Harder To Look Away

Sometimes it all feels so hard and heavy. And sometimes it doesn’t. Sometimes I’m in awe of my emotional resilience and ability to grieve and adapt. And sometimes I can’t stop crying and don’t know how I’ll move forward. Sometimes I am overwhelmed with gratitude for all that I have. And sometimes I still can’t believe that I am that unlucky one in a million living with this disease.

None of this is new. I’ve been writing about the same themes for the last 10 years and quite frankly, it feels as if my story has become tiresome. I am grateful to have grown and evolved throughout my almost 16 year journey with this disease and also, I’m over it.

I’m over investing so much in staying present and mindful. I’m over figuring out adaptations for simple physical tasks. I’m over hearing the clock tick increasingly loudly as I try to cram in travel and adventurous experiences. I’m over being so disciplined about exercise and taking care of my body when it just keeps wasting away.

But more than all of the above, at this particular moment, I am over the heartache that comes with not being able to protect my kids from my disease.

A few Saturdays ago, my younger son had his first basketball game after two long years. I hadn’t seen him that excited in a while. In fact, we were all excited. To be back in the gym- hooting and hollering, watching him score, seeing familiar faces- it was the mood boost we all needed.

After the game, we walked back to our car with another couple and their son. I was chatting with the mom about summer plans and before I knew it, my forehead was on the concrete, my head was pulsating and I heard my son‘s terrified voice, “there’s blood everywhere!” I looked down and saw blood splattered on the ground and on my jeans.

I’ve had plenty of falls over the years, but only two really bad ones, neither of which were witnessed by friends or family. I immediately offered reassurance, “It’s okay, I’m okay.” I looked up at my husband and asked how bad it was. “Pretty bad“ he said in his reliably familiar calm and compassionate voice. I looked back at my son whose face was frozen with equal parts fear, sadness and utter embarrassment.

I couldn’t get the bleeding to stop. As I sat calmly on the ground, I joked that there was no better company to fall in than that of three other physicians, one of whom ran to find ice, the other to grab paper towels. There were two gashes on my forehead and my knees were scraped and bloody, as I had managed to fall onto them first.

Once we determined I likely didn’t need stitches, we slowly resumed walking back to the car- the other mom apologizing profusely and unnecessarily for not catching me and my husband regretting aloud that we hadn’t been walking with our arms linked as we often do. And just as we were approaching the car, I felt it. I didn’t bother resisting. I rarely do these days. I averted my eyes as I quickly said goodbye, then climbed into the car and started crying. 

I looked at my son in the back seat. He seemed angry and still in the freeze mode of fight, flight or freeze. I told him how sorry I was. I reassured him that whatever feelings he was having were okay. I told him that I wished he didn’t have to experience this kind of pain, and that this was just our reality. And then he finally broke too. Neither of us were able to defend against the overwhelm of emotions. He didn’t want to hear anything I had to say. I didn’t blame him. As my husband quietly drove us home, all I kept thinking was how is this my life.

When we got home I showered, washed the gravel out, cried some more and then did what I’ve learned is one of the few things I can do to prevent the heaviness from crushing me- I reached out to others to hold it with me. I sent a couple of ghastly photos to my sister and my close friends. I sat there for a while in my bathroom, texting, sharing, processing, wondering if I’d have scars, all the while uncomfortably aware of the rational and logical questions I knew I’d have to confront on behalf of myself and others. Are my days of walking short distances independently with only a cane over? Was it time to officially transition to the next level assistive device? Where is the line between being resilient and motivated to do what I can for as long as I can and being stubborn and foolish and in denial?

I was angry that yet again with this disease, I’d been forced to stare at something I desperately didn’t want to see. And now I had no choice but to see it literally every time I looked in the mirror.

By the next day, after having shed the majority of my tears, we pretty much returned to our usual baseline. I sat in the backyard with an ice pack to my forehead, watching as my younger son played basketball and my husband made pizza. As I listened to the classical music coming from my older son’s bedroom, I had a moment of gratitude- for the fall not having been worse and for always having a soft place to land in the life I have created…But it wasn’t enough.

I felt down for a little while longer. Despair even. I didn’t have my usual zest. I couldn’t find my sense of humor. I cried on and off. I couldn’t think about the future (except to consider canceling the trip I had re-booked to Italy for this summer, which now just felt daunting). Every time I awoke in the middle of the night to shift positions, I felt dread. There are countless nights ahead of me. How am I going to keep this all up.

It’s scary and unsettling when I feel this way. When all the defenses are down, I wonder what will happen to me as I get worse. I worry that the coping tools I have relied upon thus far may no longer be a match for what’s coming as my weakness progresses. I worry that I will stay sad. Or grumpy and irritable. I worry that I won’t be as fun. I worry that I will lose myself.

After about two weeks, I somehow managed to find my way back, for the most part. It’s tempting to say that I don’t know exactly how, but I do, because it’s the same formula every time: feel my feelings, no matter how uncomfortable and stay where I am for as long as I need to until most of my feelings are felt.

As for my boys, I know I cannot protect them from how bad my disease may get. My lack of control over that fact feels unbearable at times. To tolerate that discomfort, I have to try to focus on what I can do.

I can make it safe for them to have and express their feelings around my disease. I can tell my son, when he admits to seeing images of my bloody forehead in his mind, that it’s natural for this to happen right after seeing something so scary. I can validate their feelings and help them feel less alone, like when he confesses that he worries about me falling when I’m out by myself. I can try to teach them that emotional agility and a willingness to adapt are really the only reliable tools we have to survive this painful, beautiful, overwhelming life.

And then I can ask them to get the trekking poles out of the trunk for me as we make our way to the gym…

“For after all, the best thing one can do when it is raining is to let it rain.“
Henry Wadsworth Longfellow

“Discomfort is the price of admission to a meaningful life.”
Susan David, PhD

And now for an announcement: The NDF Gala is back in person this year. It will be held on Sunday, April 24th at the Skirball Cultural Center. This year’s theme is “Casino Royale.” If you are available and able to attend, we would love to see you. If you are not and you have the means to make a donation, we would feel so grateful. And if neither are feasible, if you could spread the word to people in your community, it would mean a lot. Here is the link to purchase tickets or make a donation:
curegnem.org