I Don’t Want to Be Here, Yet There’s No Place I’d Rather Be

I sat in the cold and sterile exam room at UCLA Medical Center with my husband, awaiting a second opinion about symptoms he’d been experiencing for months. Forever etched in my brain is the moment the neurologist delivered the news. He spoke plain and clear, and his certainty was undeniable.

 

“You have ALS, Brian. I’m sure of it. You’ve got two to five years left.”

 

So many emotions washed over us as we sat in stunned silence. Our love at first sight, fairy tale romance had suddenly turned into a horror story.

 

Amyotrophic lateral sclerosis (ALS) is a neurological disease that impacts voluntary muscles. Motor neurons in the brain die, cutting communication from the brain to the muscles. Patients with ALS (PALS) eventually lose the ability to walk, talk, eat, and breathe on their own. It is 100% fatal, with few treatments and no known cure as of yet.

 

Though much is known about how ALS impacts the body, the timeline for each patient varies widely. Some people pass away within months while others can live years with the disease. We spent a few weeks in a daze, struggling to grasp the reality of the diagnosis and how it would impact our active lives. The anxiety of the unknown was incredibly heavy and remained at the forefront of my mind. It still does.

 

That happened almost ten years ago.

 

Amazingly, Brian is still here! Sadly, Brian is now completely paralyzed. He lives in a power wheelchair and is on a ventilator 24/7 to help him breathe. He can only move his eyes. I walked away from a successful career to care for him. At no point did I ever envision myself as a full-time caregiver, yet when my health insurance benefits changed unexpectedly, I was left with no choice.

 

Caring for Brian has been the hardest thing I’ve ever done and there are days I feel as though I won’t make it through this. He requires help with everything and most of my time, day and night, is spent caring for him. It’s beyond exhausting, both physically and mentally. I’d give anything to feel his arms around me once again and to hear his voice tell me he loves me once more.

 

While there’s so much he can’t do, we’re lucky in that we live in the modern age. A computer with an eye gaze system allows Brian to be able to control a computer with his eyes. Since being paralyzed he’s created over 100 pieces of art and is now collaborating with several musicians to record an album. He doesn’t wallow in his sadness but instead uses his time to stay productive and live the fullest life he can.

 

Watching the love of your life slowly slip away in front of your very eyes is unimaginable pain. Though I’ve often felt trapped in a nightmare, I continue to be inspired by the determination I see in Brian to live each day to the fullest even though he is literally trapped in his own body. His smile and the way he greets each day with a positive attitude is astounding, forever reminding me to treat each day, each breath, as a gift.

 

Though the last ten years have been harder than anything I thought possible, I’ve gained a perspective about life as well as a self-awareness for which I’m grateful. I no longer take my health for granted. Each and every day I acknowledge my able body and appreciate all the things it can do.

These challenging years have really shown me who I am, while also driving me to continue to be a better person.

 

Being a caregiver has taught me how strong I am while also showing me how weak I can be.

Being a caregiver has taught me how selfless I am while also showing me how selfish I can be.

Being a caregiver has taught me patience while also showing me how impatient I can be.

Being a caregiver has taught me humility while also showing me how much of a badass I can be.

 

I don’t want to be here. I want to be back in California, planning our next camping trip. I want to be working on big projects again. I want our date nights back. I don’t want to be a caregiver day in and day out, doing ugly and heartbreaking tasks, stealing moments to cry in my closet, quietly praying for the suffering to end while also begging for Brian to be here with me. I don’t want this heavy and grieving heart.

 

Yet, without this experience, I wouldn’t have grown as much as a person. I count my blessings each and every day, with an increased sense of awareness, not only about myself but about so many things.