When JJ received her Rett Syndrome diagnosis, I asked the therapist I was seeing what to expect in terms of grief. I wanted to have an idea of the timeline, to know how long each stage might last. She is one of those wonderful therapists who will actually answer questions and give specific advice, but what she said surprised me. “I think you’re going to be in the anger stage for quite a while,” she told me. “You might be stuck there for longer than you’d expect.” When I asked her why, she explained that without an endpoint, a finite loss to point to, anger tends to linger.
The more I thought about it, the more what she said made sense. No one in my life had died. There was no person to bury or mourn. There were only ideas, hopes, plans, and dreams to cry over. My daughter was still very much alive, needing me every day, depending on me for everything. This didn’t seem like it followed the normal course of grief. Because how are you supposed to find peace when suffering is ever present, right in front of you? How are you supposed to process the loss of invisible and intangible things?
When your child has special needs, there is rarely anyone to blame. Quite often, there is no one—unless you count God, the universe, fate, or whatever it is you happen to believe in. Yet, as humans, we need a direction for our anger. When in the throes of grief, even the most self-aware of us finds ourselves blaming someone, sometime.
When it comes down to it, there are many vectors for our anger. A doctor who gets a diagnosis wrong. A clinician who delivers news without empathy. A stranger who stares. A teacher who doesn’t understand their student’s needs. None of these people are at the root of your child’s struggles, and none of them are responsible for the failures of your child’s body, brain, or future. But it feels so good to direct our sense of injustice and impotence toward someone made of flesh and blood. Because we can’t argue with a strand of DNA. We can’t shake our fist at atrophying muscles or misfiring synapses or brittling bones. Most of us can’t battle fate or luck or the universe with any hope of winning.
And so we are stuck in a cycle of anger that does, in fact, last for quite a long time. Sometimes I don’t think we even get to choose who we are angry at. For me, it often takes the form of anyone and everyone around me. It’s all the well-meaning people going about their normal lives. The ones who have the luxury to complain about, care about, and worry about things that I don’t. The ones whose healthy children have healthy children’s problems. The ones who seem oblivious to their own good fortune and the precarious balance of their lives. I’m jealous of everything they have: sleep, energy, time, hope, and faith in the future.
I realize how unfair this is. Deep down, I know these people have their own problems and that those problems are real ones. And if these people haven’t yet had dark times, they will at some point. Everyone does. This thought doesn’t stop my anger, though, because what I’m truly jealous of is an absence of grief. These people aren’t grieving anything at that moment, and I am. Perhaps it’s as simple as that.
I’ve often thought it’s a sign of maturity when someone can be angry at a situation, rather than at a particular person. Up until now, I’ve been pretty good at it. But a situation of this magnitude—a disease that robs a toddler of her words, her hands, and her ability to walk on her own—is beyond anyone’s ability to remain level-headed. In my case, and perhaps in yours, the best we can hope for is to keep the anger from overwhelming us. It’s a battle, and one I lose on some days, but I always get up the next day, ready to try again.
When you google “anger,” you learn that it’s a secondary emotion. When we feel a primary emotion—like fear or sadness—it makes us feel deeply uncomfortable. And so we turn, instead, to anger. Because it’s more comfortable than vulnerability, powerlessness, or loss. It feels better than looking at a child’s struggles and not knowing how or what or why. Anger gives us a direction for our feelings.
Sometimes there’s no stemming the tide of our anger, no matter how much we want to, no matter how unhealthy we know it to be. When this happens, I think we just need to acknowledge it and to pull energy from it. But we should only do this in the moment and only with full awareness. When we let anger creep into our subconscious, day after day, or corrode the connections we’ve built up with others, then it’s time to do…something. I can’t tell you what, exactly. Talk to a professional? Take up kickboxing? Meet up with other parents? We’re all different, so we all have our own ways of coping.
For me, I run. Once my lungs are burning and sweat is trickling down my back, one of two things happens. Either the anger burns itself away, leaving me feeling clean and empty, or the sadness that was lurking there slowly creeps in. Many times, I’ve found myself near tears on a run.
Anger is often just grief’s mask, the thing that props us up so we can get through the day. It’s burning fire and currents of energy—so much lighter than the thing that lies beneath it. Grief is heavy and dark and pulls us down. We need to feel it, in the end, but we certainly weren’t built to bear its weight continuously.
So let yourself feel angry, if you’re angry. Let yourself grieve if you’re feeling dark. It’s all normal and very human. Run. Kick. Scream. Cry. Curse. Do any or all or none of these things if you need to. Just don’t let your anger become a weapon that breaks connections or hurts others. And most of all, don’t forget what my wise, experienced therapist told me at the end of our session: You might be in this stage for much longer than you’d want, but you won’t be there forever.
What makes you angry? How do you cope when you feel that way? Have your feelings of anger changed over time? Let me know in the comments below.