Embracing Disability: A Remarkable Opportunity for Awakening
“My days are filled with the heartbreak and exhaustion one would expect from the experience of slowly losing a child, but they are also infused with wonder, gratitude and beauty.”
As the mother of a terminally-ill teenage boy, I’ve the last six years as a round-the-clock caregiver, grieving mother, meditation student and leader of a support group for families worldwide who have disabled children. My days are filled with the heartbreak and exhaustion one would expect from the experience of slowly losing a child, but they are also infused with wonder, gratitude and beauty. It’s impossible to have an experience like this without waking up to a whole new way of understanding life, death and disability. Among other things, it asks the question: “are the disabled and their caregivers merely ill-fated victims of circumstance, or is their path a far more noble one, an opportunity to learn — and to teach — acceptance, peace and unconditional love?”
Although my son Danny is the inspiration for this article, he is not the subject. The subject is the process of learning to be with pain and to rejoice in its remarkable revelations and unexpected lessons. But obviously some background is necessary, so briefly, Danny began showing an array of baffling physical and cognitive symptoms at the age of eight. Prior to that he was a perfectly normal kid who loved to ride bikes, swim and ski. At age 10 he was diagnosed with a rare, incurable disorder called Metachromatic Leukodystrophy (MLD), a progressively degenerative disease that would slowly cause him to lose all of his physical abilities, ultimately leading to death after 5- 10 years. We are now at the six-year mark, and he’s in a wheelchair, requiring total care with feeding, dressing, bathing and positioning. He can no longer talk, and he’s been incontinent since he was nine. We have chosen not to follow an aggressive life-extension course, and we expect he’ll live perhaps another year.
Your response to this is no doubt to feel unimaginable sadness and great compassion. You’re probably thinking, “it’s tragic, it’s unthinkably horrible. It’s annihilating. It’s unfair.” And yes, all of the above is true. But that’s not the only truth. There is another level to this, a level at which this experience is a miracle, a gift, and the chance to receive an honorary doctorate in Advanced Awakening.
A few years ago I organized a fundraiser for a nonprofit group that helps children with special needs. The founder of the group was one of my closest friends, and she and I had recently developed a penchant for skydiving, so we cooked up an idea to do a skydiving fundraiser. In all the media interviews we did, we were always asked, “why skydiving?” And our stock answer was, “compared to raising a child with a disability, jumping out of an airplane is easy. Our worst fears have already come true. Anything after that is a piece of cake.”
So if there’s nothing to fear, then what does that leave us with? Acceptance of what is, and free choice as to how we want to experience it. Imagine going through life as if the worst possible things have already happened and there’s nothing left to dread. Or better yet, imagine believing that there are no good or bad experiences, no good or bad people, no good, no bad, period. Everything that happens just happens. There are no values on any of it. Every action is part of a whole series of related actions, all for a purpose, a million purposes, filled with growth lessons and possibilities for expanding our views and shedding our limitations, and little by little growing toward a state of gentle acceptance, peace and recognition that these experiences are gifts to teach us how to live in a state of LOVE.
LEANING IN TO PAIN
My spiritual outlook is in essence, Buddhist, and I’m going to quote from one of my favorite Buddhist teachers, Pema Chodron. All of her teachings are amazing, but four of her points speak so clearly that I quote them frequently and have them taped to the wall above my desk. These points perfectly describe an enlightened view of tragedy and loss and give guidelines for making the most of our experience here on earth:
1. We use our painful situations to wake us rather than put us to sleep.
This means that we can choose to become angry and bitter, to shut people out, to feel victimized and to live a disconnected life ruled by fear. That would be sleep. Or we could learn how to notice all the miraculous events that occur around the edges of any painful experience, and realize that these events are roadmaps leading us to new possibilities. Taking it one step further, it is, in fact, our own intention, our own higher selves or souls or god whatever you choose to call it, that brought forth the painful situation and created its gifts in the first place.
2. We invite in what we would usually try to avoid
When intense pain happens, we instinctively recoil from it, saying, ‘please make this go away, I’m not ready for this, I don’t want this.” What if instead of resisting, we could say instead, “OK, I will receive this. What’s in this that I need to know? Let it come, I will accept, and I will follow this path with curiosity and gratitude ”
3. We realize that only to the extent to which we expose ourselves to annihilation, can that which is indestructible be found in us.
The more vulnerable we are, the more we are willing to risk, the more information and guidance we will receive and the faster change and expansion will come.
4. We learn that bad news, pain, fear, loss and tragedy are actually very clear moments that teach us to lean in and feel rather than to back away from feeling and experiencing.
And in that sense, tragedy can be seen as good news, not bad. Lean in. What a beautiful expression! To lean in to pain rather than to pull away from it looks like this… You’re diagnosed with cancer, your teenage son is a drug addict, you’ve lost all your money in the stock market and you lose your job. No matter what you do, you cannot control these circumstances, at least not in the immediate future. Do you kick and scream and resist and fight and rage and vent and blame? Sure you do. For a few days. And then you wake up and deal with it.
You lean into it and ask it to engulf you. You receive it in all its entirety. And you find that it leads you to a whole set of amazing possibilities, things you might have never imagined. Even the worst imaginable scenario … your son the drug addict dies of an overdose, or my son, my only child, gets diagnosed with a degenerative illness and won’t live past the age of 15. Even that, you lean in to, and you ultimately are lead to that place of fearlessness, because the worst imaginable thing has already happened.
There is no bad news. There are no tragedies. Change always leads to the next step.
These gifts of perception are ENORMOUS once you learn how to view things this way. And why not view it this way? By contrast, what would the alternative feel like? It would feel like helplessness, powerlessness and victimization..
My son is my greatest gift and the most important teacher I’ve ever had. From him I’ve learned how to love in a way that most parents will never experience. I don’t care about his achievements or his social status or his future endeavors. There will be no future endeavors, at least not in the physical world, so what I’m left with is a relationship with another entity who is totally in the present. What an honor! I am not the parent, he is not the child. We are two beings incarnated on earth together and we are on a path. Identities, such as mother or son don’t matter.
With Danny’s help, I’ve learned to live fearlessly in the present, despite all the reasons I might have to be fearful. As Pema says, “once we become intimate with fear, nothing can really hurt us. We walk right into the face of it, and it can’t do anything to us.”
As a caregiver, I’ve received my son an opportunity to live purely on a soul level with another human being, without conflict and without expectation. And ultimately, he is teaching me how to love that deeply and then to let go, knowing that the connection does not ever end, it only changes form.
My wish for all other caregivers — and for all of us, in any situation — is that these experiences can be recognized for the value of the journey, without judgment, and without fear, and without seeing ourselves as powerless puppets being manipulated by a judgmental god, with no value or purpose, explanation or reward for our suffering. It’s all quite miraculous really, this life on earth, and when we see how much there is to be grateful for, the so-called good with the so-called bad, all of it, we learn the true meaning of forgiveness, grace, and unconditional love.