Grief is a funny thing - ok, bad choice of words, but I can't think of a better one right now. Funny 'strange', not funny 'haha'. Just when you think you've done your mourning and come to terms with things, grief hits you like a blow to the stomach out of nowhere.
People who know some of the realities of my current life are often surprised by how cheerful and positive I am. I guess I'm just an unquenchable (ridiculous?) optimist. Don't get me wrong, I am not immune to depression; I have hit some very deep dark places more times than I wish to remember. However, this current bout of ill health is not the first time my life has been severely restricted by major health problems - I think it's the fourth, if we're counting. So even before the ME, I'd already done a lot of grieving and raging at the world about loss of health; I'd already had a lot of counselling and done a lot of processing. Don't try coming to me for any answers though, I don't have any! Life just is what it is; there is no such thing as 'fair'.
When I was given the ME diagnosis, I went into a state of shock, anger and grief. Previous huge health issues have always plunged me into depression, which is completely understandable when your life as you knew it is ripped away; however, depression multiplies your suffering. I am therefore extremely thankful that, this time around, it hasn't happened. I'm not sure why, but I'm not complaining! I don't know for certain, but I suspect my current freedom from depression is due to the extensive emotional processing and acceptance I'd already done about illness; the decision I made during a previous serious health issue to take control of my own medical care and strive for health and life; and, by no means least, the presence in my life of my beautiful daughter, who was not yet born when I had previous health problems. It's a bittersweet thing, as there is a huge amount of stress and heartache and guilt and frustration and worry, bringing up a child when you are so ill. However, she keeps my priorities straight, she helps me look to the future and gives me purpose, and she can make me smile - at least inwardly - even on the most hellish of days. I think my ME-induced cognitive impairment may also be part of the reason; I spend much of my time in a zombie-like haze, so I fail to get perspective and often don't fully comprehend the awfulness of my situation. Not being able to think properly can have its advantages!
So anyway, after the ME diagnosis, I did go through a period of shock and grief, but it really only lasted a week or so, if I recall correctly. The diagnosis was helpful in a way, as at least now I knew why I'd been struggling so much for so long, and now I knew what I was dealing with I could look for the most appropriate ways of managing it instead of just pushing myself to keep going, which is what I had been doing (with disastrous consequences). I very quickly realised that I needed to re-affirm my previous decision to strive for 'life in all its fullness' within the limits of my illness. Not that everything has been plain sailing emotionally since then, and I still have low days when my pain etc is so overwhelming that it blocks out hope, but I have not descended into depression and, most of the time, I am pretty positive and try to make the best of things.
It is therefore quite a shock when grief does its non-haha-funny thing of swooping out of nowhere and kicking you in the guts. And that is what has just happened to me - and about something far less important than other causes of grief in my life, so it was all the more unexpected.
Someone online posted one of those 'getting to know you' type questionnaires, and one of the questions was, "What is your most treasured possession?" My instinctive answer, which may or may not be accurate, was "My violin". I have played the violin since I was four years old, but had always had very cheap (and sometimes nasty!) instruments. On my 18th birthday, my parents gave me a beautiful old violin. She (sorry if that sounds silly, but I really struggle to refer to my violin as an 'it'!)... she had been through the wars a bit, but had been fully restored, and to me the scars on her warm honey coloured wood only added to her beauty and character. I love this violin. She feels like a part of me. I can't really explain it, but she is very important to me. Also I am a Christian, and used to play violin in church; without my violin, I feel somewhat amputated in worship. She is an important means of expression for me.
And I haven't even touched her for over a year.
I used to play her most weeks at church, but I was finding it more and more difficult due to the ME (although I wasn't diagnosed then, and the ME was only mild/moderate but I had already had to give up work). My arms would literally be in pain for the whole week after playing on a Sunday, and it was exhausting, so I had already realised that I needed to cut back on my violin playing. And then in March 2013, a few weeks after my ME diagnosis, I got a nasty bout of the flu. I knew healthy people who were knocked out by it for six weeks; I recovered from the flu itself in about three weeks, but it caused a huge setback in my ME, from which I have never recovered, and I have continued to deteriorate since then. Violin playing has not been possible for me for a long time, due to muscle weakness and pain, cognitive impairment, and sensory sensitivity. (It's a long time since I last went to church, too!) And for me, not being able to play my violin is devastating - but I just got on with things and accepted it and tried to make the best of life. I can't play my violin, but I have many other beautiful and precious things in my life. I'm not even sure where my violin is now; I guess she is either in the spare room or the lounge, but I rarely go into the spare room, and it's been a couple of months since I last made it downstairs to the lounge.
Something about that "treasured possession" question just floored me, though, and kicked me in the guts with grief as I was reminded about my violin. I think it's partly grief of not being able to play the instrument, but I also think it's about more than that; it's a reflection of how reduced my life has become. I don't mean this in an arrogant way, but I have so much potential, so many things I want to do with my life, so much I could achieve; but it feels like my health just thwarts me at every turn. I feel silenced, suppressed, held back.
I know I will come to terms with this. It's just another layer of the (cliché alert) onion of grief. I will accept it and move on and see joy in life once again. For now, though, I just need to mourn for a little while.
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