"I used to..."

This morning Facebook popped up a memory from four years ago, the year before I got sick. It was a photo I had taken during a long, solo bike tour in the Trossachs. It was just me and my bike, accompanied by the sounds, sensations, and feeling of being me in nature. 

I vividly remember my adventure on that particular day, and how my body was capable of propelling myself up the hills, breathing hard, sweating from the exertion, my heart pumping energy around my body. With each pedal stroke I could hear my tyres cross the ground, progressing forward over the many miles I covered that day. I didn't need or want anyone or anything else. I was making my own way, strong and capable, grateful and proud of my ability to be independent where and how I wanted. I thrived off the sensation of feeling every single corner of my body swell full of content, full of my life force.

A Trossachs Adventure - June 2013 ©

When I first got sick, the only piece of helpful advice I ever received from a medical person was that I had to completely erase who I was, and redraw myself with time. Take a moment to think about that statement, and what it entails. "You need to completely erase who you are, and draw a new version of you."

It was true. In order to progress through the illness, I really did have to let go of everything in my life that defined me up until that point. EVERYTHING. 

This included the ability to create and enjoy days like my adventure in the Trossachs, and all the positive feelings that come with that. It included biking, running, climbing mountains, dancing (I was a devoted Tango & salsa dancer). Shortly afterwards this was reduced to walking to the shops, and finally came to the point where just trying to sit up in bed was more difficult than any physical task I had ever done before, eclipsing even the effort of running a marathon. 

It took me a very long time to come to terms with this. I was reduced to no identity, no ability at all, helpless as I was forced to watch my once strong body and mind - so core to my self-identity - wither, wilt and completely break down to a broken, useless state.

I always remembered that piece of advice, yet somehow I could never fully let go of the belief that one day I would once again have an identity that was driven and defined by those physical activities that fill me with that life force. 

Fast forward a few years, and I have come out of the worst of the illness, I have started shaping a new identity, finding day-to-day ways of managing this illness. What might appear like OCD is my way of coping with frequent, significant memory loss. Ritually ordering my life is a mechanism of ensuring that I don't forget key things - particularly important when you live alone. Whilst I might appear quiet or reserved, I have to so carefully control all my efforts and energy because I can't afford to have uncontrolled outbursts. Even though inside I am still sparked by the same me, the same soul, everything externally has to be carefully considered, expectations determined, energy expenditure calculated and measured. My life has carefully controlled boundaries which I can't dare exceed for risk of returning to that broken state. Who I am inside and who I am allowed to express within those boundaries feels like two different people. (It sucks.)

Over the past year I have started rock climbing, and through it found some strength returning to my body and experienced a scattering of incredible days where I have been filled with that life force again. But when I look at myself in the mirror it can be hard to see anything else apart from a sick, decayed, weak, and ageing body that has no cardiovascular health, and that simply feels old. I am also with a new partner, who maintains a physically active life the way I once did, who can actively shape his body and enjoy working it hard. Whilst he has been instrumental in supporting my climbing and getting stronger, my comparison against his ability makes me feel aged beyond my years, incapable, and yearning for the days when I could keep up and do these things too. I wish he could have seen me then, instead of this insecure shadow of who I once was. It makes me wonder: "I can't keep up. Why is he with me? What have I got to offer?". (Clearly, the topic of body image, self-value and illness needs its own blog post.)

My emotional responses to being with someone who so strongly embodies who I once was, and seeing this Facebook memory and reliving the feelings of that day, show me a lot of things. Evidently, parts of my self-identity and self-value are still deeply rooted in an ability to do physical things, when I feel my life force the most. I haven't been able to erase that, and I question if I ever will. It has the consequence of a near-constant companion of sadness and grief, particularly as "I can't" is a more frequent response now than the "I can" of my previous life. "I can't" has felt like such a negative statement to have to make, and quite often fuels that feeling of unattractiveness and inability. But remarkably, somehow it also fuels the determination that this is not going to be my life forever; I don't want negativity like that in my life, so I'm actively trying to say "I can't" so that I can take care of my body so it can get better, rather than saying it so I remain sick. There's a difference, and it's hard to strike, but it is there. 

Through carefully monitoring every walk and rock climb and yoga session I can chart how my ability to do things - the moments where I have been able to say "I can" - is increasing over time. I can now compare this to a year or two ago, when I was more ill, and see the progression I have made. Even if it is incredibly, painfully slow, and still so far from where I hope to be, I can draw positivity from that and find some pride in my accomplishments. But acceptance of just how long this is going to take is hard, on some days impossible, and sometimes, when I really miss who I once was, it's just not going to be a good day. 

I am redrawing myself, and it is often a painful thing.