Buried Alive

Feelings buried alive never die.

Powerful line, no? It’s the title of a book that talks about the impact of unresolved emotions and feelings on our happiness, health, and well-being.

You know what I mean, don’t you?

We all have them. Those angry and sad feelings that keep you awake at night, tormenting you with questions that don’t have answers. Why do I have such a child? Why doesn’t his therapy work when I paid so much for it and am working so hard every day to do his exercises with him? Why do I feel judged by others, sensitive to every nuance of their questions and comments (and often dumb advice)? Why can’t I have a normal life like everybody else?

It’s those of emotions of stigmatizing hurt,  pain, frustration, and shame that feel like knives twisting inside of you. How others treat you when you walk on the street with your child that won’t—that can’t—behave like normal kids do (whatever normal means). It’s  the comments people make, it’s the insensitivity of the neighbor who never shovels his sidewalk wide enough to allow for a wheelchair to pass through, it’s the self-consciousness when other people stare, the agony deliberating each time of braving the streets by taking your child. It’s the tears of being bound by your child, limited in your freedom of what you can or cannot do.

It’s the crippling emotion of blame. “I must have done something wrong for Hashem to have punished me in this way”; the paralyzing emotion of guilt for even feeling you want something different, something more, for feeling you are really no more deservant of this than you next-door-neighbor who is a much worse person than you are. And feeling again the blame of having done something heinous, of being someone heinous, who deserved this punishment somehow. Even if for those horrible thoughts about the neighbor; you horrible thoughts about your own child that you love so fiercely that your resentment and fury often reduces you to a guilt-ridden monstrous mess you barely recognize.

And these emotions frighten you so much in their intensity, making you believe that there is something seriously wrong with you if you can feel them, if you can be them, that you bury them. Because when they are buried, you can care for your child without wishing that he was different and your life was different; without the yearning for that difference that makes you feel envious of others and often angry.

Not fun.

There’s this woman, Elisabeth Kubler-Ross, who did lots of work with loss. She specifically worked with terminally ill people, and in her work she identified five steps to dealing with one’s ultimate loss, that of life. Her work was so profound, so monumental, that it has been adapted to help anyone coping with loss. Not only the loss of one’s own life, but the life of a loved one. This expanded to truly any loss. Of a career, of a home, of a marriage, of a cherished object, of a limb, of a dream.

Your loss, that of your dreams of having a healthy child, is compounded by the many losses the loss of that dream brings with it. The loss of normal Shabbos meal, the loss of an excursion to the park, the loss of free time, the loss of sleep, the loss of grandchildren from that child, the loss of milestones, the loss of Self you had before this dream was shattered. Even the loss of the marriage you once had, or once desired that no longer can exist within your present reality.

What are these five stages of coping with loss?

First there is denial. No. I don’t  believe it. My child is perfectly normal. And even if he is not, he will be. There’s nothing wrong with him that some therapy can’t heal. Look, don’t you see? He is normal.

Then there is anger. It’s not fair! Why me? Why am I being punished? What did I do to deserve this? How dare Hashem do this to me!

Bargaining follows soon after. Please Hashem, make a miracle and let it be a mistake. I  promise to be a better mother. I promise never to yell at my other children. I will be calmer, more patient, a better Jew. I will take on chumros in tznius, hilchos Shabbos, lashon hora. Please Hashem, let’s make a deal!

And then depression. I can’t. I’m exhausted. Leave me alone. I don’t want to nurse him. I don’t want to toilet train him. I can’t. I can’t. I can’t. My brain is foggy. I can’t think straight. I feel like I am fumbling around in the darkness and I cannot see any light. Leave me alone.

We cycle in and out of these stages, in and out, in and out, in and out.

The final stage is acceptance.

I accept this loss, Hashem, and I can move on. I can live with this loss, I can even live with the million losses that come along with this consuming loss. And maybe one day I can even smile. Laugh. Love. Talk to friends. Bake with children. Spend the day in Manhattan without guilt.

And some days denial kicks in, and another day depression. Another hour you are bargaining with Hashem, another day you are too exhausted to crawl out of bed. And some days, the acceptance feels possible, and the sun comes in through your windows. Even the windows of your soul.

The most important thing is to allow the rainbow of emotions to take their places in your healing. There is no way acceptance can enter if it is not preceded by anger. And within anger is hurt, guilt, blame, shame, sadness, despair, and anguish. It is only when we allow the complete range of our emotions in response to a loss then we can also experience the complete range of positive emotions that challenge and overcoming adversity can bring in its healing vortex. Love, sensitivity compassion, goodness, selflessness, warmth, joy, appreciation, and gratitude. Yes, gratitude.

The key is radical acceptance. Not merely acceptance.

Radical acceptance is about life on life’s terms and not fighting what you cannot change. The daughter’s diagnosis. Her limitations. It’s  as if, when we refuse to accept the truth of what is, then we can keep it from being true, then we can absolve ourselves of the actions we must take, or of the actions that we cannot take if it is true.

It is exhausting to fight reality. Rather use that radical acceptance to accept what is and fight the limitations of the illness instead to bring the most quality of life possible within the limitations of the diagnosis.

Pain is reality, suffering is refusing to accept reality. Pain is the loss, suffering is the refusal to accept the loss. And one of the ways we must practice acceptance is to allow for the emotions that loss brings. Attempting to avoid painful emotions creates more suffering. Radical acceptance allows for both those painful emotions, reality, and healing.

Not always can we solve the pain. Take it away, make it that it never happened. But we can always change our perceptions.

Try this most simplest method to begin achieving radical  acceptance. Notice the powerful emotion of shame or anger or guilt. Notice where in the body you are feeling the physical sensation of your emotion. Simply allow yourself to feel that physical sensation. Notice the thoughts that come up when you focus. Thoughts like, “It’s not fair,” or “I can’t do this anymore.” And notice your ability to tolerate the sensation. Notice the sensations easing up with your focusing. Find a statement that works for you. Like, “It is what it is.” or, “One day at a time,” or even, “At least I have my other children/husband/mother/money/good cleaning help/big house/garden/hobby/whatever.”

That is the beginning. Simply noticing and focusing.

Deactivating the arousal that comes along with these emotions is the next step. Make a list of resources. Resources are anything that calms your nervous system. A hot bath. A run in the park. Sitting on your couch and reading. Baking. Listening to music. Journaling. Sometimes, it’s simply not possible to use these resources in the present moment. Not when several children need our attention at once, when supper needs to be made. And then, visualization can work. Breathe in the smell of shampoo of your daughter’s hair. In your mind. Bake and smell the aroma of hot fresh challah. In your mind. Even imagine the beach, the sand between your toes, the sun on your skin, the waves crashing in your mind.

Find a support group of mothers like you. Laugh together. Cry together. Only they can understand like no one else can. And not judge, or give advice you never asked for. Maybe seek out therapy. Find someone you can trust. And talk so that the mountains of unspoken words don’t suffocate you.

Feelings buried alive never die. Sometimes they kill.

Let them breathe. And then so can you.

Originally published by Sparks, a division of Rayim; an organization supporting parents of special needs children