(Can I tell you a secret?
There are moments when I am broken in spirit and overwhelmed by a profound sense of loss. I try to remind myself that there are countless thousands, if not millions, of people who are in a worse position than I am but my heart won’t listen. I put a brave face on to the outside world, set that stiff upper lip but all the time my heart is breaking.
Most people feel that it’s handing over your self-care to another person that causes a sense of loss, a sense of shame and a complete loss of dignity. But the reality is that illness, chronic illness, will have robbed you of every last shred of dignity long before you get to that stage. That dignity comes from our identity, our sense of self.
I cannot think of anything worse than anything to abandon self-care to a stranger, someone appointed by a remote, impersonal power through a collective, communal sense of duty to look after those unable to look after themselves. There is perhaps slightly more grace in being cared for by loved ones but maybe that’s the point and I speak too rashly and harshly. Think of just the nursing profession, strangers who dedicate themselves to the care of the needy and vulnerable. Sometimes we do have to hand ourselves other to strangers, to specialists and to experts, who are best placed to help us. I think what is needed is trust, we need to be able to build relationships, to connect and to trust, whether that person is a stranger or not, when we hand over the very last vestiges of our dignity and identity. Perhaps the sense of shame comes only from myself. A sense of failure too perhaps.
There is that moment where your life divides into two parts, the before and the after, that moment when a doctor or other medical professional gives you that diagnosis. Perhaps you only hear incomprehensible medical names and terms, perhaps you only comprehend that sense of fear, dread and threat. But what is lost, and will be lost, is your identity.
If illness only deprived us of being able to climb Mount Everest, of running a marathon every week, of being able to run six international businesses at once … well, wouldn’t that be bliss? Few of us really would be impacted after all. But illness, chronic illness, is so much more than that.
I don’t have that clear demarcation, I don’t have the privilege of ‘having been’, I have been ill all of my adult life and in some ways I know nothing else. That makes me sad, sometimes I feel cheated of my potential, of being able to have a life that I choose. I’m not one for self-pity but grief doesn’t always rationalise, it is a tidal wave of loss, from which there is no escape.
In fact, it’s when things are going better mentally, when I find a focus that I feel this loss the most strongly. I cannot be who I want to be. I cannot be who I am. I disappoint and frustrate myself. When I can see so clearly what I want to do, what I want to be and yet this mongrel-beast gets in the way, refuses to let me be, never mind achieve, I grieve. I have found my feet in one sense but cannot crawl from the bed in the literal.
It’s absolutely crushing.
I don’t want to climb mountains, or run marathons or international businesses, I just want to be me. All those things that I have worked so hard to achieve, I have worked so hard to find myself and to be comfortable in my skin, to have that dashed away from me, it’s heart-breaking.
And so often it’s the trivial things where I feel that sense of loss so keenly, the sort of thing that you wouldn’t ever think could really matter or be important. Things like being able to cut vegetables properly. But when you think about it, it is a skill and one that maybe you had to work at. It is something small that says a lot about us, whether we cook, whether we enjoy cooking, whether we’re any good at cooking … Instead the sharpest knife becomes blunt and clumsy in uncoordinated hands, food mushes rather than slices, there is no technique and if half the pieces are of similar size, well then, that’s a miracle in its own right. And all the while, there is that voice inside your head that tells you ‘this isn’t me’.
But it is.
Illness isn’t a straightforward, downward slope to the total loss of dignity either. It often ebbs and wanes. Sometimes this can be more painful; you can’t accustom yourself to a level of loss before proceeding, or descending, to the next. What you can do one week, one day, one hour may quickly become impossible. You can’t take anything for granted. Each new setback is enough to make you howl. If you had the energy.
Our sense of identity is tied so closely to the things that we enjoy. Not being able to do the activities that we enjoy, not being able to eat the foods that we enjoy … illness leaves no aspect of us, of our identity, untouched. But it’s not just about not being able to do the things that we enjoy, take for example my knitting. I love knitting. It’s one of the few activities that I can consistently manage, although in varying proportions. But it’s so much more than just a simple activity; it’s so much more than just one of those things that I do. It’s an expression of personality, of creativity. It is the way that I express myself. When a week goes by where I physically cannot knit, I feel that loss keenly.
I don’t know if illness, personified perhaps, does target those specific skills and those things that so clearly define us as us, sometimes it feels like it does, or if perhaps we just feel the loss more in those areas. If you never had a particular skill or talent then you probably don’t notice or feel that loss so much.
I know that there are people whose memories are bad, totally fallible. I live with one of them. This means I have even greater responsibility as a memory-keeper, I remember my memories and those of others. I’m known for my memory abilities. I am a guardian of family history and stories.
I cannot remember what I did yesterday never mind last week.
I cannot remember words or dates or things that I need to do.
Someone will tell me something and I will wonder out loud how they know that. They then tell me that I told them, just a week ago.
Behind me there is a great void of nothingness, a black hole where memories could and should exist but I remember nothing.
I feel a great sense of shame, embarrassment when faced with the reality of this loss. Actually, it frightens me more than I care to admit.
In so many ways, this is a loss of self. I’m losing a skill that I am proud (!) of and I risk losing my history. In a way, I become homeless, that sense of belonging comes, in the greatest part, through memories and remembered connections.
I have a fear of losing things, my biggest fear is forgetting. It is why I write, it is why I photograph. I’m terrified of forgetting. I always have been. Memory, remembering is important to me. And now I am faced with blank spaces, black holes and that nagging feeling that there really is something that should be in my head right now.
And it’s becoming more obvious. It’s hard to hide your memory problems when you can’t remember anything. I’m oblivious to what has gone before, I risk repeating things or putting my foot in it, like the example above.
Illness takes everything away from you that is precious, independence, skills, talents, memory. There is no dignity in being ill, just a profound sense of loss.