Delanie Stephenson

@delanie-stephenson | contributor
A young woman, wife, and mom who's life changed at the age of 33 due to a brain stem stroke. She's the author of The Calm before the Storm and Mom Had a Stroke.

The Long and Winding Road of Stroke Recovery

It’s been 10 years since I had a stroke. A whole decade. That’s about 1/4 of my life. That’s 10 years of walking with a cane, being an emotional basket case, and being disabled. I’m now married 21 years, my kids are teenagers, and I’m “retired.” Things sure are different. When I first came home from the hospital, I thought this day was far away. And here I am in the blink of an eye. I thought once I could walk and talk, my stroke recovery was done. It’s only just begun… As a younger person in the stroke survivor demographic, I have a lot of living to do. I knew the stroke would change my future, but I didn’t understand how it would change my family’s future. There have been a lot of anxiety, emotional issues, and financial strains for my family. This led to lots of doctors’ visits and therapy appointments. Lots of dreams never came true for one reason or another. While life threw me a curve, it did open some new doors. I have met other awesome survivors and those that work with stroke patients who have become lifelong friends. I have been given opportunities to do things with and for my family that a typical working mom would not be able to do. I’ve found my love of writing again, which has saved me on many occasions. Most importantly, my faith has become stronger due to all I’ve been through. Having a stroke has definitely been a challenge, but one I will fight every day to overcome. Here’s to several more decades of learning, growing, recovering, and loving. Cheers!

The Long and Winding Road of Stroke Recovery

It’s been 10 years since I had a stroke. A whole decade. That’s about 1/4 of my life. That’s 10 years of walking with a cane, being an emotional basket case, and being disabled. I’m now married 21 years, my kids are teenagers, and I’m “retired.” Things sure are different. When I first came home from the hospital, I thought this day was far away. And here I am in the blink of an eye. I thought once I could walk and talk, my stroke recovery was done. It’s only just begun… As a younger person in the stroke survivor demographic, I have a lot of living to do. I knew the stroke would change my future, but I didn’t understand how it would change my family’s future. There have been a lot of anxiety, emotional issues, and financial strains for my family. This led to lots of doctors’ visits and therapy appointments. Lots of dreams never came true for one reason or another. While life threw me a curve, it did open some new doors. I have met other awesome survivors and those that work with stroke patients who have become lifelong friends. I have been given opportunities to do things with and for my family that a typical working mom would not be able to do. I’ve found my love of writing again, which has saved me on many occasions. Most importantly, my faith has become stronger due to all I’ve been through. Having a stroke has definitely been a challenge, but one I will fight every day to overcome. Here’s to several more decades of learning, growing, recovering, and loving. Cheers!

How Music Therapy Helped My Stroke Recovery

I have always loved music. I loved to sing along with the radio. I’d sing in the shower. I was in the kids’ choir at church. I played the piano and flute for several years. I was in marching band in high school. So I was not unfamiliar with how to sing to tune or clap to the beat. Once I had a stroke, all that changed. After the ischemic brain stem stroke, I couldn’t talk or move. My communication was limited to blinking my eyes. After much hard work at subacute therapy, I wound up in a wheelchair at inpatient therapy at the hospital. I could say short sentences and walk short distances with a walker at this point. I was all too familiar with physical therapy, occupational therapy, and speech therapy. I was surprised to find myself in music therapy. Although music had been part of much of my life, that came to a crashing halt after my stroke. I could barely hum, let alone sing or play an instrument. So I was surprised to be sitting in a circle with other stroke/TBI survivors and holding a pair of maracas. Everyone in the group had some type of simple instrument to play, and when the leader played a guitar, everyone else played along with her, making “music.” Now, I wasn’t regularly a maraca-shaking kind of girl. I could barely shake the maracas let alone keep any type of rhythm. I honestly felt foolish and didn’t know how this was supposed to help my recovery. The next music therapy session was later in the week and I was made to go. I wasn’t there by choice. This time, the leader was having the survivors each choose a song and everyone sang along with the guitar player. I kind of mumbled, halfheartedly participating. Then, the leader brought me a big notebook of songs and asked me to pick one. A bunch were rap or hip hop — not my style. Then, I saw a familiar one I had always loved, “The River” by Garth Brooks, my favorite singer. As I listened to the familiar beginning strums of the song, I forgot where I was and sang my heart out. I had the song memorized, so I didn’t have to look at the words. I closed my eyes and I sang along to the tune I’d heard so many times before. I could actually sing better than I could talk at that moment! I cried tears of joy because for a few minutes, I felt “normal.” At speech therapy the next few days, I asked my therapist if I could sing some more Garth Brooks songs. She looked them up on YouTube and I sang loudly to “Friends in Low Places” and “The Thunder Rolls.”  I would listen and sing away to songs in my hospital room while I was by myself. Amazingly, I remembered words to songs and sang clearer than when I had a regular conversation. It helped me feel like me somewhat. I never thought singing would help me to speak again, but there you have it. Singing was a way for me to feel close to a regular person and encouraged me to try harder in other areas of my recovery. Now, I still sing in the car along to the radio, but my teenagers tell me to stop. Heaven forbid mom get her groove on.

