Life has been painful, of late.
Circumstances have brought a profound awareness of my limitations. The ongoing serious illness of someone I love. The approaching first anniversary of my father’s death; the fact that I was too ill to visit the intensive care unit where he spent the final month of his life.
After thirty years, I thought there were few ways left for my illness to hurt me. Now I know the pain of enforced absence during a loved one’s suffering. No other illness-related loss has cut quite as deeply as this, I think. It can be hard to maintain my own sense of worth when reminded of my inability to convert love into physical presence and practical assistance.
At times of additional emotional strain, such as this, the usual day to day limitations become harder to bear. My complete dependence on others; the lack of even basic freedom; the need to spend hours lying in darkness just to maintain a small level of functioning: suddenly I feel the true strain of all these restrictions. It amazes me how I can flip from a state where my illness is bearable, to one where its weight chokes me afresh. Or perhaps my amazement should be reserved for the fact that it ever feels bearable at all.
I fear that in crumbling, I am failing. That in allowing myself to grieve, I am somehow taking a step backwards.
The greatest challenge at times like this is how to deal with emotional pain when severely incapacitated. For the healthy world, distraction and activity are the coping mechanisms of choice. For those of us denied any such luxury, strong emotions take on a whole extra dimension. There is no opportunity for escape or for real release: the pain must be stared in the face and felt in full.
At times of deep distress, I have an abiding sense that I ought to be able to wrestle my pain to the ground and bring it under control. I respond to others’ suffering with patience and compassion, yet struggle to extend the same kindness to myself.
I fear that in crumbling, I am failing. That in allowing myself to grieve, I am somehow taking a step backwards. Anxiety tells me that I am not appreciating the good in my life, and that it will therefore be taken away from me. (By what cruel twist of logic is gratitude the only acceptable response to lifelong, severe illness?) My instinct is to want to put everything back in order as quickly as possible; to tidy up the emotional chaos and return to a calmer, more buoyant me. The more I struggle to do it, the worse I feel about myself.
These times of grieving are not, in fact, a disruption in my ability to cope: they are instead a vital part of it.
But this week, on a particularly tough day, I reached a new understanding. These times of grieving are not, in fact, a disruption in my ability to cope: they are instead a vital part of it. The release of emotion through mourning is what allows space for my strength to grow. When I fight my need to grieve, I create tension and a great sense of failure. In allowing it to be, I acknowledge that I am only human, and give myself room to heal.
I could have written this as a piece on managing emotion, complete with tips on boosting mood and suggestions of ways to feel more positive. Instead it seemed important to approach it from a different angle. To say to myself, and to anyone struggling similarly, that sometimes it’s ok not to be ok. There are times when the pain, like an unwelcome guest, cannot be forced to leave and must instead, for a time, simply be lived with.
Although I tend to see my illness grief as a negative force to be banished, in reality it is an important part of my true self. My tears and anger represent my belief that there can and should be more than this. Acceptance and optimism have their place, but so too do rage and a refusal to accept. At the core of my anguish lies not defeat but my fight itself. My grief is my scream at the world; my rejection of my suffering; and a promise to myself that my spirit will not be broken.
Image: Fabrice Villard on Unsplash