Theory will never impact you the way experience does. Mindfulness works because it deals with what’s actually happening, not with ideas about how things are or should be. Putting this into action on a cushion is what I call practice. The next step is to bring it into everyday life, and that’s where mindfulness becomes a reality.
For example, as soon as I woke up this morning I saw Caroline was having a hard time.
“Vertigo,” she said. She hates vertigo. Can’t walk, can’t sit up in bed, can’t stand the light. Can’t work. The first MS attack I saw her go through was vertigo: ten days of it. That’s when I found out that physical symptoms are only half of the MS story. You never know how long they’ll last. A day, a week…might be for good. It’s horrible, but it keeps you focused.
“Damn!”
I heard it in her voice, the sense of the unknown. Now what? How long?
ethics that don’t translate into behavior are worthless
Since I’ve been with her I’ve faced stuff I’d probably have avoided if I’d had the choice. For one, I never paid attention to the way I — like most healthy people — regarded chronically ill people. Those who meet Caroline for the first time often say, “Oh, I knew someone with MS,” On two occasions they’ve blundered on, “Yeah…she died!” They even laughed, or tried to.
They weren’t malicious, just scared stupid. Fear shuts down sensitivity, and civility goes out the window.
Caroline and I saw this big time when we visited the Boston Aquarium and she decided to use a wheelchair. Discomforted by the sight of an invalid, just about everyone avoided eye contact and pointed their backsides in her face.
I try to understand behaviour like this by looking into myself. On the surface we’re different, but underneath we’re all guided by the same primal drives. I had to admit, I too had been insensitive in similar situations, instinctively turning away from someone in a wheelchair. Why? Guilt, discomfort — or, if I was truly honest with myself, horror. Weakness and disease await us all; it’s just a matter of time. Some instinct tells us we’re better off ignoring this truth. Watch out for instincts.
if life weren’t such a bitch we wouldn’t
spend it trying to justify our existence
Facing the ugly stuff may not be pleasant, but nothing is more liberating. If my self-image as a philosophically compassionate and caring man involves denial of my insensitivity, what use is it? Ethics that don’t translate into behaviour are worthless.
Now when I see someone in a wheelchair, I make eye contact; I smile. I’ve developed an inner eye for that ugly side: the denial reflex. I know myself better now; when I’m not who I want to be, or think I should be, I face it.
Living with Caroline has honed my listening skills. It’s taught me that helping out is an art: it takes practice. It’s much easier to take over, and much less compassionate.
Life is a paradox, sometimes a bitch. If it weren’t, we wouldn’t spend it trying to justify our existence. Our only option is to approach it as a moving target. Who knows what’ll happen tomorrow; or even if we’ll make it that far?
mindfulness is not just
to feel calm and collected
The healthy forget; at least, they try. For Caroline that’s not a choice. I don’t carry her burden, but I do share her sense of the precarious. Living with her is a slow-burning emotional explosion. In facing each day head-on, I’ve tuned into her courage. I see the depth this brings to her work as a life coach.
I sometimes imagine all the fun we’d have if she didn’t have MS. Then I wonder again: what would happen to that special intimacy. It’s deeper than love.
We hope and dream, but fantasies are futile. There’s no cure for MS, not even close. Caroline gets emails from well-wishers all the time offering a ‘new cure.’ She tells them that nobody knows more about their own disease than MS sufferers. It’s a long, slow burn and there’s plenty of time to ponder. Attempts to fix MS may or may not work, but close attention to the present moment, especially to your reactivity, can free you from fantasies and unrealistic expectations. There’s no need to compound the suffering. Anxiety is — of all things — a comfort zone.
This moment is all we have. We too quickly forget that simple truth, though we can scarcely afford to. This is what mindfulness is for: not just to feel calm and collected but to face what we’re trying to avoid.
This one of your more excellent articles. I completely understand about careless, fearful comments. When I called my other doctor’s office to inform them I’d been diagnosed with Stage 3 Colon Cancer, the well meaning receptionist responded, “I’m so sorry. It was nice knowing you.” … She immediately apologized. I saved her from her spoken horror by saying I understood. Relief all around.
When I was growing up, all children I knew were taught that it’s good manners not to look at someone in a wheelchair … so “they” don’t feel uncomfortable! My stepfather was a paraplegic and wheelchair bound. I learned quickly, as you have … engage their eyes and smile. Show that you see them.
I send you and your Caroline all my best hopes and wishes. The cancer, for me, is gone. I remain hopeful that a cure for MS, and all neurological diseases, can be cured. Things can change in an instant. May it be so for Caroline and countless others.
I see you both. Sending a smile. Thanks for the great article which I WILL be sharing as a teaching for my meditation group. If we must go through these things, may they count as some kind of learning blessing for others.
Hi Tanya: I’m glad you made it through the cancer. Pretty scary, but at least you had something to be afraid of. Being too scared to look at someone who’s suffering is the worst of all possible disabilities.
Hi Stephen,
Thank you for the thought provoking article. Even though I have often indulged in it myself, I have always found denial to be suffocating. I work daily to “face the ugly stuff” and yes, it is liberating in both thought and action.
I think there is still a social stigma attached to physical and mental disabilities. But that too is changing. One can develop a skill for looking into the eyes and the heart of someone regardless of any physical attribute and smiling.
I wish you and Caroline the best and hope that she is feeling better soon.
Anne
Hi Anne: The social stigma is being gradually addressed by social activism and legislation, but the animal instinct remains. I’m trying to understand and accept that side of myself without being led by it.
Hi Stephen,
Caroline and you are very courageous. I find you an inspiration. Your posts are often grounding and reframing.
May you two prosper. E
Trust me Eckart, we are prospering. Notwithstanding the challenges we face, our home is filled with love, laughter and insight. Will it last forever? Of course not; but what does?
Stephen, found your site after listening to a Secular Buddhist podcast. Sounds like you are living great moments. Reminds me of hearing a parent of a disabled children explain that for their children they would like them to not have the disability but for themselves they now want a disabled child.
I’ll have a crack at your questions. Every action you make will ripple out through the world. So we could consider the effects of your current situation to continue forever. Obviously your current situation will not last forever but the effects will ripple through other people and future generations. So I’ll answer: No. Your actions.
Regards,
Mark