Seeing the Bigger Picture in Stroke Recovery

If something itches, we scratch it. It’s an innate animal instinct. Animals find trees to rub against so they can scratch their itches. But what do you do if you can’t reach whatever itches? You might ask someone to scratch the places on your shoulders or back that your arms can’t reach. But what do you do when you can’t reach the itch and you also can’t ask anyone to scratch your itch? Flashback to June 2012: I was in a subacute rehab hospital to receive therapy for my brain stem stroke . I was “locked in” at this point, meaning I could only move my eyes. It was my first day at this place, and my mom was with me. I was very nervous because I had no way to communicate, and many of my needs couldn’t be met because I had no way to express them. That included everything from restroom needs to bathing. I wasn’t sure how it would all work considering I couldn’t speak. I was on the fifth floor of this old hospital, and the air conditioning wasn’t the best. I was hot, and I was sweaty, but I couldn’t tell anyone. I was miserable, and I was complaining loudly in my head. Then my nose started to itch. You know, the kind of itch that drives you wild — the kind you have to scratch right away . But I could do nothing about it. I couldn’t move my fingers to my nose. I looked at my mom for help. I tried to look at my nose with my eyes — which is very difficult, by the way — to get her to relieve my itching. Nope, she kept talking about something else. She was totally oblivious to my itchy, scratchy situation. But you know what? Eventually the itching sensation went away. I got distracted by the nurses and therapists coming to talk to me and evaluate me. Over the next few weeks, learning to walk and talk were my focus instead of that time I couldn’t scratch an itch. I was distracted by focusing on the bigger, more important things, like getting home to my family. This experience taught me the importance of focusing on the big picture instead of the smaller details. Everything changes eventually. And if you run into an itch you can’t scratch, try not to worry. It may not feel this way now, but this too shall pass.

Viewing 'The Shack' Movie as a Stroke Analogy

I went to Redbox today to rent the usual DVDs: one for the kids, an action movie for my husband, and at the last minute, I decided to pick one out for me. I wanted to see “The Shack” for a while so I thought, why not. I have to sit through all those action movies with my husband, it’s my turn. I honestly didn’t think my husband would get into it. I thought he’d be passed out in 30 minutes. But he stayed awake the whole time. So I knew the movie had to be good if he found it interesting. By the end of the movie we were both blubbering with my son asking over and over why we were crying. This was a great movie in my book. Now, one may think, what do a movie and stroke have in common (those who know me understand I have a stroke connection for everything). I’ll give you five reasons: 1. Out of body experience I remember leaving my earthly body and watching them work on me. No bright lights, just everything got fuzzy like I was in a long tunnel. It was like I was hovering over the ceiling, watching them work on my body. I didn’t  go to a shack, but I do remember thinking about my family. 2. Time to reflect on what’s really important While not being able to talk or move for several weeks, trapped inside my body with only myself to talk to, I was able to think about priorities. I would hear nurses complaining about their work or family life and I’m like, I wish I was just able to worry about my disobedient kid instead of trying to relearn to walk. I wish I could work. The little things I used to worry about didn’t seem so important. 3. Having to handle your inner demons: why me attitude There was a point where I would just cry and think, why me? Why do I deserve this? What did I do wrong? Then finally I came to the point of asking, why not me? Maybe the big man upstairs had bigger plans for me… 4. Trusting in others to take care of you When you lose all mobility, you become very humble. From bathing, wiping your butt, dressing you… more people saw me in my birthday suit than when I had my babies. But these were the same people: nurses, doctors, therapists who were trying to make me reborn, so to speak. I had to learn to trust that they knew best and just wanted to see me get better. 5. Acceptance: will I accept this and fight like hell, or not? When faced with adversity, we are all given a choice: just the easy, comfortable way and give up or take the road less traveled. The journey is harder, but the destination is so worth it. There’s been a lot of controversy over whether this movie is a good example of Christianity, whether it portrays God in the right light, etc. Whatever your opinion, “The Shack” is a great reminder that life is full of adversity, it’s unfair and doesn’t always go as planned. It’s how you react to it as to what determines the type of person you’ll be. Stroke survivors: yes strokes suck but you can choose the road less traveled. I promise, it’ll be worth it.

