HOPE REIMAGINED
Hope is in the liminal space between regretting the past and fearing the future. Hope is alive in what is still good.
When we meet people facing adversity yet finding ways to be joyful and resilient, they show us what hope looks like. It’s more than wishing really, really hard for a specific outcome. Hope is a place between what could be, if . . . and what is. Hope is in the liminal space between regretting the past and fearing the future. Hope is alive in what is still good. It is knowing that our trials, while difficult and sometimes heartbreaking, aren’t the sum of everything. Envisioning our pain in the context of the long arc of time and realizing that it's seated next to joy gives us hope, even if our wishes don’t come true. Living with reverence for the now allows the future to unfold rather than loom on the horizon and the past to reveal what matters most to us. We have to quiet our rational minds and our need for fairness to let hope in. Our intellect allows us to understand our diseases and comply with our doctors’ plan of care, but hope is the leavening agent deep within us that permeates our beings and allows us to live rather than merely exist. It is the antidote to suffering. Suffering comes if we grasp at what could have been if we weren’t sick or dread what is to come. Those outside the chronically ill club might see this as irrational in our data-driven world that demands resolutions, but for me, it’s the only way to live beyond simply existing.
Comparative suffering, or It could be worse thinking, makes hope slippery and elusive. If we rank order our circumstances and see our feelings as unworthy because we don’t have it as bad as someone else, we don’t allow surrender, weeping, or acknowledgment of loss. The unsettling thing is that human life is fragile. It takes courage to say the quiet part out loud or even whisper it to ourselves, but chronic illness shouts it at us with a bullhorn. Most of us will do anything to deny or ignore our human fragility. It’s disorienting and leaves us wondering how to hope. Often, instead of facing our pain, we build brilliantly engineered skyscrapers of rationalization to distance ourselves from our suffering. Diminishing our pain based on someone else’s, denies the vulnerability we all share and prevents us from accepting ourselves as we are in whatever state we are in.
The pressure to stay positive and not acknowledge negative emotions looms large in the Western psyche. Qualifying our suffering assumes that our pain exists in a vacuum and everything else is equal. It dismisses the unique experiences and emotions of individuals and doesn’t make pain less real or valid. Each person’s coping ability is relative to their own experiences and circumstances. When we allow ourselves to surrender to our heartbreak and negative emotions, we feel the ache in our whole blessed bodies – the very bodies that are causing the upheaval. Our stomachs burn with acid, our hearts pound, and when we weep, our eyes get swollen and our noses run. When we cry, our bodies help our hearts soften, and we temporarily stop striving for control. This softening of our hearts allows us to reorient our brains away from their protective modes and move from despair to hope. Riding the wave of our emotions temporarily bypasses our intellectual defense systems and allows us to use our emotions to help us find a way forward. Psychologist Susan David, professor, speaker, and author of Emotional Agility, encourages people to view emotions as data, not directives. Our emotions guide us to understand what we hold dear and can help us find a way to embrace those things despite our circumstances.
The kind of circle of support we chose to build is essential. Having a tribe of illness warriors helps us know we are not alone. Chronic illness often makes us feel isolated. We have to find ways to reconnect to the wider world. Support groups can help us feel understood and connected. Group members provide solace in ways others can’t. We don’t have to fill in the back story and hope they get it. They understand our fear of disease progression, the financial burden, the effects of our illness on those we love, overworked and dismissive doctors, the frustrating healthcare bureaucracy, and the grief of losing the life we thought we’d live. We can be open and honest about our feelings and explore the implications of chronic illness in a supportive environment without the well-meaning platitudes offered by the chronically well. Sharing our struggles and listening to the stories of those dealing with similar problems helps us gain perspective and realize that we are not the only ones coping with illness and all that comes with it. Support groups allow us to feel accepted and build a sense of community and belonging.
If we’re not careful, support groups can become islands of exile if they are our only source of social interaction. We might feel safe sharing our stories with those who “get it,” but we remain cut off from society. We have to guard against contagious despair and a culture of illness if groups don’t have a focus otherwise. Giving voice to our negative emotions is not the same as despair. Despair is the certainty that life is futile and the good things are merely counterfeit gemstones. If our interactions and relationships shape us, we must expand our reach beyond the safe place of our support groups. Relationships show us that we are not the only ones facing adversity and experiencing joy. We need to have people in our lives who let us know that hope still exists even if we don’t have it at that moment, and we can do the same for them. None of us escape the pain of life. If we don’t have meaningful interactions and interests outside of the group, we risk losing perspective and becoming refugees in search of a home. I can grow toward your light, and you can grow toward mine. It’s easy to get bogged down in the minutia of our illnesses and forget that the reason we want support is so we can LIVE, really LIVE!
