Portrait: Peter

A little bit about Peter 

I had just retired at the age of 58. I was looking forward to restoring our quirky Georgian house, with plans for a B&B. I had dreamt of this as our retirement project. Life was going well. I even enjoyed going to our local builders’ merchants!  

Then “bang” the explosion. I had a massive stroke caused by a bleed as big as a fist (haemorrhagic stroke). I nearly died on two occasions. I am now left severely disabled for the rest of my life.  It has been the most horrific, frightening and distressing experience. It was March 2018 

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! Quite bizarre when you are going unconscious, nearly dying! 

 

The challenges encountered during recovery 

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. 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. Seizures are the most horrific experience. Fortunately, with support of the neurologist and epilepsy nurse specialist, the seizures seem to be now under control. Then later, and six months after discharge I had a serious fall, fractured my hip badly and had to have a total hip replacement, and a further 6 weeks in hospital. Since then, I have had another seven falls, fractured my pelvis and my shoulder on two separate occasions. I am a walking disaster (literally!!).  

 

My career before the stroke 

My career started working as a nurse then completed a general management training scheme and became an NHS Manager.  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.  

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.  

 

Brain injury and grief 

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 planned for in my retirement, continuing to work on the restoration of our house and then opening it as a B&B, riding my bike, gardening, playing the piano, all those things that make me a fully functioning human being. The greatest loss has been my independence.  It feels so cruel. I have been robbed.  I cannot bear the thought of being like this for the rest of my life. It is a distressing feeling, 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 ask “why would I want to do that?” 

 

Finding a way forward 

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 have, until recently attended a gym for people with disabilities which has given me a lot of confidence, and also brought some fun and laughter back into my life. I am now beginning to walk without a stick, kneel down to the ground. I lift weights, walk on the treadmill and do other activities. My health, confidence, and weight loss are significant. I power on! Determination and firm will power has been crucial  

I have not let this keep me back from our retirement project to restore our quirky Georgian House with Duncan. I will not give this up despite how ridiculous it is. We press on and I love it.   

I am in the process of gaining my driving license back, I am setting up a stroke support group in Diss, with the support of Different Strokes, a national charity. I am involved in some NHS patient assurance work, 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 

 

My thoughts/reflections 

• To have (rebellious) hope, goals and aspirations. 
• To work hard with determination to get through 
• To find support and energy from family, friends and other people (all have been amazing) 
• To rehearse contemplation and stillness in the silence of why? Learning “to be” and not “do” 
• That a sense of humour is vital 
• To let tears flow, absorb the grief then let it go and seek how to manage emotional intelligence, with integrity, that helps rather than hinders 
• To take up an understanding of the principles of the Dual Process model – the tension between acceptance and restoration 
• Don’t let your loss hold you back. Your life remains, use it and dance 

 

Link to my personal blog

I have recently made a podcast with a project called the Silent Why. Here is the link