BrainRain Before The StrokeLightHello and thank you for allowing me to share my story.
It was Saturday afternoon and I was home alone trying to rest. It had been a very challenging week at work. I had fallen asleep in the recliner.
The clap of thunder startled me from my restless nap. I stumbled to my feet and leaned against the wall for support. I was in pain. Again.
I walked into the living room still holding onto the wall. I felt the rain falling slowly at first. But it couldn't be raining. It was February. . . in Illinois.
The outdoor temperature was well below freezing. Usually snow is the only precipitation falling from the sky around here in February.
But this day was quite different. The rainstorm I felt wasn't outside. The rainstorm was inside. It was inside my brain. But how was it raining in my brain? That’s not even possible, is it? Yes it is. The rainstorm was BrainRain. Yes. BrainRain. The BrainRain was flooding my head. The BrainRain was flooding my body. I didn't know it at the time but this BrainRain was a stroke. I was having a hemorrhagic stroke. My brain was bleeding in multiple places and I had no idea what was happening.
The pain in my brain was hot. The pain in my brain felt wet. The pain pulsated at the top of my head and trickled down the left side of my head, like fingernails scraping across a blackboard. The pain in my brain was traveling, plunging deep inside the soft, gray tissue of my brain. It was unbearable pain, inside my brain. At the same time, I noticed an unusual taste in the left side of my mouth. It tasted a lot like metal. It tasted like the smell of an ammonia-based household cleanser. You know the smell, right? Where did that come from? What was that awful taste?
I tried to speak, tried to say something, tried to yell hoping to release the pain. All I could muster was a moan. It was a moan that crawled up from my belly. I kept leaning against the wall for support. I still didn't know what was wrong but I knew I separately needed help.
Suddenly, I felt another clap. The clap felt like lightning had struck. It hit at the very center top of my skull. The pain was sharp. The pain was burning. That clap was followed by a popping sound in my head. My knees buckled and my right arm and leg dangled at my side. I slid down the wall, inched myself over to the couch and leaned against it.
I looked at my right arm. I could see my right leg and my right foot. But I couldn't feel them. They were foreign to my body. My brain struggled to connect with them, trying to understand why they were just lying there on the floor in an unusual position, doing nothing.
My brain was trying to talk to my arm, struggling to tell my leg, “Move. Get up. We gotta get UP.” But no words came out of my dry mouth. My limbs could not and would not obey my thoughts. And my thoughts were swirling. My thoughts were spinning out of control. What should I do? Where did my arm go? Should I call, who did this, why doesn't my arm move, what is, how did, whaaaat!
The heat in my head seemed to become hotter. It felt like fire. Was my brain on fire? I slowly raised my left hand to my head, afraid of what my fingers might find. One by one, my fingers gently searched my scalp. Hmmm. Nothing wet. No flames but I needed to call someone for help. This was a brutal storm. The thunder, the BrainRain, the dangling arm and leg was too much.
I had no idea this emergency, this BrainRain would change my life. I didn't know this emergency would change me and impact my family and friends. I wasn't aware the BrainRain would thrust me unprepared into a new adventure. I grabbed my cellphone. I couldn't understand what to do at first but finally saw a familiar number in my phone directory. I hit the speed dial button. My sister answered her phone and came quickly.
The ambulance took me to the nearest community hospital. That hospital transferred me to another hospital in the city and I spent two days there, according to my sister. I don't remember a thing. The nearest certified stroke center was UI Health in Chicago. I was transferred there from a community hospital. At the hospital, the doctor asked my family to step outside my room so he could speak with them. At the time, I was in and out of consciousness asking for somebody, anybody, to rub my head, hoping for some relief. The doctor gave my college-age son and my sister the bleak news. His words
were short and his tone was very serious.
"Intracranial hemorrhage. Quite serious. The most fatal type of stroke. She has thin, ruptured arteries. Lots of blood in and on her brain. Her brain is swollen. She's having seizures and clots in her legs and lung. We'll do our best but don't know if she will make it. We'll keep you updated."
The moments in ICU stretched into hours and the hours stretched into days. Family and friends kept vigil. My condition worsened and I had to be intubated. My family and friends hoped for the best and prayed for a miracle. As the days turned into weeks, I began to slowly improve. The doctors were shocked. The Lord had answered the prayers with a resounding “YES”. The bleeds began to heal and the swelling subsided. I regained some use in my right side.
The Lord used UI Health to save my life and assist me in recovery and renewal. They weren't able to find the cause of the bleeds. Even after five brain angiograms and thorough full-body testing, they didn't find a direct cause. I didn't have any of the risk factors: never smoked, not a drinker, no diabetes or HBP nor AFib. But as a result of this experience, I am more vigilant about my eating and exercise. The neurological education has been a great help.
I'm thankful to learn so much about our incredible brains.
UI Hospital was home for nine weeks the first time, and approximately ten days with the second BrainRain stroke. I needed surgery on my brain to remove the second bleed. I was discharged with a wheelchair and other assistive equipment. The therapists sent me home with a large packet of exercises, self-care tips and taught me how to walk with a cane and AFO. I needed professional home care the first couple years. My family and friends
were extraordinary. They drove me to my doctor appointments, cooked, shopped, cleaned, helped me manage my finances, cried and prayed with me.
I could not have made it without my sons, sister and my friends.
I am so grateful for the wonderful acute physical and occupational therapy and outpatient therapy which continues even today. It has been seven long years and I have never given up hope. I do have a number of deficits-field cut, foot drop, weakness in the affected arm/leg, some cognitive challenges and chronic headaches. I see these deficits as an opportunity to learn and function in new and different ways.
I am thankful for the BrainRain. That might sound odd but let me tell you why I am so thankful.
When a severe rainstorm occurs, there can be uprooted trees, damaged tree branches, flooding and inconveniences. The rainstorm in my life, the BrainRain, caused some 'uprooting' in my life. I needed to remove some things. I got flooded with many changes. Many of them were necessary.
The 'tree branches' in my life were pruned and are still being pruned. I'm still growing and learning.
Yep. It was painful. I definitely would not have pulled up to a drive-through window and ordered “One BrainRain to go, please.”
But the BrainRain refreshed my thoughts, my relationships, and my health. I now have an opportunity to serve as co-leader of the Living After Stroke support group at the hospital. As I visit and encourage other stroke patients, they strengthen me. I've also had the opportunity to do some stroke public service announcements on local television during his past National Stroke Awareness Month.
BrainRain has given me the chance to serve in various capacities, in my local fellowship and in the community. I’m currently working on my first nonfiction book. It is designed to encourage and empower other stroke survivors to be champions. My book will outline a practical 5-step framework to uncover hurt and develop hope and healing. I'm looking forward to sharing the book with you later this year.
I've gained new friends and met some amazing people. Without having the strokes, I would have never met these friends or had such wonderful experie
Yes. I am thankful for the rainstorm, the clap of thunder and the lightning.
I am grateful for the BrainRain.
©Marshelle Samuels, StrokeLight: Uncover 5 Steps to Heal Your Hurt and Have Hope Again, (Columbus, Ohio, AAE, 2016)