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.
I'd love to hear what you think! Do leave a comment if you have anything you'd like to say about this topic. If you have any difficulty with this process, please see the Site Help page. Please bear with me if it takes a while for me to respond; I really appreciate you taking the time to read and comment on my blog, but I'm not always well enough to reply. Thank you :-)
2 comments:
This post really resonates with me. I used to play the viola. Although I didn't start playing it until age 11 (prior to that I played piano, flute, and sang), but it very quickly became very important to me. The viola pretty much took over my life. I spent hours every day playing - not because I had to, but because I wanted to! My viola got me through some extremely difficult and even dangerous times. It was my first form of therapy. Everyone who heard me - including my instructors - fully expected me to go pro and make a career out of it. I agreed that was what I wanted. Oh, and I also played in the worship services at church!
Then ME came. Suddenly my playing hit a ceiling. No matter how much I practiced, I could no longer improve. In fact, it seemed the more I played, the worse I got! Finally, sadly, I put my beloved viola (an extremely nice, professional level instrument whom I'd named "Chocolate" because it smelled like dark chocolate for some reason) away. I took it out once in awhile, but always replaced it, frustrated with my limitations. It has now been sitting in its case in my closet for years, completely untouched.
It's so sad the things this illness steals from us. My old therapist, whom I was lucky enough to be able to see during the earlier stages of my illness, once told me that grief is an ongoing cycle. You're never "done" grieving. You grieve, find acceptance, and later on grieve again. The grief usually gets a bit easier over time, and it usually begins to take less time to move on to acceptance, but you're never really done grieving something like this. Knowing that has helped me expect the waves of grief that come once in awhile and not feel bad for not having "figured it all out" by now. It's never easy, though. :-/
Btw, that poem at the end is just perfect! Did you write it? I've never seen it before. Thank you so much for sharing your thoughts and experiences on this. Sending big hugs your way!
Thank you for your comment Brooke, and I'm so sorry it's taken me so long to reply!
I'm sorry you've had a similar experience (although I was never as good as you!!). I know what you mean about it being a form of therapy. I was hesitant to post my feelings about the violin as I know it sounds a little weird to non-musicians, so I'm really glad someone understands!
(Around my 18th birthday, when my parents and I went to collect the violin after it had been restored, the man told me I had to at the very least draw the bow across the strings a few times once a day, and then go back to him after six weeks for him to make adjustments - because the instrument actually changes/adapts to the musician, so he would then be able to optimise it for me. I have no idea if that's true or not but it was a waste of his time (and made him no extra money) if it wasn't true - and it certainly fits with how I feel about the violin. Anyway, that's off topic, but I just thought you might be interested to know that!)
Haha, I love the name of your viola! The viola is such a beautiful instrument. I will dream that one day we'll both be fully well and we'll play duets :-) I never named my violin, I'm not sure why; I think I just couldn't find a name that really felt right.
I totally agree with your therapist about the cycle of grief (hence the awful onion cliché! It was the only phrase I could think of at the time!) Yes it does become easier over time, but you're right, it's never actually easy.
Haha, yes I did write the piece at the end, although I'm not sure I'd dignify it with the term 'poem'! I almost didn't post it because it's not exactly my best, but it just came out that way and it felt right to post it, and the beauty of this being my blog is that I can post what I want!
Thank you so much for commenting - I'm just so sorry that you do understand (and I know that your illness is much more severe than mine so has taken you to much deeper places). Sending big hugs to you, too xx
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