I’ve just read ‘Still Emily’ in one sitting, on holiday surrounded by people, and have had to stem the tears pricking my eyes on more than one occasion. Emily’s story touched my heart, not with tears of sympathy but of love, of admiration, and in some sense, of understanding.
Emily began life healthily and despite what could now be seen as warnings, the shock of an NF2 diagnosis at the age of 17 was huge. This condition would go on to rob Emily of her hearing, her balance, ability to walk and more, yet she has refused to give in to the condition, not willing to be defined by it, and continued in her walk with God, perhaps closer than ever might have been.
(Neurofibromatosis Type 2 (NF2) is a disorder that causes tumours to grow on the body and throughout the nervous system. Depending on where they grow they can cause conditions like deafness, severe balance problems, facial nerve paralysis, spinal cord compression and swallowing difficulties.)
‘Still Emily’ is a movingly honest memoir of Emily’s journey with NF2. Of the highs and lows – of which there are many, including the moment at age 17 when Emily’s family said goodbye to her as she lay in a coma, not expected to wake up. Like the times when she has been robbed of her sight for a period as well as hearing, in order to allow her eyes to rest and recover as they work harder than ever. I’m not sure I can begin to image the isolation and fear that must induce.
It is also a story of a family thrown into turmoil, but choosing to respond in love. Choosing to support, choosing to demonstrate the love of God in the face of adversity, united in their faith. Christian faith is of course a theme than runs through the book, not in an ‘in your face’ way, but in a gentle undercurrent, God’s presence and faithfulness the foundation in this inspiring story.
As anyone with a long term condition will know, it can be hard to remain always positive, even with God at your side, and Emily is honest about this, but also reminding herself, and us the readers, to focus on the bit that can be done, not the bit that can’t, as she recalls learning to sit again, able to do 20 mins at first but not the half hour she hoped for. The subtitle to ‘Still Emily’ is ‘seeing rainbows in the silence’ a choice that Emily has made – to always seek the moments of joy: ‘I choose rainbows. Every time. Even when they are invisible, I carry on looking…’
One of the things I love about this book is the truth that we are all worthy, no matter what we can or can’t do. A simple reminder that came to Emily when all she could do to help a fellow patient in hospital was press the ‘call nurse’ button, but in that moment, that was what was needed. This was something I too learned when recovering from back surgery last year, even in the tough times, in suffering and in the moments when we feel useless, helpless and alone, that to God we are perfect and he can use us all, whatever the circumstance.
This is a book about endurance, the faithfulness of God and above all, hope. In endless operations, physio and appointments, in pain, in disappointment, there is still hope.
‘Still Emily’ is available now from Malcolm Down Publishing, priced £7.99.