I have been very lucky to read so many amazing books in 2019 and this one is no exception.
‘Strangers Assume My Girlfriend Is My Nurse’ is written by Shane Burcaw and is a collection of funny and very insightful tales about the first 25 years of his life living with the condition known as Spinal Muscular Atrophy (a muscle wasting disease).
He needs a wheelchair to get around and requires help to do most of the things that would be considered normal everyday functions – eating, bathing, going to the bathroom, pretty much everything really.
But don’t even consider for a moment that he doesn’t lead a happy and fulfilling life.
He has a job writing (hence this book and several others), runs a non-profit organisation, raises money to purchase and distribute assistance equipment to others who have the same condition and gives motivational speeches around the United States to schools and other organisations.
He has a very supportive family, friends and loving girlfriend (now fiancee as of a short time ago) with whom he lives in Minnesota. Yes – she is able bodied and they have a full and complete physical relationship. Apparently the nature of that relationship is an endless source of curiosity to many so he does address it in the book.
It is a fact that he has a condition that complicates his life, making the simplest things or experiences more difficult and which requires a lot of thinking and planning to overcome. But he doesn’t let that stop him from pushing forward and living his life.
And did I mention he does this with a wicked sense of humour?
He explains that this was something he had to develop in order to help him cope, not just with the technical aspects of day to day living and all that comes with it, but also to the reactions of people to him which can be well meaning but are frequently ill informed and without real understanding of his condition or being disabled.
Quite a few of the chapters talk about incidents and moments in Shane’s life that have altered his own thinking and outlook which in turn has helped him cope with the long term implications of his condition – further incapacity and possible early death – as well as fear, doubt and the guilt of feeling like a burden to those he loves.
One particular chapter concerning trying to travel by air with a wheelchair was extremely frustrating and I was only reading about it! But to actually be in that situation … ahhhh!!!!!!!
Yet he never speaks with the voice of self pity and doesn’t want the reader to feel that for him either.
I absolutely loved this book and raced through it in very quick time. Shane makes the chapters very readable and articulates how he feels so clearly that reading this book was a real pleasure. It also helps the able bodied within his audience to try and gain an understanding of his point of view, which is the very least that we can do for him and, in fact, any person living with a disability.
This is an excellent read and I would highly recommend it to anyone.
(Header Image: Sarah Kreig)