You Are Not Alone

"The greatness of a community is most accurately measured by the compassionate actions of its members." – Coretta Scott King

For a long time, I felt nobody understood my pain. I felt sorry for myself when many of the events we once enjoyed as a family were no longer possible. My self-pity caused guilt when I thought that Kari lost so much more. When I stumbled upon Facebook groups that consisted of stroke survivors, caregivers, and families, I found my community, a group of people who understood.

The posts of others in similar situations provide encouragement. Often, members share daily inspirational quotes accompanied by beautiful images. Daily positive affirmations remind me to smile.

• “Never doubt yourself. You are capable of so much more than you think.”

• “Keep walking through the storm, your rainbow is waiting on the other side.”

• “If you are reading this that means you’re alive. Do you need a better reason to smile?”

My eyes opened to how much worse the situation could be. Posts reaching out for help, expressing a need for acceptance, or sharing personal stories about feeling abandoned break my heart. However, the hundreds of supporters and positive responses offer encouragement. Coping strategies offer support on my darkest days.

Maybe the most empowering product of discovering Facebook groups with others afflicted by stroke is it allows me to support them. I share Kari’s stories of hope and success. Writing about her experiences gives me a chance reflect on my emotions while giving something positive to others I grow stronger and learn to accept and appreciate.

One evening, I read a Facebook post from a stranger named Lily. Her strife following a stroke spoke to my heart. I wrote this poem for her.

Some Day Lily

A violent storm dispersed her petals

Stealing the color that defined her beauty

Waving as they scattered

Leaving her no chance to say good-bye

Standing fixed she retained her leaves

Until the change in season stole the sun

The frost burnt the edges and they drifted

She, the victim of yet another theft

Snowfall buried her remains beneath

Frozen, rigid ground, she lay dormant

Yet, alive — grieving her losses

Resting, regenerating, recuperating

Then imperceptible color challenged the soil

She reached up and grabbed the dewdrops,

Surprised the evergreens, the discouragers

Proving passion and desire prompt rebirth

With each day she grew, stretching taller

Reaching further, unaware of her potential

Until the rain mirrored her splendor, reflecting

Beauty that always existed, a perennial

The tempest ravished her body — her life

But her devoted heart anchored her roots

Strength grew from drinking her tears

Breathing crisp air, and believing someday . . .

As a caregiver, I found a support group. People reached out to ask how I was doing. They messaged me and checked in periodically. It took longer for Kari to connect with others.

Physical healing had to progress first. But when she started attending speech therapy classes sponsored by the University of Idaho, a free outreach program for stroke survivors, she found her people. These people walked in her shoes. Most were older but that didn’t matter because they understood.

The group focused on rehabilitating strategies to battle aphasia. I attended one session with Kari and for the first time heard her express how she felt about her disability. Around me, she cocooned her emotions, never complained. In group she developed wings and grew into a social butterfly. As an outsider looking in, the words touched my heart as the participants shared their vulnerabilities in broken, incomplete sentence. Amazed by their ability to understand each other, I reminded myself they were talking heart to heart.

Kari spoke about being in a room and knowing what was going on around her but not having the words to communicate. Her thoughts remained clear, but the language was missing, words evaporated. She remembered thinking she would wake up from a bad dream, but she never did. Her story provided me a glimpse inside a secret club filled with realities seldom shared with others.

Every person needs a cheering squad to support them. This experience taught me that no matter how hard we try to be a cheerleader to those we love when they hurt, sometimes they need to find their community. Blessed with so many people who loved and sat beside me through all the events, I should not have needed anyone else. However, the chance to bond with other mothers of stroke victims created an opportunity to open up and explore emotions that I had not acknowledged. I needed, as did Kari, someone who felt my pain and understood.

The American Stroke Association provides many resources, including a Stroke Support Group Finder. Stroke victims, families and caregivers who are still looking for their community are encouraged to investigate what is available. The quote on the Help and Support page rang true. “Your stroke is yours alone. But it takes a team for your recovery.” Nobody should or can survive alone. Unfortunately, sometimes it requires the patient to take the first step towards healing. If you feel alone, check out this website, stroke.org.

When Kari, our daughter, had a stroke, I started writing. From my journal has emerged stories. In an effort to support others and provide inspiration, I share them whenever I can.

Kari’s journey is shared in a book on Amazon. The stories begin when her father and I receive a phone call saying she is in the hospital and follow our family through her trauma with a focus on how we all learned to accept help and never give up.

Understanding the Power of Not Yet: Accepting the Challenges of New Beginnings