Longing for a Simpler Life for Our Family

As I was getting water for my medicine tonight, I happened to glance above my kitchen sink. My eye was caught by a silver dipper (a kitchen tool similar to a ladle). Why do you have a dipper Delanie, you might ask. After all, we do have running water in abundant supply, glasses to drink out of. Did you forget to put it up the last time you ate soup? No, I left it out for a reason. To remember what the simpler life is, the happier I’ll be. My great-grandparents grew up on a mountain in Southwestern Virginia: coal mining country. They grew their own food, had no electricity and no running water. They even had an outhouse (which I’ve had the pleasure of using a time or two). As a child, I remember visiting the house on the hill many a time. A four-wheel drive is still needed to get to the small clearing. They had no indoor plumbing (1980′). No air conditioning to speak of. They often left big barrels outside so they could use rain water as a source to get water. On their kitchen sink was a big bucket of water with a silver dipper in it. I watched in awe as people would drink the refreshing mountain water, time after time, from the same dipper. I was flabbergasted. How could they live like this, I thought. I grew up in central Virginia in the suburbs. A small hustling and bustling college town. The store and the mall were minutes away. From a young age, I wanted to get out, back to the country of my roots. My parents, like all parents, wanted me to have all they had and more. More opportunities abounded in the city. The people, the traffic….. it was all going to get me everything I needed at my fingertips, but I wanted quiet. Space. The simple life. That brings me back to the dipper. I live on open land where I can’t see my neighbors. The mall is 30 minutes away. We have to drive 20 minutes to Walmart (heaven forbid!). We have chickens and a donkey. My kids can go outside and run without worrying about passing cars. When we go outside, it’s quiet. Peaceful. Simple. Like life with a dipper. My great-grandparents were happy. I know my memory is not spot on and some facts my be distorted, but the premise is still the same. They raised wonderful children and lived to a ripe old age. I hear stories of my Pa carrying the coal on a sled up the side of the mountain and I smile. This is what I think of when I see the dipper. Simple.

The Unexpected Way My Stroke Changed My Marriage

On November 2, 2002, my husband and I vowed to stay with each other through good times and bad. At the young ages of 22 and 27, we focused more on the good part. We were both healthy individuals. Our future lay before us. We were unstoppable. The bad times were reserved for maybe our golden years — or so we thought. Fast forward 11 years to a house and two kids. Our daily lives were full of work, bills, and bathtime. Life had thrown us a few hiccups, but nothing we couldn’t handle. We were both extremely happy with the life we had formed. All was going to plan. Until one day in June 2012 when I came home from work and didn’t feel right. An upset stomach turned into right-sided numbness that turned into being unable to move and talk. It was like I was living in a dream. Things like this weren’t supposed to happen. We didn’t have time for this. My husband rushed me to the hospital where we learned I’d had a brain stem stroke and the outcome didn’t look so good. I was out of it, but doctors told him I might not survive the night, and if I did, I might be in a vegetative state for the rest of my life. Imagine taking in that news about your life partner. Days later, I was finally able to understand the magnitude of what had happened. I couldn’t move or speak and didn’t know if I ever would again. Trapped in my body with nothing to do but think, I thought of my husband and young kids. They needed a wife and mother, not a vegetable to take care of. My husband deserved a helpmate, not a burden. It didn’t seem fair to them. Fortunately and very slowly, I was able to speak short sentences. My husband and I talked. A lot. About life, kids, what the future would look like. I’ll never forget telling him he had the right to leave me and find a more suitable wife. Someone who could love on my kids the way moms are supposed to. Someone who could fulfill him as a wife. I gave him permission to leave. But you know what? We just celebrated our 20th wedding anniversary in 2021. He stayed. He wouldn’t even talk about leaving me. He’s bathed me, given me suppositories, and wiped my butt — very romantic by the way. He’s dealt with my depression and emotional breakdowns and helped the kids get adapted to their “new” mom. There have been tough times and still are but at the end of the day, he’s there to kiss me goodnight and say, “I love you.” My husband endured my stroke in a way I could only imagine. He woke up one day with one woman and the next with someone new. Yet, he didn’t leave me. Those wedding vows were not just words to him. They meant something. That no matter what, he’d be there for me. And I for him. We are more in love now than we ever were — and we’re all living happily ever after.

