My wake up call....
A couple of years back you would see me organising my life always few months in advance. I would know where I was going to be at any given moment at least few weeks ahead. Then BANG! I forgot that the Universe may have had plans other than the ones I set for myself. This is how my life began to change. This is when I started to realise that it's not all up to me, that my life can be influenced by someone or something else and vice versa.
Today marks exactly 2 years since I began this new chapter of my life and even though at the time it seemed like the end of the world, right now I know it was all meant to be exactly how it happened.
To cut a long story short…. In December 2015 my sister suffered from a ruptured aneurysm which resulted in a stroke. It was probably the most challenging few weeks of my life. The stroke caused expressive and receptive aphasia. Aphasia can include loss of speech, comprehension, reading and writing skills. Thankfully her reading was not hugely affected which definitely helped with her rehabilitation. From losing 98% of her speech, within 2 months she was back to about 75% after only 6 speech therapy sessions. As you can imagine, it was hard, challenging few weeks. She was so determined, I’ve always considered this her biggest strength. Her determination and persistence, as well as the help of her closest friends and family, helped her regain her ability to speak and understand in an incredibly short period of time. She is a miracle, this is exactly what her doctors called her, even though at the time they were the ones saying that it's unlikely she will regain quite a big chunk of her abilities. You can watch her story here.
A couple of weeks ago I found a letter I wrote to her during my stay in the US while she was at the hospital. The writing has always been my coping mechanism even though not many people know about it. "If only I could swap places with you, I would do it without a shadow of a doubt" part of it read. My sister is the strong one, how was I supposed to cope with all that was thrown at us so quickly I just didn't know. I guess we don't know the sort of strength we have until we have to find it.
Two months after my sister's operation I was faced with issues of my own. After suffering a terrible headache I was admitted to a hospital, where a CT scan picked up a haemorrhage on my brain. At first, taking into consideration family history, doctors thought it was also an aneurysm. After I was transferred over to a specialist neuro hospital the diagnosis changed. It was an AVM. AVM is Arteriovenous malformation and it is an abnormal connection between arteries and veins, bypassing the capillary system meaning that blood was just gushing through in that part and the wall was torn under pressure hence it bled. It was rather large, about 6 cm, so I was very lucky as the large ones bleed for a short period of time and not too much. Yay. Now seriously – what the heck is an AVM? It all sounded like a different language to me. I suffered from a slight vision loss as the bleed was in my visual cortex so I could not read up on it. I think it was a good thing. The evening before the surgery, one of my dearest friends stayed after the visiting hours to offer me some extra support and help me understand my fears and feelings to the deepest part of me possible. I will be forever thankful for that evening. These few hours taught me more about myself than anything else in my life ever had. He always says that he’s just a signpost on my path but had he not been around to guide me and lift me up at that challenging time of my life I really do not know how would I have coped.
"Those who look outside, dream. Those who look inside, awaken."
I didn't talk to a lot of people about it at the time, only a handful knew. A handful that means the world to me and I am certain that they will remain in my life forever. They are the family I chose.
Surgery was long. Eight hours under anaesthesia and constant radiation from the x-ray machine. I swear that it wiped off all of my positive energy reserves and left me deflated for a while. They didn't manage to block all of it, 50% of it still remains to await further treatment. After the operation, I was faced with 5 weeks off. I panicked, but then I realised that what happened was probably my body’s way of telling me “stop & live”. I worked so much; by that time you could consider me a workaholic, my social life for the past few months was mostly non-existent. But then the doctor said that after my surgery I could not fly, use a computer, read, or even exercise as all these tasks would most likely result in a headache. He said that I should allow my body to adjust to the foreign object in my brain which was the glue they used to embolise the AVM. As a newly qualified PT, it was a big hit, but with travel and reading out of the equation it seemed even worse. I had trained myself to look at things in a positive way at all times. I took the 5 weeks and I learnt more about myself than I have in the 29 years of my life. I meditated daily, morning and evening; I observed nature, people and myself, my reactions, my feelings. I was mindful. Not in the Mind Full type of way, I was just mindful of everything. It's as if I saw every single leaf move with a slight gust of wind, the birds flying high up in the sky, the raindrops on my skin. All of it felt as if it was brand new and as if I felt it for the first time ever.
