“On June 28, 2017, at 5 a.m., I woke up like any other day. The sun was rising, and I was completely mentally acute. As I lay in bed listening to the 13-month-old start to stir, I thought, ‘I should get in the shower before I run out of time.’ But when I sat up, the room spun a million miles an hour and didn’t stop. I couldn’t focus on anything.
I put my head between my knees and thought, ‘So this is vertigo! This is awful!’ I’d never experienced vertigo, but I thought if I could just get a shower I maybe would feel better. I tried to get out of bed and stand, but when I got out of bed, I couldn’t walk. In hindsight, what I did was crawl; I supported myself with the bed on my right side and crawled with my left. I only made it about five feet before I collapsed with exhaustion.
When you’ve got two children under four years old, you don’t get sick days. So I gathered my energy and launched myself back up on the bed where my cell phone sat, and I called my husband. This was my worst fear realized; I was alone in the house with two really little kids, and something was really, really wrong. My husband was away, traveling for work in another state.
When I told him I didn’t feel well and I thought maybe I needed help, I think his initial thought might have been, ‘Well, this is rather dramatic.’ After all, it was 5:30 a.m., and he was six hundred miles away. I am not sure what I thought calling him would do, but I was alone and scared, and he was my first thought. He has always been my rock.
Of all the things I remember from that morning, one of the clearest is the moment it clicked for him something wasn’t right. I could hear him typing on the iPad, and I think he was checking symptoms because he could hear my slurred speech. He told me to call a neighbor to see if someone could come over to the house and help me get the kids to school and help out.
I called my friend Karen to ask if she was home. ‘I’m just getting home, but I’m really sick with a cold, and I don’t want to get you and the girls sick.’ I just said, ‘OK,’ and hung up. I hung up and never told her I needed her. Even now, four years later, she still shakes her head at me for that.
After I talked to Karen, I called my next-door neighbors. They are both ex-military, so when their phone rings at that hour of the morning, they answer, ‘What’s wrong?’ My neighbor sent her husband and told me she’d follow as soon as she was dressed for work. I am not sure how much time elapsed between that call and when I opened the door because I had to get myself from one end of the house to the other to unlock the door to let them in. I remember stopping to rest. I remember thinking, ‘I just have to open the door, let the dogs out, and let Carl in.’ It took all of my remaining strength to unlock that stupid door. Carl opened the door, scooped me off the floor, and put me on the couch.
I still didn’t understand what was happening to me. I just knew something wasn’t right. It hurt so much! I had an excruciating headache behind my right ear, and it felt like an ice pick in my head. I could no longer hold up my own head. I asked Carl to get me a towel from the kitchen drawer or one of the kids’ baby blankets to prop up my head.
Carl’s wife, Yvette, called 911 and stayed on with the dispatcher, answering the questions and assessing me. I remember not wanting her to call 911. I didn’t want anyone to go to any trouble, because I figured I’d be fine. Looking back, I am so thankful she followed her instincts and called the paramedics. Carl called my husband and talked him through what was happening while Yvette talked to the dispatcher. My husband immediately started looking for flights home.
I remember asking them to bring me my 3-year-old. I was so afraid she would be terrified to wake up to so many strangers in the house. I wanted to explain the paramedics were the good guys and they were going to take me to the hospital. I needed her to be okay, so I told her she needed to be a big helper and tell everyone where her sister’s bottles and clothes were, what she wanted for breakfast, and where her clothes were. As the paramedics were triaging me, my husband was trying desperately to find someone who could drive one of our cars, with the car seats in it, to take the kids to school. The sheer number of people who came to my aid that day still gets to me.
As I was loaded into the ambulance, another neighbor ran out to speak to the medics. He had just come off rotation at the hospital. I heard him ask the paramedics what the assessment was. Remembering back now, I heard, ‘So, possible stroke?’ But at the time, I was having trouble focusing, forming words, or putting together two related thoughts. He promised to come to check on me after he’d had some sleep. As they unloaded me from the ambulance, I remember saying, ‘No offense, but your rig stinks, and it smells like doughnuts out here.’ Do you know stroke survivors often report smelling toast during their event? I didn’t.
