As promised in my last post, I would love to tell you about a lady I met almost two years ago, who has somehow inspired me greatly and helped me open up my own eyes because of her own sheer determination to not only survive but to try her hardest to live her life to the best despite numerous physical health problems. She really is a true beacon of light for me and several others who know her, and one can not fail to be touched by her extraordinary wonderful personality and sense of humour. I asked Carole if she wouldn’t mind me writing this piece on her, and her answer to me ”of course not, I am proud of who I am, and that I have beaten Breast Cancer and can show others that I can get on with my life despite my disability”
Like myself, Carole suffered and still does suffer bouts of depression. And having got to know my friend really well in this time, I am totally amazed at her outlook on life and also how extremely clever and artistic she is, although she has a habit of saying she isn’t that clever……I do beg to differ with you there Carole!!
Over a number of years we have all read and heard different stories in the news media for instance about the plight of disabled people who have achieved something remarkable in their life. Lets face it we all hear stories about others who suffer physical disabilities, and to a point we can only ultimately try to understand why their achievement is so important and what it must mean to them. But unless you are actually close to that person, or associated with them it is difficult to understand what it is that makes these people so brave and in a way so strong and determined. Lets be honest for a moment, I am the first to admit (and I would dare say like many others that we all have at time suffered extreme bouts of pain, and despite how we deal with that pain we take medicines which in due course will relieve it. Sometimes people choose to try to ignore it and get on with life and hope it will go away in due course….and for some that works. And then were ok till the next time. I learnt a very valuable lesson some years ago, you can’t just ignore pain when it gets to an unacceptable level! And even over the past few years I have and still do suffer excruciating pain and short-term disability with my arthritis when I get a severe flare up, but compared to my friend my own pain is minimal to what she has to suffer day in day out.
My friend Carole suffers from a condition called Hypermobility Syndrome. There is still very little known by the medical professionals about this condition, but a great deal still to be learnt. And her doctors and consultants have called her a walking marvel, because of the extent she suffers from it and how she has managed to get on with her life.
Hypermobility describes joints that stretch farther than normal. For example, some hypermobile people can bend their thumbs backwards to their wrists, bend their knee joints backwards, put their leg behind the head or perform other contortionists “tricks”. It can affect a single joint or multiple joints. As a rule if the odd joint is affected on some people it doesn’t have to be a major problem for them. The condition is known however to lead to arthritis in the joints affected. Realistically there is no stability in the joint, or the muscle surrounding that joint, and as a result it can and does lead to severe disability for some.
So this might be a great for a party trick for some people or being a contortionist or escape artist might have it’s advantages. However my friend Carole on the other hand suffers this condition to the extreme, and has done for many years, she has known she has got it since the tender age of ten, and is now a little over 50 something. Unfortunately it affects all the major joints and muscles in her body, mainly her knees, hands wrists and shoulders. As a result of this she has severe arthritis, and I wonder if any of you could imagine having to have not one knee cap but both of them removed in the last few years, and I hasten to add because of the muscle problems associated with this disability no knee cap replacement surgery is possible. Carole is known by her close family and friends as ”no knees Carole” and that was her own choice of name, not ours.
Because of the extent of her condition, the constant pain caused by it, means that she has to have a cocktail of very strong drugs every day, which doesn’t get rid of the pain, but helps take the worst of it away to some degree, she has to rely on a pair of leg braces for stability around the knees when on her crutches, or otherwise she has to rely on her wheelchair. As Carole also suffers with chronic shoulder,back, hand and wrist pain again part due to the Hypermobility/arthritis and part due to lymphedema, so I am sure you can imagine how difficult that must be to controlling your own manual wheelchair. In addition to all this the medication as well as the condition cause extreme fatigue. And throughout all of this she has had to for a number of years brought up her three children on her own.
Back in 2000/2001 Carole was then diagnosed with Breast Cancer, yet another major health battle was on her hands and the result of the chemotherapy left her with the lymphedema and a very low immune system. Most people including myself would have given up at this stage, because once the depression takes hold of you, especially when you are suffering from one chronic illness, it’s very difficult to fight back, and yet despite all of this, and various other family issues that have contributed to her depression, somehow Carole did fight back and some 10 years on was given the all clear from her Breast Cancer.
Despite all this bad stuff that has happened to my friend, and how badly it all affects her life and quality of life I can only marvel at her attitude to life. In addition to all this she has a remarkable talent for art, her speciality is fine line drawing in pen, the detail of her work is truly remarkable. When I lost my job a few months ago I was able to spend time as her guest at an art group which Carole attends each week, and I worked next to her and watched the of detail and patience and love she puts into her art work, and over a few weeks gradually saw one of her pieces developing . I am proud to say that two of her pieces will shortly be on display at a place called The Public, which is in a town called West Bromwich, in the West Midlands. However please feel free to take a look at a selection of her other art work on the website http://www.outsidein.org.uk and click on the tab Artists, then on about page 4 or 5 click on the name CAROLE (with an E on the end, this is something she insists on me getting right!) where upon you will be able to see a very small selection of her work which includes Tolkien’s Dragons, Steampunk and some Japanese Geisha girls and several other pieces. Carole is able to describe in her own words what her art means to her. In view of her disability/arthritis in her hands , this work is truly remarkable in detail and content and beautiful, as is her outlook and personality.
To me Carole really is a truly remarkable person, whilst on holiday together to Devon last year with another one of our other friends Lesley, Carole and I found that we got on extremely well, and we had a lot in common, we even made each other laugh…..several times in fact. We both enjoyed each others company, she has taught me some art techniques and I have enjoyed teaching her some photography. Whilst up in Scotland the other week, we again got on really well. At one point Carole even had me crying with laughter, this is something I have not been able to do for several years. I have to say that I am truly proud to have Carole as a very dear and close friend and confidante, and despite all these massive setbacks and health problems in her life she truly amazes me.
Carole you are a true inspiration, and incredibly talented and clever person, and a wonderful human being, and you have helped me see life a little differently, furthermore knowing you has some how enriched my life in a way that I can’t explain.
Many thanks for stopping by.