I still remember those eyes, wide and glistening, and icy blue.
I remember the mouth moving and words coming out, but it was as if they were suspended in molasses. Nothing made sense anymore and there was fear. Perhaps it was my own fear reflected, but I was no longer sure. My right side hung limply, and something pricked in my mind. Stroke. It was there for a moment, but long enough to gain some sort of traction. The feeling of a never-ending explosion in my head was intense. I tried to speak but the words jumbled, and my mouth failed to move. Little twitches started on my left side, although this was only relayed to me later. My memories are like snapshots and I remember my mother’s face, EMTs, and a whirlwind of activity. I remember an awareness of my three young children.
“Do you use drugs?”
A brief snap to reality as the suggestion was ludicrous. I felt trapped in my body and smothered by the agony in my head. I drifted away, hovering in the suspension of nothingness. Hushed whispers of my attendees, unsure. They didn’t know.
"Do you use drugs?"
This was only the beginning of watching my health slip away. Although I was treated for a stroke, the hospital later confirmed that it was not a stroke or a transient ischemic attack. They did not know what it was, but most of my symptoms abated and I was discharged with plans to follow up with a neurologist. Once home, I received in-home care including occupational and physical therapy, along with a visiting nurse. The weakness continued almost unabated. I had horrible headaches constantly and a slew of symptoms that made no sense to me or anyone else, for that matter. Friends and family cobbled together a schedule where I was never left alone. Day after day, I spent my time sitting in a blue recliner as other people took care of my children and tended to the household things I previously managed.
Each day that passed was another day where nothing was known. Uncertainty slowly tap-danced in my head until it consumed me. I wondered if it was all in my head and I berated myself for not trying hard enough. I felt like a failure. Even when I received diagnoses of hemiplegic migraine, chronic migraines, and a subsequent diagnosis of fibromyalgia, I felt defeated and weak. My days were dictated by things I couldn’t control. Subtle barometric pressure shifts, or the smell of popcorn could leave me bed-bound for days with migraine and severe pain throughout my body. My illness seemed to take everything from me and it wreaked havoc on my family, as well.
I was angry, and I hated that feeling that just simmered under the surface. I knew I needed an outlet. One day, while feeling particularly defeated and cantankerous, I decided to take to social media. I just needed to vent. So, I adopted a nickname and hid behind the image of a cat. I think I railed against injustice and screamed into the void for a good month before I felt somewhat satisfied. Alas, my background in public health was unhappy being ignored. I started to research and then share things related to public health, mental health, research, and clinical trials.
Each day that passed was another day where nothing was known.
Each day I felt less alone as I spoke my truth. More importantly, the months of grief and anger gradually lifted. During moments of clarity, I started thinking about how I could use my experiences to help others. Almost by accident, and with the help of a few friends, I discovered this world of patient advocacy.
Things moved rapidly, and I felt a burgeoning confidence and sense of purpose pouring from me like a wellspring. I went from sharing experiences with chronic illness, and then suddenly there were invitations to share and collaborate. There were plans beyond just getting through the day. I felt myself change from the inside, motivated in a new and exciting direction. Even my family and friends noticed the difference and cheered me on in every way they knew how.
Once I started, it felt as if my entire life had shifted.
While I do still struggle and have challenging days, my life isn’t a total loss as I once believed. Each day, brings something new. I am hopeful for the treatments and cures that will inevitably come from research and patient involvement. I feel grateful for the amazing support of this dynamic and caring patient community I am part of. I am also exhilarated by my work with other patients and advocates across the healthcare spectrum.
There is something in us all that drives us to be more than just ourselves, and to seek a life filled with meaning and purpose. While I never planned on being chronically ill, I intend to live my best life, move forward with hope, and help others do the same. In the end, my own journey as a patient helped me realize the power that was inside me all along.
Rie Lopez, is a health educator, empowered patient advocate, mum, wife, and perennial patient. She earned a Master of Public Health, focusing on behavior change and health promotion, but will always be a bit of a health policy wonk. Rie loves to speak and write about mental health, self-care, and chronic illness. You can follow her on Twitter at @RieOfLetters or at her blog, Rising Inside the Embers. She is probably drinking tea and wearing sunglasses.