Jane's Story
A woman after my own heart, as I unraveled the seams of Jane's abounding prose, her genuineness and her assuredness grabbed me and wouldn't let go. I found myself saying "Amen!" in my head (and a few times out loud) as her wisdom and spirituality gratified something deep within aching for confirmation. When I came across Jane on the AVM Survivors site, I could tell she would provide a perspective much needed. But she's exceeded any expectations I may have unconsciously held. I am moved by Jane's ability to shed any vulnerability and tailor a version of her story that is as humble as it is heroic. Go to a quiet place, take a deep breath, and prepare to be taken a little higher...
Hometown: Perth, Australia
When I was younger, I wanted to be: An air stewardess :P
In 10 years, I will have: a family who loves and serves the Lord (God willing).
My life long goal is to: Romans 12:12 sums it up pretty well: “Be joyful in hope, patient in affliction, faithful in prayer.” I think, practically, I want to try to live simply but passionately, and be hospitable with my resources. To keep growing in Christ, serving Him, and learn to be content in the Lord in every season & circumstance of my life.
If I could change one thing about the world, I would: Eradicate violence and loneliness, and promote hope. Give every child a safe and loving home to grow up in that provides for their physical, emotional and spiritual needs... Sorry that’s a lot more than one thing!
My favorite quote/scripture/affirmation statement is: I have so many as they helped me through the AVM journey so much.
- Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
- Psalm 91 Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.” Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.
- Always be kind, for everyone is fighting a hard battle. Plato
- Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength. Charles Spurgeon
- 2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
High flow AVM in the right masseter muscle in my cheek. First sign was swelling of the cheek.
2) How did you eventually come to receive treatment?
It was a long journey seeing various doctors and specialists around Australia and overseas, and getting conflicting advice. I did a lot of research online myself with the support of my parents and friends, asked and learned from the experiences of many other AVM patients on the AVM survivors website and Facebook page. It was a very difficult decision whether to treat, or to wait and monitor, as nothing was black and white with AVMs, and there are so many uncertain factors and risks on both sides of the coin. But eventually after much consideration of the facts and prayer, and under the trusty advice of Dr. Suen who thought I had a good chance of completely eradicating the AVM, I decided to give it a shot at been AVM free.
3) Who are/were your main doctors, where are/were you treated and how has your care been?
Dr Suen in Little Rock, Arkansas U.S. performed a major resection of my AVM in 2014. Words cannot express how thankful I am for him. His professional skills and experience with AVM is outstanding, his patient care and follow up always exceeds expectations. Even though I am now seeing Dr. Wayne Yakes in Denver, Colorado U.S. for ethanol embolisations, Dr. Suen continues to follow me up and review my scans. Dr. Yakes is also without a doubt very skilled at alcohol embolisations for AVMs. I have had 2 very successful treatments by him. I have also seen doctors in China for embolisations prior to seeing Dr. Suen and Dr.Yakes. There was also Dr. Kenneth Thomson from Melbourne, Australia, who was very professional and kind. He helped me a great deal in explaining what an AVM is and provided free advice via email and reviewed my scans.
4) How do you feel your health will progress in the future?
Having had quite a few embolisations and surgery, and sometimes avoidance of activities/exercises that can worsen my AVM symptoms, meant that I don’t have the same physical health and stamina that I used to. But I’m very thankful and positive that it will return to normal eventually. My last embolisation went well, and the report says that I’m possibly at end of treatment! Though I will still have to get another angiogram in November to check for any regrowth, I am trying to maintain a steady mindset that whatever my next scan result will be, it’s in God’s hands. Dance was one of my passions, and I had to stop dancing for awhile because of AVM symptoms and the medical treatments associated with it. But I’m now back into dance and preparing for our end of year concert :)
5) How has having an AVM changed or impacted your life?
It has been a difficult journey with many tears, anxiety, frustrations, disappointments and uncertainties. Much time, energy and money has been swallowed up by the disease itself and related medical scans and treatments, especially the ones requiring me to travel overseas. However, I feel like I’m a much more enriched person because of the AVM. It has changed my perspective on life, faith, everything. I have become more positive and an optimist. I met some really amazingly brave and strong men, women and children who are battling the disease themselves or caring for someone who is. Their experiences, attitudes, advice and help have impacted me in more ways than they will ever know. I now have a unique story to share that may help encourage others. Most importantly, my faith in God has soared. Having an AVM made me question and struggle with my faith in God, as a result my faith has been stretched and solidified. God has shown me so much more of Himself and His character, of myself and my character and purpose, and a deeper understanding of the scriptures. Eg. how God work all things (even the bad things) for the good to make us more like Jesus; why someone so weak like me would have a disease like AVM – so that His power can be made perfect in weakness; how no king is saved by the size of his army and no warrior escapes by his great strength, but it is the Lord who delivers.
6) What has been your biggest challenge in the battle with AVM?
Emotional stress and anxiety over whether the AVM was growing or going to bleed. Loneliness and isolation: friends, family, and work colleagues who mean well but just don’t know how to respond or relate to your illness/situation because it’s such a rare and invisible disease. Also sifting through the conflicting and contradicting advice from different doctors, some whom really didn’t want to know about your condition, and some who can come across insensitive. I was told by a specialist I was going to die on the table if I had ethanol embolisation, and that no doctor would perform surgery on me as it would mutilate my face. I was also told by another specialist that my AVM was only a nuisance to myself because it’s not like it has popped out of my face and is squirting blood everywhere.
7) What do you think a documentary about those surviving AVM can achieve?
I think it would be a valuable source of information, hope and encouragement to patients. It would also raise greater awareness and understanding of the disease in the public as well as the health professional sector. I hope it will encourage medical professionals around the world to be more proactive in AVM research and treatment, so more resources and safer and effective treatment options can be accessible to patients no matter which part of the world they live in.
8) What are your hopes for the future of AVM research?
I hope for a cure and less invasive treatments and number of treatments needed. And also increased resources, education and understanding of AVM amongst medical professionals.
9) What has been the biggest lesson you've learned throughout your journey thus far?
There are so many as mentioned in answers to previous questions. Probably that God really does have a good plan in every season of your life which can be lived with purpose and hope.
10) What is your proudest accomplishment?
Not to live for a cure but simply to live. I’m making the most out of my medical trips to U.S. Instead of dreading them, I try to get excited about them. Every time I go, God works little miracles here and there, places new wonderful inspirational people in my life, and shows me that I can live purposefully and bless others despite what my circumstances look like.
