“I don’t want my light to be dimmed,” my daughter sobbed through huge rolling tears and heaving chest.
I stopped dead. The words soaked in. My throat choked up.
She had dealt with a lot these last couple of weeks.
Somehow she went from 20/20 vision in December 2011 to little or no vision in her left eye. 20/20 to 20/WTF.
She’s only nine.
It doesn’t seem to matter how much I want to get to the bottom of why this has happened, and 3 different medical opinions have not helped other than vague… infection…. virus… scarring of retina….
It doesn’t seem to matter that I feel helpless to prevent her losing all her sight if I can’t understand how she lost sight in one eye. I can let the ‘why’ scream in my head all day, I can continue to advocate, research, ask questions of the medical experts who are taking care of her but it does not change the facts.
The fact that she has a scar on her retina causing her to lose her vision and it’s relegated to ‘just one of those things’.
So as my baby girl looks at me with her huge baby-blue, beautiful eyes, beseeching me not to wear her sunglasses to go to the store, the words “I don’t want my light to be dimmed” still swim around my mind.
With pupils the size of soup bowls, following dilation, she needed to wear eye protection, but something reached deep within me with her words.
“I don’t want my light to be dimmed.”
Yes, it was her distinct and powerful reaction to a request she didn’t want to follow, but it struck me as a core truth in life.
Who wants their light to be dimmed? In any area of life?
Who amongst us (and I have my hand up here too) recognizes dimming and is too stuck, struggling, or plain exhausted to figure out how to get their spark back? Anyone with their light under a bushel or so starved of fuel that it’s barely a spark? Or, is fear strangling any flame you have?
Are any of us immune to shitty circumstances? No. Would be nice.
But, as I could feel myself sitting in the passenger seat driven on a catastrophic road, with disaster and fear roughing up the ride, I realized this is a journey I’ve been on many times for myself and with my kids and I want to do it differently this time.
Yes I can be an advocate for my daughter. Yes, I can do whatever it takes to get the best care and outcome for her. But I can’t change the circumstance. And spinning in catastrophe was sapping the life out of me.
It’s been an emotional few days and I wanted to share some of the strategies and practices that are helping me in case you are also dealing with some light-dimming yourself:
1. Honor feelings – after I put the kids to bed, the first thing I did was reach for a large bag of chips. I wanted to eat my feelings rather than give space to the fear, panic, sadness and confusion slicing my throat and squeezing my neck. I’ve learned that you can stuff all the feelings you want, but it doesn’t help, and they don’t go away. Giving space to the feelings and allowing them to pass through you, with love and compassion, can lead to a more peaceful and chip-less existence. Tears allowed to flow can truly heal.
2. Breathe – another obvious – right? Have you ever noticed when you’re in catastrophe mode that your breathing is shallow and barely there? Taking time to really breathe into your abdomen and focus mindfully on your breath, even for a few breaths at a time can take you out of fight or flight and back into parasympathetic, or peaceful, mode.
3. Get the facts – fear can be immobilizing and can put you in a spin cycle where you are not able to access your brain’s executive functioning that is needed to deal with complex issues. Once you have taken the time to feel your feelings, and breathe, you will be more able to gather the facts – tapping resources and populating the full picture.
4. Ask questions – don’t be intimidated to ask the difficult questions – to medical professionals and of yourself. There are no stupid questions.
5. Look after yourself – it sounds basic and obvious, but at times when you are mentally and emotionally challenged, self-care can go by the wayside. Listen to your body and honor your instincts. If you’re tired, sleep. If you’re rested try and get out in nature or move your body, fuel it with fuel and don’t forget to water it. Write if it helps. Meditation helps (even as little as 5-10 mins a day). Walking with friends has been a saving grace.
6. Stay on your yoga mat – Sophie’s daily drama about wearing the eye patch as she adjusts is quite spectacular. Her tears literally flood the patch causing a minor dam bust as it collapses off her face from the immense pressure of salty water behind it. If I can be a calm, loving and compassionate presence while she cries and not get pulled into the ‘crappyness’ and ‘not fairness’ and ‘this sucks-ness’ of the whole situation, I can provide a safe haven for her not a screaming banshee partner. Easier said than done, and so worth practicing.
7. Lean: Lean on your friends and family, allow yourself to express your emotions with trusted loved ones and friends or professionals (therapist, coach, medical professional) in a safe setting.
8. Identify the gifts: I’m not trying to be glib here, but looking for the gifts in any situation is time well spent, no matter how dire you feel it is. For example, in my current situation malignancy was ruled out. She has one eye that sees.
9. Gratitude – throwing in a medical challenge in the sometimes harried rush of multiple spring sports schedules, homework, food shopping and preparation, mothering, wife-ing (is this a verb??), laundry, running a business, I had temporarily overlooked the multitude of gifts residing in the ordinary. Warm showers, roof over head, loved ones close, smell of fresh-cut grass, eyes that see.
Without gratitude, my light can be dimmed.
The shade on my eyes filtering out all the goodness that surround me in the most ordinary, yet beautiful and meaningful times.
In the present.
If you find your light dimming – what strategies do you use to bring yourself back to your birth-right brightness?