Learning to Breathe Again

I have a problem. I don’t remember the final moments of my life before I became a caregiver.

Most importantly, I don’t remember much about a day that changed my life. A day that changed my family’s life.

I don’t remember if it was a Wednesday. I can’t tell you if it was cloudy, or snowing, or if I almost threw up the avocado toast I had that morning.

I do remember the sudden feeling of chaos. The panic that gripped me and doubled me over in pain. I remember every moment of the day felt suffocating.

When I look back to when I first became a caregiver, the scenes I play in my head are blurry, like trying to watch TV through a foggy window. I do remember feeling trapped and paralyzed in the oncologist’s office, not hearing anything that was said. It was like watching myself from the outside and wanting to scream at the movie unfolding, “Get out of there! Danger is coming!”

But the scenes of my life before caregiving are so vivid. They include slow afternoons at the playground with my daughter after school. Going on spontaneous adventures with my husband. Feelings of safety and freedom. It was easy to breathe then, easy to love. Easy to be in the moment and enjoy time with my family and friends.

A lot of us lose friends when we become caregivers. I managed to gain new ones: the judgy, drama creating kind.

The first friend I made was Fear.

Fear made me drop the phone when I heard my husband say, “I have cancer”. It told me there was no need to reply to my friend’s texts. And to not even think about scheduling playdates, going for short walks, or even taking showers. Fear plugged my ears so I couldn’t hear the sound of my friend’s voices, the songs of the birds chirping, or the whisper of my own intuition, which had suddenly faded away.

Fear also made me hug my husband a little tighter, kiss my daughter more times than ever, and then it would grab my hand and force me to start writing a plan for not if, but when he would be gone forever.

When Fear realized it had done all it could, it introduced me to my second new friend, Anger. Anger was devious and hard to control. And even though I had met Anger before, we had never gotten this close.

Anger slapped me in the face anytime I tried to be nice. It patted me on the back when I yelled at my daughter for making small mistakes. When anyone offered words of advice, Anger reminded me that nobody could possibly understand me, because nobody was in my exact place. Anger would reach into my body, twist my stomach, stomp my legs, and squeeze my heart to make sure everyone around me would feel angry too.

A few months into caregiving, I met friend number three. A friend I wasn’t used to seeing, Worry. Let me tell you, she was a witch.

Worry made me check in with my husband 10 minutes after he left the house to make sure he was ok. Worry held my breath anytime he told me he was in pain. Worry mapped out all the best routes to every ER, just in case. And at night, Worry would kick my leg against his to make sure I could still hear him breathe.

My friends got organized and began to work together the day I had to schedule a full-body MRI for my husband. My husband’s life, our lives were being threatened by this intruder we just couldn’t get rid of. I was hyper-focused on doing everything I could to keep my husband safe. But it was clear no one shared my sense of urgency when I was told he would have to wait 4 months for that scan.

Fear, Anger, and Worry got excited! This was their time to shine! Fear made me sure my husband would die if he didn’t get that scan earlier. Worry worked its way down into my stomach and made me feel sick, unable to eat, unable to breathe. Anger made me call into the hospital every single morning at 8 am to see if there were any cancellations. On the fifth day of my calling, the nurse paused when she realized it was me and said, “Congratulations, we can get him in earlier.”

Small victories were never satisfying enough. By then, when people would ask, “How’s your husband?” I’d dread the follow-up question (if they thought to ask) “And how are you?” Resisting the urge to say I’m ok. Unable to tell them how lonely I was. Fearful that I’d break down into so many pieces in front of them that no one could put me back together again.

I couldn’t continue to live this way. So one day I wrote a message to my doctor. With tears in my eyes, I told her about my husband’s cancer diagnosis and how I cried a lot, but I didn’t tell her much about Fear, Anger, or Worry.

When I received her reply, I quickly scanned her words. I saw things like “cancer is a life-changing disease” and “taking care of myself is important”. I held my breath for her phenomenal conclusion, but all she wrote in the end was.

You should try Meditating!

I was pissed!

I wasn’t angry because I thought this was dumb or useless. I wasn’t even angry at her audacity to simplify my very complex problem into a one-word solution. I was angry because this is exactly what I’d been teaching for years.

When my husband was diagnosed, I had already been a yoga and meditation teacher for years. This is literally the advice I gave people for their own care practice. In fact, I had to run off to teach a meditation class right after reading this message.

Anger and I had a mini temper tantrum as I stomped to my car to teach a group of people how to find their inner calm. On the way to class, Worry whispered in my ear, “You’re a fraud”. Fear yelled, “They’re going to find out!”

I kept teaching people how to find peace, yet I refused to listen to my own advice. Until one day, a student that I hadn’t seen in a while walked up to me after a class, tears in their eyes, and said, “I’ve known I needed this, but for some reason, I wouldn’t allow myself to come to class. My partner has been sick, and I couldn’t justify taking some time away. Today I needed a break, so I came back. I don’t know why I stopped coming when I needed it the most.”

I looked at them and I responded. “Caregiving knocks you on your ass. Going into survival mode is what we do. Don’t judge yourself for it, but celebrate the fact you made it here today.”

We gave each other a big hug, and I walked to my car, got in, and cried.

This time, it wasn’t Worry who made me cry. I cried because, in comforting my student, I began to forgive myself, and for the first time, fear, anger, and worry started to disappear. I began to release the shame I felt for not doing the things I was teaching other people to do.

I accepted my brokenness.

I gave myself permission to pause and become reacquainted with a friend I pushed away the day I became a caregiver, Breath.

Breath held me when I felt fear. It filled me with hope on days when Worry had taken over. Breath showed me that it was ok to make mistakes when Anger was quick to judge. And today, it still opens my eyes to see through the sadness and overwhelm of my world to enjoy the good that surrounds me.

Breath gives me the ability to hear the beauty of my daughter humming. It allows me to connect with my husband while breathing in synch during a long hug. Breath finds me on sleepless nights and helps me find the rest I need.

Breath reminds me to be compassionate to myself. When the other three friends I made want to take up more space, Breath allows me to see them and learn from what they’re trying to tell me.

For over a decade of being a caregiver, I’ve learned that my story will be filled with struggle. I’ve realized that being gentle with myself, advocating for my needs just as strongly as my husband’s, and cultivating my friendship with my breath is what allows me to enjoy life in spite of having cancer in the house.

I’ve learned that, as difficult as it may be some days, I deserve to enjoy my caregiving life.