Meet the Pied Piper of ukulele students
Adam was a wonderful artist, musician, father and friend. We had a shared experience of living with brain tumour and then the fallout of the new normal of the post op world. It is a struggle for all of us at some level, some of us struggle more than others and experience more numerous or more intense post op deficits.
One of the reasons that I connected so strongly with Adam is that I was once a musician myself. Music is something that was taken from me by my brain tumour. Singing and performing was physically painful and as 'Rockstar' as is sounds, the reality of leaving gigs in an ambulance is not wonderful. The last few gigs that our band played required me to self inject medication to get through a set. The medication had its own horrendous side effects but it was the only thing allowing me to function some days. After a year of performing with my brain bump on board we decided that the pain, medical drama and side effects of medication were too high a price to pay for the music. That and of course the threat of 'sudden death' hanging over my head.
Who is Amanda and where does she fit in this?
Meet Amanda
I fell over Amanda a few years ago when someone shared a link to her TEDTalk The Art of Asking. I have since purchased the book and the Audible book which I have now finished! Amanda's book came with me all over Europe on our trip earlier this year.
I have had many 'oh yeah' moments throughout my journey exploring Amanda's music and writing. It has been quite the adventure and very revealing at some points. Anyway, back to the point...
While I was in Sydney for a conference, I had an amazing, vivid dream about Amanda at a beach in QLD playing beautiful music and singing. There were a pair of little girls there who seemed familiar but I couldn't quite recognise them. The strongest part of the dream, aside from the music, was the strong feeling that these girls needed to be protected. I woke up that morning light hearted and the music was still floating around in my brain and buzzing me at weird moments. I got up, got ready and headed off to find a ferry to take me to the next conference.
While I was in transit I checked Facebook. There were at stack of PM's from my brain buddies around the world. That was weird, what was weirder was they were all asking if Adam was okay. I flipped open my last chat with Adam and sent a message saying 'Are you safe?' I had a call from Adam a week or so earlier where he had called me from a mental health facility and wanted me to document his story as 'anecdotal evidence' for the need to provide brain surgery patients with psychosocial supports. I didn't get a reply so I popped into our support group to see if he had posted anything... questionable or indicating that he was at risk.
I found a post from his wife telling us that Adam had died suddenly. Time stopped, and sped up, and went sideways. I sent messages back to the people who had reached out asking about Adam. I sent a message to his wife. I got off the ferry and tried to locate the conference but was having trouble breathing and couldn't see through the steady flow of tears that were cascading down my face and soaking my shirt. I found the conference, located the bathroom and headed straight there to pull myself together and try to be 'professional'. As I entered the conference I was handed a copy of the Clinical Pathway for the Screening, Assessment and Management of Anxiety and Depression in Adult Cancer Patients. My internal reaction was 'too little too late'. Adam had started an outsider art group the day he died. I had (mistakenly) thought he had turned a corner and was on the way out of the immediacy of the struggle. I was wrong.
I sat through the first half of the conference trying to concentrate on the important information being delivered by these very passionate people who were researching this very specific area. By the lunch break I was still shattered, I couldn't give my full attention to the speakers and really just wanted to scream how unfair it was that the world had not supported my friend. My grief started to transform to anger. I became more determined than ever to make sure that this doesn't happen to anyone else. Before I left I spoke to some of the speakers and told them why I was leaving, filled them in on the research I had been doing and let them know that I plan to be around for a long time to make sure that there is appropriate support for the people who need them.
I feel like Adam sent me the dream to sort of soften the blow a little. He gave me beautiful music performed by one of the most passionate 'uke' musicians I am aware of and let me know that he is watching over his beautiful girls. They are protected and loved by their darling Daddy.
After finishing Amanda's book last night I felt that I really do need to put this down on 'paper'. I have had a number of people suggest I write a book about my experience with brain tumour and life beyond. I am not a writer (as you may have guessed) but I think I will start to put some things down and arrange them somehow. I don't know that it will be a 'book' or even very interesting, but I'll give it a shot. What have I got to lose?
So far that brain bump has taken my music, my vision, my hearing and my voice. Enough is enough. I have a piece of art (I struggle to use that word) which is stewing in my mind and will soon become reality. It doesn't hurt to try.
Be safe, love each other and don't be afraid to ask.
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| Adam, his gorgeous girls and I at GOMA |
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