I’ve just finished reading “Every Note played” by Lisa Genova and am writing this through tears at the beautiful, insightful and moving portrayal of someone living with ALS.
ALS is another name for Motor Neuron Disease (MND) and I could see many parallels with MS. I have a fascination with reading about a life changing diagnosis as I can obviously relate to the characters and empathise.
I can relate to how the protagonists body began to let him down and how his initial denial led to fear and isolation. I can also empathise with how he didn’t want to confront his situation and let other people in to help him.
I’ve also felt despair and loss at all the things I can no longer do and things I might miss in the future due to inaccessibility. I can still feel positive about things I can do though and can still hold my own at work which has such an impact on my mental health and sense of self-worth.
What shocked me about MND though is the relentless speed at which things deteriorate. In a matter of months everything can shut down and become useless; even vital functions such as breathing and swallowing.
With MS things progress so much more slowly so we have a chance to adapt and get our heads around things. We have relapses that we, sometimes, fully recover from and progression is often gradual. The prognosis isn’t definite either as with MND and no two people are the same so we have hope.
The other striking difference is how much we can do to help ourselves. We can improve things slowly with exercise and watch what we eat to improve fatigue. Those with MND are passive in their bodies destruction but we MSers can be pro-active. This has inspired me to finally get off my backside and do some exercise! There’s plenty I can do whilst seated to improve core and upper body strength.
The other valuable insight I gained from reading this novel is how care givers may be feeling and how it’s easy to forget their needs whilst wallowing in your own self- pity! We mustn’t forget to thank them and acknowledge the help they give.
It also brought up serious questions about the vast expense at paying for care and makes me more determined that we protect the NHS in the UK.
As usual when I read a book I love I look up what else the author’s written and it turns out I’ve also read “Still Alice” and “Left Neglected” by Lisa Genova. They’re both inspiring tales of life shattering health conditions and I can recommend them both. It’s great to see the tragedy in the human condition explored so brilliantly. All 3 of these books have helped me see that MS sucks but it could be worse!