Coming Home After a Stroke: Fantasy vs. Reality

After spending 12 weeks in a hospital and rehab facility, following my brain stem stroke, I had a lot of time to daydream about life once I got back home. “Home” was the first word I spoke once I was relearning to talk. There, I would find my husband and two children. I imagined sitting outside in my blue lawn chair and watch my kids play while my husband did yard work. I would dream about this every night when I went to sleep. I would never again complain about giving my kids baths, making dinner for my husband, and was actually looking forward to housework. I was so ready to get home and eat regular food. I was ready for “normal” life. I wasn’t able to go to my home after I was released from inpatient rehab. My family was staying with my mother-in-law who helped with the kids while my husband went to work. It made sense, but it still hurt when I realized life was not immediately going back to the way it was. I was still on a walker and a PEG tube. I was very limited in what I could do. If the kids needed something, they’d go to dad or grandma. Not me, mom. That was hard to take in. As more months went by, day therapy took up my time and I finally was walking better with a cane. This allowed me to help out more. But we were still far away from “normal.” My husband still had to help me shower in a shower chair. Grandma still cooked supper and packed my kids’ lunches. My husband went to work, but I didn’t feel like his wife. I was just something else he had to take care of. Finally, my family and I decided it was time to go home. I was so excited! I could do what I wanted instead of having people watch my every move. Independence. Then my bubble burst. I had someone stay with me during the day for the first couple of months after we returned home. It was still someone else fixing supper, washing clothes, and helping the kids with homework. I grew frustrated. This was not the “normal” I wanted. It felt like forever before I was allowed to stay home alone. The first day I did stay by myself, I had so much freedom, but I didn’t know what to do. I honestly was so tired; I slept most of the day. This became a pattern. Maybe I was mentally worn out or physically worn out from all the therapy, but I would sleep all day until my husband and the kids came home. It was a way to pass the time and not have to think. My husband would fix supper. He would make sure the kids had showers. He was tired from working all day. He was grumpy, snapped at others and I felt like it was because of all of the things he had to do for me. I fell into a depression. Again, not “normal.” Springtime is a time of reawakening. The world wakes up from a deep sleep and turns into an active environment once again. I felt it. I was finally able to go outside and enjoy fresh air on my own. I could fix simple meals. Laundry was an all-day task, but I could manage. I was learning to accept the fact that “normal” would never be normal again. We had a new normal. I slowly helped more around the house. I actually put on weight because I was eating regular food so much (which I’m still trying to lose). The kids came to me and asked for help with their homework. I wasn’t always able to help, but at least they asked. My husband seemed to accept this new normal routine as well, and we talked a lot more than we did before my stroke. About our dreams for the future, how this would affect our kids, how we were devoted to each other — more than ever. It’ll be 10 years next June, a whole decade since my family has had to deal with this new life. I had the stroke, but it affected us all. I had so many dreams and ideas of how life would be once I returned home, and honestly, life has been nothing like I imagined. I’ve written two books about my strokes and several articles. I got a tattoo. My kids are thriving. My husband and I are best friends. I’m not saying life is easy. We’ve endured a lot since the stroke. But my life after stroke is nothing like I imagined it would be. It’s better.

