Yesterday I was having a text conversation with an old friend and found myself typing ‘…at least I now know what I’m fighting.’
It troubled me as I wrote it but I couldn’t think of another way to describe recent mixed emotions since my new diagnosis of Ehlers Danlos Syndrome.
I have since been thinking a lot about our thoughts on illness as a society. Every week the local paper has obituaries on people that ‘lost their battle’, ‘fought right to the end’ fighting whatever disease they were gifted.
I say ‘gifted’ on purpose as many sick people do feel that no matter how awful their illness is, there are moments when it feels like a gift to become one of the special chronically ill. Then there is the thought of when does illness become disability and why do we feel that we should be fighting?
When I was living with a diagnosis of M.E I spent the first few years fighting everything about it. This illness that had taken away my independence, work and everything I loved about life, had to be beaten into submission.Fighting takes a lot of energy though, it’s aggressive and if you treat the illness as an enemy you become separate from it, and with something as disabling as Severe M.E its not an easy battle to win. The more you fight the weaker you become. The M.E gets bigger and more frightening. I have a dear new friend on Facebook who has been a long term sufferer of very severe M.E. she refers to her ‘Dragons’. She writes beautifully about her fairytale existence as a Sleeping beauty who has regular battles with these fire breathing monsters. They wake her in the night, they ravage her during the day, but she continues to fight them. It’s a great way of describing, and for her, coping with such a destructive illness.
Throughout this time I knew that something inside me was ‘broken’. I didn’t know what but I knew I had to find the broken pieces before they could mend or at least be gathered up and cared for.
When you know that something inside is broken you feel that the illness has becomepart of you, something that maybe cannot be fixed. Many Doctors in the UK, and the NICE guidelines, treat M.E as an illness that can be treated by psychotherapists, they don’t believe or treat it as a progressive or physical illness so you are made to feel that it may pass one day, you will ‘beat it’. If you admit to feeling that it can’t be beaten then you are treated as a ‘negative person’ who is choosing to remain ill. If someone lost an eye or limb, no one would be expecting them to grow another one, or replace or fix what was broken. Acceptance becomes the key to ‘recovery’. People with severe and even moderate M.E can be suffering with a massive amount and variety of ‘broken’ pieces. Private tests will show that the immune system is broken. Mitochondria have stopped the Krebs cycle, adrenal glands, liver, kidneys and heart can all be ‘broken’. You are however denied the tests to either find out or test what is still working and what is broken. How can you fight what you don’t know? Acceptance is all that you have, lie back and observe your body, listening to what it’s telling you.
In my case I have now found that its my collagen that is ‘broken’. It is a huge relief to know that my instinct was right. However I still have a long way to go to understand how and why, and more to the point how to fix it. Ehlers Danlos Syndrome isn’t something apparently, that you can fix, it’s not worth the energy fighting this one. Acceptance of my body’s limitations, acceptance of my disability. I do feel that at least now I know my ‘Dragon’. Do I befriend it and try and live together in my body in harmony? The alternative is daily battles, never knowing when my dragon will awake and attack me. I want to think that now I know of its existence it can feel loved and nurtured, no longer an ignored and feared monster.
My sons were naturally upset by the diagnosis, EDS is hereditary, luckily for them it’s more prevalent in females. One son was worried if he had a daughter, would she have it? Whoa! By the time my sons have children unborn babies will be scanned for such genetic ‘imperfections’. Would she be allowed to be born? I’m sure that my parents would still have had me if they knew I’d be disabled at forty.
I believe that it’s society that needs to accept the various ‘imperfections’ that make up human variety. We, I, am lucky to be living in a country that allows for wheelchairs and restrictive diets. My husband has a good job and so we can afford (just) all the extra help I need to live.
Another dear friend has a very special son. When a Rabi visited her family, he blessed her other three children as he entered, when he reached her son he stopped and said extra blessings and actually was honoured to greet her son. He said that the disabled children are very special advanced souls. They have come here as a purely selfless act. They haven’t been born to advance their own soul but purely to teach those around them. When you sit with Jose his light radiates, you really could sit looking into his eyes or holding his hand all day. He speaks wisely, to the point. I know that he would frighten many people. He will always need many people to care for him but that doesn’t make him ‘in-valid’. Those who meet or know him are touched by him, deeply.
I hope that through my journey of health and illness and now disability, I can remain to be valid. I have been blessed by the last five and a half years. I’ve been given plenty of time to think. I may have lost some friends as I can’t get out as often as I’d like, but I have made many many new friends, some I’ll never meet in person but they are friends none the less. I have learned compassion, not just for other sick or disabled but everyone. We all have our own dragons, you never know what battles your friends and neighbours are fighting, or what dragons they have tamed.
My fighting days are over but that doesn’t mean that I’ve given up. I want to learn everything I can about my own dragon, find out what it needs to nourish it and what we can do to be friends and work together. Ultimately we all want to be happy and be loved, if I can learn to love my dragon, maybe he’ll dissolve and become one with me, unified in a common goal, peace.