I’ve been thinking a lot about hope recently. I think this stems from me hitting five years with ME this past month. It’s always a hard time wading through an illiversary. I didn’t want to dwell too much on it, but I always know it’s there hovering on my shoulder. 

After five years living with ME as an adult, I generally feel spent of hope, yet hope somehow keeps me going. The hope of being more active with my kids. The thought of doing some paid work part time, walking more than a few yards at a time. I have to think that there will be improvement. I know throughout my illness, I’ve had better times, and I hope for an improved baseline. 

Yet, living with ME, I find my mindset is influenced by my body and the ebb and flow of the illness. When I’m struggling in a crash, hope seems impossible. The person I was can vanish and I have to adapt to the waves of exhaustion and maintain a steady persona so that my family’s life isn’t made miserable. 

This illness has taken me on a journey of spiritual deconstruction and philosophical learning. I’m not sure we have much free will. Those of us with chronic illness can identify with being robbed of a sense of free will. I can’t choose to like eggs. I just don’t like eggs. In the same way, those of us with ME/long covid can’t choose to climb the mountain of recovery or miraculously believe our way out. I’m not sure I can choose to be hopeful. Some days I am, others not so much. So where does that leave me with hope if most days I’m a determinist, that is the view that events are determined by previously existing causes. I’m not sure. But I know that hope is a deeply human condition and that myths, legends and history are scattered with stories of people who are driven by hope. 

I’ve been watching The Last Of Us, a dystopian story, fuelled by a mission of hope. You root for the characters. Adventure stories wouldn’t be much of a read if the protagonist didn’t have hope. What if Frodo gave up? What if Luke Skywalker chose the dark side? We want to buy into the binary of light over darkness but perhaps we live more nuanced lives. Prometheus, the Greek god brought fire and hope for better to the human race and we’ve been seeking the light ever since. Like Prometheus found though, everything isn’t always so simple. The gods weren’t happy that he had given humans this power. He was bound to a rock so that an Eagle would come and eat his liver as punishment. Then his liver would grow back and so would return the eagle to eat it all over again and again, and again. I don’t suppose prometheus felt very hopeful knowing the Eagle would return, and it feels like an apt analogy for living with ME. It’s relentless. 

Living with ME, it’s hard to see beyond tomorrow. I try not to think about the future too much, but I have to think it could be better than it is now, even if I have little agency over the direction of my future, due to this crappy illness. So sometimes I’m hopeful, at other times I can’t see any light beyond the next hour. Often I’m reluctant to be hopeful, because I like to be a realist and hope is painful and the realisation of hope can seem impossible. I wrote a song recently about this tension. I can react pessimistically at times when others talk of hope. Living with ME brings a sense hopelessness, yet, somehow hope is infectious and there are moments when I can see a better future. I heard Jessica Bearman read a spoken word piece she had written and adding it to my song gave light to my darker questioning. In Jessica’s voice there’s a sense of gritty commitment to more than ME has to offer. You can watch a lyric video here

I was interested to know how others with chronic illness viewed hope. So I asked twitter. There were too many responses to include here but I appreciated reading all of them. One person was driven by hope to establish an ME research project, another said it was advocates who kept them hopeful. Many people said that hope was the only thing that keeps them going. Others said that they couldn’t hope but focused more on the things they could control on a micro level. Some took a meditative approach to hope, finding joy in the mundane. Others saw hope in the small achievable things, hoping to achieve just 5% more. Maybe this is where we can combine the realism with hope, in the small things, such as one person who said that often their own hope could only stretch to the PEM not lasting long. 

Maybe we hope because the present reality is too much to bear. Maybe we don’t hope because the effort to think of the possibilities is too painful. I think, ultimately hope can only be defined by each of us. If I can’t hope, I still hope to have hope. 

Madeleine wrote on twitter “Hope is a blackbird that comes to sing on your window sill when you’re bedbound and terrified” 

Hope is a blackbird. Hope is the flock of wild geese I included in my lyric video. Because one day I like to think I’ll fly again. Tomorrow I may not feel the same, coated in despair. But that’s ok. It’s still part of the story. Frodo Baggins made it in the end. We’re only just leaving the shire. 

In Jessica’s spoken word piece, she talks about nuggets of hope. Sometimes nuggets are all we have. Sometimes that’s enough. 

Finally, one more from twitter… 

Hope is the silver thread stretching from the current inky darkness into the future, with potential for, rather than promise of, better times ahead. VMMorgan

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