I thought I was on the right track there, I felt good and then…. Easter, friends downstairs, super happy times, I am in the shower. As I started washing my hair all of a sudden chunks of it started falling off. By the end of the week quarter of the hair on my head was gone. I started styling it after the shower but seeing more of it fall hurt me so badly, my heart physically ached. Appearance was always important to me. This is when I learnt yet another lesson. Even though I knew it before, it was just a reminder that it’s not what’s outside that counts, it’s the inside. It’s the compassion and the love that you give out that really matters. I considered just shaving it off, but the rest of my hair was heavy and thick enough to cover the baldness. I wore a hat more often than I didn’t – especially when it was windy. I always had a solution. As a matter of fact, this bald patch became my comfort spot - I would catch myself holding it and rubbing it with my hand every time I was deep in thought. That chapter of my life always reminds me of something that the amazingly talented Maya Angelou once said, “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
By the end of my 5 weeks off, I could have written a full-on essay about myself but by then it barely had any significance: it no longer was ME that I transformed. I was changed, it’s like I woke up from a long dream, which made me unconscious. My eagerness to learn more almost became an obsession to me. I just wanted to learn and figure out how I could potentially heal this world, one person and one day at the time.
It’s been exactly 2 years to the date that I was diagnosed. The journey is still not over; I am living with 50% of the AVM still there. I had to make a decision a few weeks ago whether or not to go ahead with a 2nd surgery which carries a lot of risks which not a lot of people would be willing to take. I decided that the benefits of a successful surgery outweigh the risks, therefore I will go ahead with it and put myself in the hands of amazing surgeons who I trust will be guided by something bigger and greater than all of us. Before I made this decision I fell back into my old self, trying to plan it in advance, saying which month would be most suitable for me or for my plans. One evening, before I made my final decision, I asked for guidance in my meditation. I went to bed just as confused as I was before but when I woke up, the only word that I kept on hearing in my head was "Surrender". I realised that it was the Universe telling me that I fell back into my old routine of continuous planning. I realised that no matter how hard I will try to plan it, it is completely out of my hands. I surrendered. I told my surgeons not to wait for me to tell them what works around my work and social calendars but to go ahead with the dates they have available. It was a big step for me to allow to let go of control but in all honesty, I know it's the right choice. There is still a long journey ahead of me but the one thing that I know now is that no matter what, I will be ok. I will also not let this thing define me. I am not my AVM and I am not my past experiences. I found that a lot of people going through similar situations put themselves in a “protective bubble”, which stops them from doing things they want to do. I am the complete opposite. This experience pushes me to try more and more things that would help me achieve and learn. This AVM made me realise what my true passions are. I know I want to help others reach their ultimate potential but I also know that writing and cooking bring me happiness. I find solace and peace when I lose myself in it. I could sit here and write for hours about things that may make no sense to anyone but it does make me happy. It is what led me to publish my first book "Easy Way to Go Vegan" couple of months ago which is such an amazing achievement for me. I also had few public speaking engagements which allowed me to talk to people about my experience and help others find motivation and determination to go after the things that they really want in life.
I wanted to share my story with you because at some point in our lives we are all faced with challenges and sometimes life-changing experiences. It’s up to us how we deal with them. We can look at everything as a curse or we can look at it as a blessing. Since it happened to me my life has taken on a completely different turn. I am so grateful for everything in my life. My friends may think I am a little crazy, but I say I love them a lot now, I do not like to leave things on a bad note with anyone either, as quite frankly, I do not know whether I will get a chance to see them again because this 'life thing' can get a little crazy. The most important thing is that every morning, without fail, before I even open my eyes I say “thank you” three times. I can’t explain why three, it seems right. I may have read somewhere that if you say something threefold it has a better impact maybe. Not sure- but I am grateful for the pain it has caused and for the blessing it brought my way. I am grateful for the friends and family members that picked me up along the way and helped me stay strong, they make my life very precious.
I see my AVM as my wake up call, don't wait for a major fall down, accident or medical emergency to realise that you are important, start now. Take a day off and spend it with your family, take time to meditate, do the things on your bucket list, grow. Just walk, one step at the time. Lao Tzu said, "A journey of a 1000 miles begins with a single step". You don't have to know what the journey is, you do not have to have it all planned out and by all means, you don't have to act as if everything is ok all the time. Allow yourself to let go and surrender to the greatness that surrounds you.
"We are not human beings having a spiritual experience. We are spiritual beings having a human experience."
Pierre Teilhard de Chardin
This may or may not have some relevance to you, if it helps you in any way I am happy, if it may help someone else, please share it with them. Since it’s been a long journey and to me, it’s almost like a new life, I just wanted to say thank you again to the people who keep me motivated, people who keep on pushing me and people who continue to believe in me even though I sometimes lose faith in myself. You know who you are and I am forever grateful for having you in my life and I truly hope that we can watch each other blossom and grow while we go through this wonderful journey called life.
There is so much more to this story and it was really difficult to squeeze it into a short blog post. One day I will share it in full but in the meantime, if you have any questions or would like to talk, just drop me an email.
If you want to find out more about AVM and available treatments, to donate or read other stories, please visit Butterfly AVM Charity website.
Love and light,