Ros Bracewell (58) is retired, has a degree in Theology, and keeps herself busy by mentoring Theology students and in her spare time, she is writing a book about journeys, both actual and spiritual, and is passionate about history and archaeology and her Canine Partner dog, Pip.
When I asked Ros about her illness her first response was this, "It's a little bit complex."
In 1997 Ros, who was always keen on sport and outdoor pursuits, was out running in Germany, where she lived at the time with her family. That run, was to lead to a very different life for Ros. That day Ros fell over a rock and landed on her back, this resulted in Ros incurring a spinal cord injury. Ros was admitted to a spinal unit in Germany where she had a serious operation on her lower back. The spinal injury is what the consultants referred to as 'in-complete crush’; her T12-L1-2 vertebrae were broken. Ros said, "During my time at rehabilitation I worked up to being able to use a lightweight manual wheelchair, as my arms were fine, and elbow-crutches to walk a bit. Six months after I had my accident I continued my rehabilitation, when I returned to England, at Frimley Park and Atkinson Morley hospitals; things were starting to look up." But it was not to be for Ros, as she goes to explain what happened next. "I was serving up Sunday lunch and suddenly the left side of my face and my left arm and my left side generally just flopped, virtually paralyzed.
Ros was referred to the King Edward VII hospital in Midhurst to have a MRI scan to establish the cause. At first the consultant thought it could be a stroke but results showed it was a massive Multiple Sclerosis (MS) attack. For those who do not know much about MS, I asked Ros to explain to me how this disease affects her:"The human body has muscles, bones, veins and nerves, and the nerves are like the electrical wiring in a house. Electrical wiring has twisted metal inside it, covered by a plastic sheath and the plastic sheath protects that wire inside and makes sure the electricity runs to all the right places. If you have MS which is an autoimmune illness your body stops producing the myelin which is the sheath around the nerves and starts destroying the myelin instead. In other words, the body actually attacks the protective sheath around the nerves and that means the nerves do the same as the wiring in your house would if it was eaten away by mice, it short circuits. The electricity that makes your body work, starts working incorrectly so you can't move your legs or your bladder will not function or your eyes don't work."
The MS is the degenerative part of the condition, whereas the spinal cord injury is as it is. MS can be a very unpredictable condition, but in Ros’s case where she suffered a sever attack has meant that whilst her condition is more stable, she will never be able to walk again.
"I have been coming to the Hospice for about 2 years now. But I think one of the most important things in my story is that when my consultant mentioned to me coming here I was very anti the idea, not because of it being a Hospice, but because I still liked to think of myself as being in rehab and that I was going to get better."
Ros had to make a huge adjustment from being a candidate in rehab and being a in a palliative care situation. "The good thing is that the Hospice has helped me see that what is offered at the Hospice can be both, it's both palliative in that it helps me manage the symptoms that are only going to get worse, but it is also rehabilitation because it has improved my quality of life."
Ros's first experience of the Hospice was attending as an out-patient at the Day Hospice, here she explains how that felt: "I was utterly terrified not only because I didn't know what to expect, but also the emotional impact of being in a palliative care setting, because I had been used to going to the spinal rehab unit which was very different."
"When you start coming to the Hospice, you start to build a network of relationships and you find it easier to speak to some more so than others. But the teams work so closely together you don't feel you have to repeat yourself all the time. It's an integrated process and for me, getting to know Jayne in the chaplaincy has been very important as well."
Ros’s favorite services are the massages and she really values the complementary therapies as these are the treats that she is unable to get outside of the Hospice. Ros says that the Hospice is the only place that she ever feels comfortable expressing fear for the future, or frustration with the pain, or anxiety about the disability.
Being involved with the Hospice has also been a great relief for her three children who are 26, 28 and 30 years old, since they are growing up and it prevents them from worrying too much.
I asked Ros what her thoughts would be if she had not have been referred to the Hospice and she said very clearly "At the risk of sounding melodramatic, I could have committed suicide by now. I had reached a point where the pain and isolation was getting too much, but here at the Hospice, I receive a joined up holistic service”. Don't be afraid of the word 'Hospice', the medieval meaning of the word is 'shelter' and it should be seen as a place of shelter and nurture and hospitality rather than Hospice equals a place to die. A Hospice is where you can be an individual”.
And lastly Ros has always loved that the Hospice welcomes her dog Pip who likes getting a massage, as he works hard too. Ros's story is a great example of how having an illness doesn't mean you have to stop living your life; you just need to change how you live it.