This is not necessarily about all we have experienced with Covid this last year, though with all the events of 2020, it is likely that more and more individuals will resonate with what it might mean to live with difficulty and pain in their life. It’s interesting when things outside our control teach us lessons we can’t help but pay attention to. No, this post is more about being a father of a son with Duchenne Muscular Dystrophy, something I haven’t written about in quite some time, likely out of self preservation and an attitude of push-on-through.

Life itself — and we know nothing else besides it — isn’t it horrific? but as soon as we admit its horror (not as an opponent, for how could we measure up to it? but somehow trusting that this very horror is entirely ours and merely at this moment still too great, too expansive, too ungraspable for our hearts which are still learning), as soon as we affirm life’s most frightening horror at the risk of dying (that is, of our excess!), we gain a hint of the greatest bliss that is ours at this price.

Rainer Maria Rilke – The Dark Interval

Life IS horror… AND life is bliss. I think we often times miss one, because we focus too heavily on the other. To deny the pain is to miss the opportunity to learn from it and to experience all that life has to offer. Rilke goes on to say that the person who has not “accepted with ultimate resolve even rejoiced in the horror of life… will have been neither one of the living nor one of the dead.” I see in myself the tendency to “stay positive” or “have hope” or “not give up,” and in this, I neglect to admit how difficult much of life really is.

I am led to believe, in fact I’ve seen it all to often, that staying positive is the norm in our Western American world. Perhaps for a number of reasons: we don’t want to be a downer; we don’t want to appear weak; we have been conditioned to handle our own problems; or frankly, if we consent to the pain and difficulty of life, it makes it too real, so real in fact that we doubt we could survive. But does our denial of the pain make it go away? Does our “positive” outlook and our stubborn resilience change what is happening both inside and outside us? I really don’t think so. In fact, any doctor or physical therapist would tell you that ignoring or pushing through the pain of an injury, wound, or infection is what can get you in the hospital or even die.

We have very little control of how life unfolds. The things that come our way, the people who come or who go, the weather, or even what emotions rise up in any given moment. We can be prepared and we can pay attention. And we can learn. Being honest about the pain AND the pleasure fosters in us a heart of compassion. The lenses with which we see the world can cause us to force others into our need for comfort and ease, or they can cause us to open with softness and compassion.

Most days, my lenses are clouded with pain. The ongoing aching in my back seems small compared to the fear that I won’t have the strength to lift my son off the floor or hold him up every time he has to use the bathroom. The countless deaths I have accompanied often seem normal when I watch the accelerated decline of my own child. Many days it feels like everything is being destroyed before my eyes: Brendan’s muscles getting weaker and weaker, causing his joints to shift and no longer support his body; the floorboards, corners, cupboards, door frames, and brand new appliances unable to hold their own as the 350 lb wheelchair navigates in our too small house; often even my ability to converse rage-free (let alone patiently) with Kat who bears the weight of caring for both boys day in and day out… destroyed. Seeing people recover and no longer need their mobility equipment leaves me in tears as I anticipate that our casting off of mobility equipment will mean Brendan has gotten worse.

It’s a difficult place to be in because it is not possible to ONLY see the pain and the difficulty. It’s there, always, but there has to be more. If we only focus on the pain, we will self destruct. If we only focus on the good, we will never grow. As Mary Oliver so beautifully has written, “Tell me about despair, your, and I will tell you mine./ Meanwhile, the world goes on.” (Wild Geese) We bear our suffering together and also look out at the world doing her thing. The spring still comes. Flowers emerge, babies are born, trees bud, smiles emerge behind masks. Birdsong, sunsets, a laugh, a deep unmasked breath of fresh air, a creek running through the snow covered wood. A hug long awaited for, warm fuzzy snuggles from our dog or cat, an amazing dinner or hot coffee in the morning (after our smell returns post-Covid).

It is not an either/or. We don’t choose to look for the good only, nor do we choose to only see the bad. All of this is Life, all of it a blessing and a gift for our opening, our learning, and our deepening. We must hold both the bliss AND the horror, celebrating them, wondering about them, and inviting them. Together, let us live fully for a more compassionate future.