I was in the emergency department for six hours by myself. They ran a number of tests on me, but the first one was a CBC (complete blood count) and chem panel. I couldn’t walk in a straight line, slurred my speech, and couldn’t focus on a single point, so the medical staff thought I was drunk or high. I did, however, also present with every possible stroke symptom. (Balance issues, blurred vision, arm weakness, right side paralysis, slurred speech.)
The tests seemed to take hours to come back. I lay in that hospital bed in the emergency department in so much pain, often for valuable wasted hours at a time without any attention. They did a CAT scan but without contrast. Then they wanted to do a spinal tap. When I asked the nurse what they were looking for with the spinal tap, she indicated it was to test for meningitis. I refused the spinal tap because I knew it couldn’t be meningitis. The nurse told me if I refused the spinal tap, they would release me. So they discharged me with a diagnosis of ‘complex migraine.’
I still couldn’t walk. I was still slurring my speech. They discharged me. I clung to the support rail in the hallways to help myself get to the lobby.
I had Yvette pick me up and take me home. Two days later, and only at my amazing husband’s urging, I sent a message via the electronic charting app to my general doctor. When she read my email, she had her assistant clear her afternoon. My husband took me to the appointment, and it was the first time he’d met Dr. K, whom I had been with for fifteen years.
I remember parts of the assessment in her office. I remember her looking at my husband with tears in her eyes. She immediately tried to schedule a CT with contrast. A contrast CT is when they inject radioactive dye into your bloodstream so they can image it and follow the dye to determine if there are blockages. But because it was late Friday afternoon, the first available appointment was the following Monday. For five days, I tried to drive, take care of my kids, and go about life, but I looked like I’d had a few too many cocktails. My balance was off, I couldn’t walk in a straight line, and my speech was very slurred. I should not have been driving, but the hospital told me it was just a migraine. Right?
I went to the CAT scan appointment on Monday morning (at a different hospital provider.) Afterward, my husband took me to get something to eat across the street from the hospital. I just remember being so tired. I asked him to please just take me home. We hadn’t even gotten a block from the hospital, and my doctor’s office called. The nurse asked where I was, made sure I wasn’t driving, then told us we needed to return to the hospital because I’d had an ‘event’ and they needed to admit me. I was just so tired, and I was scared. ‘What’s an event?’ They didn’t want to tell me over the phone, but I insisted. ‘We think you’ve had a stroke.’
That’s a big, powerful word. Stroke. The ‘headache’ was a spontaneous vertebral dissection. That’s where the inner wall of an artery separates from the outer wall and forms a pocket. The blood pooled in the pocket and formed a clot, causing a stroke. I was off-balance, slurred my speech, my vision was off, and I had right-side muscle paralysis because the stroke impacted my cerebellum. That’s the part of the brain controlling all of those functions. Often, when someone has a stroke, the location of the stroke will be opposite to their impacted side. For example, if a stroke survivor had residual effects on their right side, it is likely their stroke actually happened on the left side. My stroke was just at the base of the cerebellum, so even though it was on the right side, it was so low it impacted my right side.
I remember bits and pieces of my hospital stay. Novant Health Presbyterian Medical Center was remarkable in the care they provided. After being misdiagnosed by the other main hospital system in Charlotte, North Carolina, the care was unparalleled and providers and staff left nothing to chance. Occupational and speech therapists visited my room, the physical therapist worked to help me get up and learn to use a walker, and the neurological staff visited a few times a day, answering any questions my husband or I had.
Then there were the Stroke Navigators. My heroes. Ayeshia and Teresa, BSN RNCs who worked at the ‘stroke bridge.’ These women sat with me to explain, in terms I could understand, everything that was happening and that would happen. These patient unsung heroes became part of my chosen family.
