It happened in the garden and fortunately Duncan (my husband) spotted me fall to the ground whilst he was looking out of the window.  All I thought was “oh no” I have not made a will – and then, who is going to sort out all my boxes containing my tut?!  I’ve thought that bizarre when you are going unconscious, and nearly dying!

I was nearly six months in hospital including neurosurgery to drain the bleed, at Addenbrookes Hospital, followed by intensive rehabilitation in Norwich.  I experienced such a great loss and at first.  I could not even comprehend what it meant for me and how my life would continue now that I had a serious disability.  ‘Why?’  I kept asking ‘why?’

When I was discharged from hospital after my stroke, I developed epilepsy.  I cried all the way home after being told by the consultant.  So now I had this to contend with too.  Seizures are the most horrific experience.  Then later, and six months after discharge I had a serious fall, fractured my hip badly and had to have a total hip replacement.  I had seven other falls since, fractured my pelvis and my shoulder on two separate occasions.  I feel like a walking disaster, literally!!

Loss, probably the same for many people, has been a frequent feature in my life and it is multi factorial, but as I reflect on this I can begin to see how each loss has offered a platform for the next stage of my life.

My childhood was filled with anxiety, filled with sadness and grief and I was lonely.  My parents, from a strict Brethren Christian background, had an extremely acrimonious breakup.  I still feel ripples of this even at the age of 62 and both parents have since died.

Even as a child I struggled with my sexuality in the light of my faith as it was interpreted then.  My Christian faith still runs deep within me and is at my core.  I was seen as the school “poof” (it was the 1970s), and this caused me further loneliness.  It was only since growing up and reading a book one school friend wrote about his childhood was I made aware about the positive impact I made on his life.  As a child growing up I wanted to change my sexuality.  I tried “conversion therapy” in various forms.  I talked with trusted friends about it.  My sense of honesty, integrity and humour maintained me.

After school I set off to complete a degree in nursing, much to my father’s disappointment.  I worked as a nurse, then completed a general management training scheme and became a manager in the NHS – I was set free.  Eventually I managed cancer services at Barts and the London.  I loved it, passionately.  It was difficult to leave behind.

In 1999 I became chief executive of Richard House Children’s Hospice, in East London.  Again, I was passionate about it.  I “owned it”, as I established it as an organisation, literally, from the ground up as it was being built.  It was a turning point because I also met Duncan who I was to eventually marry, when it became legal.  It was in 2008 we had our civil partnership converted to marriage eight years later – what an amazing thing after so much rejection and over many years!

In 2017 I took early retirement, due to ill health, and I had to give my baby away (Richard House).  I felt the loss keenly and struggled with it.  I still do.

My career in health care had a professional interest in death, dying, loss and grief, and how communities can offer support to those that might need it.  My stroke has made me experience loss I have never felt before.  Loss and grief are now with me personally rather than professionally.  But, over the years I have survived the impact of loss, using it as a platform to move forward to take on new challenges that have been very rewarding.

I never imagined being in a wheelchair, walking with a stick, feeling unstable and not being able to use my left arm and hand.  I cannot do those many things I hoped for in my retirement, like riding my bike, gardening and playing the piano, etc.  It feels so cruel and like I have been robbed.  I often cannot bear the thought of being like this – and for the rest of my life.  It is a distressing feeling, and at times completely overwhelming.  When this sense of grief arises, it is like a pressure pushing up through my body.  I want to run away, but I cannot and I need a break from myself!  But I carry on.  I have no choice.  I remain determined.

I have to watch Duncan and others do so many things I crave to do.  It is so frustrating, so desperately sad and of course when he, and others do it – it’s not right, for me at least!  It’s not the way I want to do it.  Some people tell me to create new ambitions and goals; do jigsaws, do crosswords.  I want to scream!  I often ask “why?”

I am determined though, and committed to my recovery.  I have a rebellious hope and my aim is to recover my independence and my mobility as much as I can.  I attend a gym for people with disabilities, which has given me a lot of confidence.  I am now practising walking with a stick.  I work with a physiotherapist, with whom I have developed an amazing working relationship.  The fun, laughter and support offered helps enormously alongside the physical rehab work.  I am now beginning to walk without a stick and kneel down to the ground.  I lift weights, walk on the treadmill and other activities.  My health, confidence and weight loss are significant.  I power on!  Determination and firm will power have been crucial.

I have not let this keep me back from our retirement project to restore our quirky Georgian House with my husband.  I will not give this up, despite how ridiculous it might sound.  We press on – and I love it.

I am in the process of gaining my driving licence back (hurrah), I am setting up a stroke support group in Diss, with the support of different Strokes, I am involved some NHS patient assurance work, and I use my website to offer blogs.  I am busy!

I once heard a story about an ex prisoner of war and the horrors of a concentration camp.  He was asked about where was his God in his desperate situation.  The answer was that He was right there with him – often deep in the poo!  This offers hope despite our circumstances.