I bought this book for three reasons. The first was to support a friend, I’m fond of supporting friends in all their works, a glance at my Patreon and Ko-fi supports that. The second was because I was intrigued as to how you could write a book when you’re a quadriplegic with a tracheostomy. The third is because I wanted to find out how Miljons-Rostoks manages to make life work for him with his major medical issues.
I first met him on Facebook. He reached out to become friends, I think he was trying to expand his friendship list and noticed I was also studying at Deakin. Reading his words on Facebook were a complete eye opener. While I have medical issues mine pale into insignificance when put next to his. I’m not saying I don’t have a right to complain, everyone has a right to complain, but my complaints should be more muted because Miljons-Rostoks has many more struggles than me. The only way he can breathe is with technology and support people. If his breathing apparatus fails and his 24/7 support personnel don’t get to him and fix it in time then he’s dead. He seems to only have a little bit of movement from the neck up…not the neck down, but the neck up. He is the very definition of medical science being fantastic because without medical science he would have died years ago when the paralysis became worse. Actually, if it weren’t for vaccines I probably would have died before the age of five, but that’s a total digression.
All through the book I never understood exactly how Miljons-Rostoks manages to type. I think they put a strap around his head with a poking thing coming off his forehead. But I can’t visualise that in my head and that causes me conniptions. With that contraption he can pummel out 500 words at a time. It’s much harder for him to type 500 words than it is for me. I’m currently up to 300 odd words and I’ve only been typing a few minutes. It’s much harder to maintain focus when you can only type with the equivalent of one finger, and that only with your head. Not just much harder, but also much slower. And to produce 500 words for him is exhausting.
This is compelling reading. Each chapter is short, but I found it hard to put down after just one chapter. Miljons-Rostoks seems to have found his calling in writing about his life. I’d really like more books, not necessarily about his life, but also about other things he has in mind. I suspect he’d be really good at historical fiction. He’s got a good brain and if he chose to take the time he would research everything I feel it would be a really good book. I’m not trying to push him in any particular direction, but I have asked him about his next book. I haven’t had an answer as yet and don’t expect one. However, I will buy whatever book he produces, even romance, but I won’t read the romance ones. If you’re reading this, Miljons-Rostoks, just remember that last bit.
This book was written during the worst of Covid, during all those lockdowns. Everything was much worse for him. I have some small understand of how this might have felt for him because when the major lockdown was over and we were allowed out I wasn’t, I’d wrecked my back and was confined to bed. But Miljons-Rostoks was already confined to bed because of this virus he’s suffered which has paralysed him. During lockdowns, especially when they were worried about him getting Covid he was stuck in his room only seeing whichever support personnel was assigned to him at that time.
Some of the things that amused me during this book is how he writes. The book is broken down by date. On May 15 he talks about how he writes. He used Microsoft Word and he prefers to free-write and see what comes out. Sometimes a very odd word eventuates such as ‘hamburger’ or ‘souvlaki’ which have absolutely no bearing on what he was talking about but illustrate how he writes. Sometimes I laughed out loud at the word that came out.
There are times when he explains in detail some part of the system that keeps him alive. 6th August is a case in point. He talks about his tracheostomy and how the equipment breathes for him. This is one of the things I’m most fascinated about. I have a little understanding of how I breath, but to have to sit (or lie) there and have a machine breathe for you is totally beyond me. Having read this entry I now have some understanding and am able to project myself into that space for a couple of breaths. But the humour he brings to his world is mind-blowing. He talks about his tracheostomy as being the ultimate piercing and an extreme fashion statement.
Anyway, I loved this book. I will probably read it again some time in the future when I’m feeling the need to understand a little more.