We tried to determine what caused my stroke since the bloodwork didn’t show any abnormalities (except high cholesterol). Our determination was that my dissection was completely spontaneous. I experienced no trauma to my neck or head and no blood disorders. In the months after my stroke, in talking with family, it turns out multiple types of stroke are on both sides of my family. But in the past, strokes were often charted as other things. I’ve had two uncles and one great aunt suffer a stroke, and I didn’t know. Maybe I should have. If I had known, would I have done anything differently? Probably not. I was 41 and had two young children. Who has a stroke at 41? There is always time to change, right? Wrong.
I left the hospital on July 6, 2017, with a walker. On July 28, I went to my first Young Stroke Survivors Support Group. I made my way into that room, and the first two faces I saw were Ayeshia and Teresa. They smiled through tears and hugged me with so much love.
At 41 years old, stroke wasn’t even on my radar. Stroke only happened to old people right? There’s more of us than you’d think. We have superpowers. We have ‘invisible-ities,’ not disabilities. I take longer to answer your questions because it takes a little longer to get through the noise in my brain. I get overwhelmed, overstimulated, and over-emotional. Neuro-fatigue is a big issue. It can come out of nowhere and absolutely flatten me. One day I am 100%, the next maybe 90%, some days less.
Every day is different. If I get too over-taxed, I experience recrudescence, which is the reappearance of stroke-like symptoms. I could experience balance issues, slurred speech, and muscle weakness. I have to pay very close attention to my body. When I experience symptoms, I need to make the determination if it is just because I am tired or dehydrated or if there is something else going on. Time is critical! If it is a new event, getting to the hospital could mean life or death.
I went back to work full-time just a few months post-stroke. I left the hospital using a walker, then I walked with just a cane after about a month. I was able to walk with no assistance a month or two after that. I worked really hard in physical therapy for about a year. I was really lucky with the physical therapist assigned to me. She had studied cerebellum/brain injuries and had only recently decided to specialize. Kelsey was amazing. She continued to challenge me both physically and mentally. We used a combination of balance, core strength, and visual therapies.
I continue to work hard every day. I take a daily body inventory; how much energy do I have this morning, how am I feeling? One of the biggest changes I have made is hydration. 90% of headaches are due to dehydration. Even slight dehydration can provoke a headache. I eat much healthier now, although I still have a weakness for ice cream. I continue to meet with my support group every month, even when I don’t feel up for it because that is when I need them the most.
During the COVID isolations, we have continued to meet but have switched to a virtual platform. It’s a lot easier for some of us to join that way because of mobility issues. Driving at night or in high-stress situations like rain or traffic is exhausting. There’s a Facebook group (Young Stroke Survivors Global Network), and we are over eight thousand strong from all over the world, supporting each other, offering encouragement only those who have been there understand. The group is a private forum open to young stroke survivors and their support (family caregivers.) Anyone who meets that criteria is welcome to join us.
I believe I survived so I can tell my story and bring awareness to stroke prevention. I never could have made the progress I have without my incredible support system. My amazing husband, without whom I don’t know I would have gotten out of bed some days. Yvette and Carl, who came to my rescue that awful morning. My family, for their love and constant encouragement. Novant Health, who has, since my event, become the first stroke trauma center in Charlotte and surrounding areas. And last but not least, the network of survivors, the young survivors out there who offer a constant lifeline for each other.
Here’s what you need to know about stroke. You need to know the signs.
BE FAST. BALANCE. EYESIGHT. FACIAL DROOP. ARMS STRENGTH. SPEECH. TIME TO CALL 911!
If you are curious and want to learn more about risk factors, prevention, and treatment of strokes please visit the American Heart and Stroke Association.
Be an advocate for yourself, and don’t be afraid to ask for help. I wish I would have. I do now.”
This story was submitted to Love What Matters by Nicole King from Charlotte, North Carolina. Submit your own story here.
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