Loss of a friend and raising awareness

Today I write with a heavy heart. I lost a friend to suicide. Yes, he had CRPS, but he actually coped astoundingly well with the condition. His love kept him going. His love of his God, his love of his canine companion and his love for life. He enjoyed being outdoors and growing veg’ in the garden sharing photo’s of his crops as many of us gardening types do, he really enjoyed going fishing with friends until his condition worsened to the point where he could no longer do so, he loved his music (from Beethoven to ACDC) and he just loved and believed in goodness so strongly that every time his health knocked him down or stopped him from being able to do something he found the strength to dust himself off and grow from it.

His first response would be to share the beauty he felt in that recovery with his friends by posting in a CRPS support group where he knew fellow patients needed to hear just that. He always supported fellow patients, encouraging them to keep going, reassuring them that he understood the pain, the loss, the limitations and yet that there was still beauty in the world. Still a life to be lived. Still love to experience. He truly was a shining soul who lifted so many in dark times of their own.

His outlet was his poetry. That’s how he found the words to express his experience with CRPS. A condition so removed from common experience that words just don’t suffice until you suspend the usual way of communication and get creative with them. He let those words fall from his mind onto the page and they captured moments living with such intense physical pain. Burning. Loss. And yet hope. Love. The will to continue.

Cross' poem, CRPS doesn't own me (2)

One of Cross’s poems that he shared on his public page to raise awareness about CRPS

So yes, he had coping mechanisms that allowed him to find the strength to focus on the beauty in life to keep going. All of us will have a point where our situation finally outweighs our coping mechanisms. In fact I wrote about this just 12 days ago and it rips me apart to know that he so desperately wanted those around him to understand. He appreciated my article and wanted others to read it to help them to understand what he had been feeling for so long. He had been talking about suicide on and off for a long time by then. It was one of the reasons I wrote the post. I needed to create something that fellow patients could share with loved ones that said what they could not find the words to say. To reassure those close to them that it’s not cowardice or weakness, selfishness or meanness or anything else of that ilk. It is human and understandable. That those finding themselves in this situation are not to be treated badly but helped to gain more coping mechanisms, helped to make the necessary changes. Helped. Understood. Helped.

His spirit was strong, his will to live was amazing, his love for others was out of this world, his coping mechanisms worked as any of ours do – only as long as they are not outweighed by the situation.

When the situation is out of our control we have to make what changes we can that will enable us to keep going. As dis-empowered as we can be by our own supressed self-worth, by the lack of CRPS knowledge that causes others to behave badly and/or inappropriately around CRPS patients, we can still make changes. We can change our way of thinking and our approach to our health, we can choose which physio’ we can do at home, we can choose who we are in contact with, change the way we plan our day, we can stop trying to do what we used to do and start thinking about things we can do whilst we are working on the physio’, or when resting afterwards. We can make changes. My friend was unable to do so because even his most personal space was not his own. In such extreme circumstances we can still make changes because there is a social care safety net and a social protection safety net – people we can contact in dire need who are directed by law to help. But when that fails, well, there is quite simply no safety net.

My friend’s safety net failed.

It shouldn’t have.

Public services should not fail like this.

I cannot stress how much we need to spread greater awareness of CRPS and it’s multiple effects. No not that embarrassing Pepsi ad’ with the link to a local support group website which is out-dated and incorrect despite being asked to update and correct it by patients, that is so unhelpful. Every time I see that blasted ad’ I <headdesk> in a way akin to shouting “Whyyyy?” at the heavens. Link to the RSDSA please. They are up to date, they are informed and they have current professionals in the field working with them. 

I haven’t written about my friend’s particular circumstances because another good friend has already done so with her fabulous professional knowledge from working in the medical field and her close contact with our mutual friend. You can read her piece here. I’ve delayed reading it myself so as not to muddle my own writing here, so I shall pop over and read it (and probably have a cry whilst doing so) once I have finished writing this post.

The bottom line is: this shouldn’t have happened.

What I want to do is highlight my friend’s beauty of character, to remember him in the way that his friends knew him and not in the way that a few quotes from his last few desperate and angry days on social media inadvertantly make him seem. He wanted to live, but could find no way to escape his circumstances to be able to do so.

What I want to do is to to highlight the impact that lack of knowledge about this condition can have.

In fact what I want to do is initiate change.

With regards to that – watch this space. And share the link to the RSDSA, the CRPS FAQ of useful links and information on here, and don’t feel you have to keep quiet about CRPS.

There is a drive to get information to doctors on the Facebook page CRPS Research and Developments, so pop in online and ask for a postcard or two to drop in for your doctors to read. This is important. So very important. So many lives are lost to CRPS each year, and if we wait for the general medical field to catch up with the specialist research it will be too long. Too late for another soul who found that their safety net was missing because CRPS was not understood.

There is an opportunity to raise awareness with the RSDSA’s event “Color the World Orange” which you can see on Facebook here. It gives you an excuse to shop for clothes *and* you can help raise awareness. And if you would like to be part of an orange display on here too then please do post your all-oranged-up piccies to my Facebook page here, because I would love to colour this blog orange too, x

There is also a patient-initiated memorial event which you can see on Facebook here. If, like me, you do not want to release balloons owing to the potential effect on wildlife don’t worry there are other ways of raising awareness and it would be wonderful to have your company raising awareness in honour of such a good soul.

You can purchase awareness tee-shirts and other items on the CRPS, Art & Spirit Cafepress shop here. All of the proceeds go straight to the charity (currently in the process of setting up, and there are no wages to pay at all thanks to our awesome volunteers with a variety of fabulous professional skills) which is involved in sharing information and knowledge with those who need it to help bridge the gap between doctors and patients. If you can’t find what you’re looking for in the shop then let the CRPS, Art & Spirit team know here because we may well be able to rustle up a design at your request. 🙂

If you knew Cross and would like to leave a condolence message then you can do so here.

I am so so glad and honoured to have known him. I will always remember him because he has a place in my heart and that’s forever-land in terms of my memory.

Cross, be at peace my friend. Your wish to educate others and spread the word on CRPS to help fellow patients will continue, xxx

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Much love to you, readers, as always.

Thank you for looking into one or more of these easy awareness raising events, it means an awful lot to us patients and it would swell my friend’s heart to know we are working on his fondest wish.

x

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