Coming Home After a Stroke: Fantasy vs. Reality

After spending 12 weeks in a hospital and rehab facility, following my brain stem stroke, I had a lot of time to daydream about life once I got back home. “Home” was the first word I spoke once I was relearning to talk. There, I would find my husband and two children. I imagined sitting outside in my blue lawn chair and watch my kids play while my husband did yard work. I would dream about this every night when I went to sleep. I would never again complain about giving my kids baths, making dinner for my husband, and was actually looking forward to housework. I was so ready to get home and eat regular food. I was ready for “normal” life. I wasn’t able to go to my home after I was released from inpatient rehab. My family was staying with my mother-in-law who helped with the kids while my husband went to work. It made sense, but it still hurt when I realized life was not immediately going back to the way it was. I was still on a walker and a PEG tube. I was very limited in what I could do. If the kids needed something, they’d go to dad or grandma. Not me, mom. That was hard to take in. As more months went by, day therapy took up my time and I finally was walking better with a cane. This allowed me to help out more. But we were still far away from “normal.” My husband still had to help me shower in a shower chair. Grandma still cooked supper and packed my kids’ lunches. My husband went to work, but I didn’t feel like his wife. I was just something else he had to take care of. Finally, my family and I decided it was time to go home. I was so excited! I could do what I wanted instead of having people watch my every move. Independence. Then my bubble burst. I had someone stay with me during the day for the first couple of months after we returned home. It was still someone else fixing supper, washing clothes, and helping the kids with homework. I grew frustrated. This was not the “normal” I wanted. It felt like forever before I was allowed to stay home alone. The first day I did stay by myself, I had so much freedom, but I didn’t know what to do. I honestly was so tired; I slept most of the day. This became a pattern. Maybe I was mentally worn out or physically worn out from all the therapy, but I would sleep all day until my husband and the kids came home. It was a way to pass the time and not have to think. My husband would fix supper. He would make sure the kids had showers. He was tired from working all day. He was grumpy, snapped at others and I felt like it was because of all of the things he had to do for me. I fell into a depression. Again, not “normal.” Springtime is a time of reawakening. The world wakes up from a deep sleep and turns into an active environment once again. I felt it. I was finally able to go outside and enjoy fresh air on my own. I could fix simple meals. Laundry was an all-day task, but I could manage. I was learning to accept the fact that “normal” would never be normal again. We had a new normal. I slowly helped more around the house. I actually put on weight because I was eating regular food so much (which I’m still trying to lose). The kids came to me and asked for help with their homework. I wasn’t always able to help, but at least they asked. My husband seemed to accept this new normal routine as well, and we talked a lot more than we did before my stroke. About our dreams for the future, how this would affect our kids, how we were devoted to each other — more than ever. It’ll be 10 years next June, a whole decade since my family has had to deal with this new life. I had the stroke, but it affected us all. I had so many dreams and ideas of how life would be once I returned home, and honestly, life has been nothing like I imagined. I’ve written two books about my strokes and several articles. I got a tattoo. My kids are thriving. My husband and I are best friends. I’m not saying life is easy. We’ve endured a lot since the stroke. But my life after stroke is nothing like I imagined it would be. It’s better.

Community Voices

I Don’t Get It

My sister is 2 1/2 years younger than me. We were close growing up. Played together, were in many activities together, rode to school together. We had your basic love/hate sister relationship but really became friends once we hit the college years. I’d cover for her when she stayed out late and I confided in her when I started drinking alcohol. She was maid of honor n my wedding and vice versa. We had kids around the same time and could swap stories about sippy cups and potty training. I had the friendship with her I’d always wanted.

That being said, we didn’t always agree on everything. Politics were a no no to bring up at Thanksgiving. She became much more conservative than me. Our mindsets changed. It happens when husbands and children enter the picture. We could agree to disagree and often picked on each other to avoid arguing. Things were good.

Then comes 2020. COVID. Masks. Social distancing. Avoid large crowds. Virtual learning. Protect yourself and your neighbor. Common sense to me. I stayed home, wore my mask, did my part. Once the shot came around, I got it as soon as possible. Job done, right?

Conversations with my sister became different. “I went to church today. No one wore masks.” “We went out to eat.” “We went on vacation.” These were words that were often texted to me as my big outing for the day was to Dollar General. I watched the news at night and saw people dying, in the hospital, sick for days. “I’m not going to get the shot because COVID is like the flu. The media has hyped it up” she’d say.  I don’t get it. Seriously, I don’t. Our own grandfather died from COVID last fall.

My sister finally decided to get the shot and got COVID a week later. Thankfully, it was mild and she’s now refusing the second dose. She still swears the media has lied to us. I don’t want to lose my relationship with my sister, but it just makes me mad. It’s people like this that will keep spreading COVID, making things difficult for everyone else. I’m mad about COVID. I don’t want to be mad at my sister. But here we are.

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