitive and memory stuff needed. I very often sit home and lament why me yet I have not had any strokes or seizures should it could be much worse. I just started driving short distances but am unable to cook and clean because of the dizziness. I have the most wonderful husband who I couldn't imagine life without. I haven't been able to work since February, gained a lot of weight with the prednisone, lost most of my hair with the chemo therapy , caused a tremendous debt with the medical bills so icant imagine why he stays with me but he sure does, so I am reading what you wrote and thanking my lucky stars for what I do have. Thank you thank you thank you

    1. Hi,
      Thank you very much for sharing part of your story with me. I love hearing from my readers.
      How difficult it must have been when you had to stop your life because of this illness - i remember how frustrating it was to find a new sense of normal. I really hope and pray for you that you can be on the road to remission soon. Losing hair and gaining weight is a sad part of the price we have to pay because of medication, but I remember that it is helping us stay alive. When you are better, the hair will come back and the weight can go away if you work at it. I used to be half bald on part of my head because of my brain biopsy, i was very sad about my hair. But with time my hair grew back, and I was able to lose the weight i had gained. It is hard to be patient when we can't see the "final picture" - but we have each other to lean on, have courage and strength. I will also be praying for your medical debt - i know how stressful that can be. i have learned to remember to lean on God - and He will make a way and provide for us.

      I am happy that I brought you hope - please stay hopeful. I believe that God has a purpose for everything - and sometimes we are not sure yet what that purpose is, but He helps nudge us in the right direction.

      Hugs and blessings,

  4. Dear Chelsey-Ann,

    You touched my heart very deeply with your blog! Life is full of miracles and you are one of them, a truly gift from God. When reading your blog I got tears floating in my eyes and I wanted to give you a hug! You have found the deeper meaning of life and expressed unconditional love. God has given us everything for a reason and life itself is one of the biggest gift. If only we all could be able to really value it in our everyday lives, we wouldn't have so many problems in our world. You have found God's love in your heart, and it will always give you everything you need. I will be part of your struggle with your illness and send you all my prayers and all the love from my heart. You are not alone; we are all together and you are blessed and loved.

    Tristan Bakke

    1. Hi Tristan,
      Thank you so much for your kind and encouraging message. I am so happy that my blog has reached you and encouraged you. I love what you said about how when we find God's love in our heart, it will always give us everything we need. It's so true! It was a hard lesson to learn over the years but I am happy to have learned how to "be thankful in all circumstances" (1 Thess 5:18).

      Thank you also for your prayers. I see that you have joined our HOPE group and I look forward to getting to know you better there!


      James 1:2-4 "Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing."


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