A Sweet Winter’s Day

I’m sitting on a bench enjoying the crisp mountain air, turning my face toward the warmth of a hazy winter afternoon sun, listening to the scraping sounds of snowboards and skis coming to a stop near a chairlift. I’m having a break after skiing for the first time in 11 seasons; 10 years to the day of my brain hemorrhage.

Skiing has been the last frontier-the last activity I regularly enjoyed previous to my brain injury that I haven’t tried to participate in again. Skiing had been an important part of my winters since I learned to ski at the late age of 19 or so. Mark and I went skiing when we were dating, and continued into our married life. I surprised myself and a few of my instructors when I passed the Ski Patrol exams in the mid-90’s, just a couple years after learning to ski. As a young family, Mark continued to be on the Ski Patrol and skiing was an integral part of our family life. We all continue to laugh at stories of the kids over the years, fun memories of simple, family fun. I couldn’t think of a better way to celebrate today’s milestone anniversary than to try my favorite winter sport again, whether or not I was successful.

The factor that made this day so very special was the support from my family. My daughter and her best friend Ian joined us from Colorado, and of course, my darling Mark, ever supportive of me, and even my dear son texting encouragement to me from Arizona. The quiet triumph I had today as I awkwardly made my way down a couple of green runs was maybe less important than the love I felt from those around me. If there’s a reason I survived my stroke 10 years ago, it was to continue to be a part of their lives and do my best to support and love them in return. I am blessed beyond measure, as cliche as that might sound.

I’ve learned a lot about myself and my body during this last 10 years of recovery. Lately, I find myself wondering if my deficiencies are stroke-related or just part of aging. I’m pretty determined not to let either one stop me. Just this last year, I worked gig jobs, took up paddle boarding and “tennis” for the first time (I’m not very good at the latter) am currently working a seasonal part-time job in a warehouse (10-hour shifts on my feet), took a class at our local community college, and participated in my first art festival. I’ve improved my diet, exercised more, and tried to live each day through the lens of love as much as I can. I’ve had failures too, over the last 10 years. I learned that working a stressful job full-time is too detrimental to my brain health and had to quit. I often have a hard time concentrating and don’t follow through on projects and ideas as much as I used to. I am always, always tired. After my stroke, I experienced what it’s like to almost lose all of oneself, to be totally dependent on others for one’s care. I won’t ever forget what that feels like.

There’s a world of experiences and life out there and I want to do everything I can to truly LIVE. I will always struggle with fatigue, left-side weakness, and minor miscellaneous brain idiosyncrasies that Mark and I have noticed. I would expect nothing less after what happened to me 10 years ago. But today was just one step back to something familiar and beloved. Thank you for sharing it with me. Hurray, I went skiing!


Five Years Passed

Five years ago on December 11, 2012, I survived a subarachnoid brain hemorrhage of unknown cause. My stroke. This 5-year anniversary is a milestone of sorts; again I have defied yet another statistic, the one that states that 25% of female hemorrhagic stroke survivors suffer another stroke within 5 years of the first. That’s on top of a 50% initial mortality rate and another 25% mortality rate within the first year of survival. I really can’t even fully process those statistics and how they’re related to me. It’s almost like one of those surreal dreams where you’re watching a car wreck happen from the side of the road but suddenly everything shifts and now you’re driving the car.

Since the stroke, I’ve gained as much as I’ve lost. The ‘old’ me was athletic, driven, full of energy and ideas. I lived to ride my bike the few years leading up to my stroke, and was even considering joining a cycling team. I was volunteering for things like construction work and hurricane relief, kicking a** and taking names while sheet-rocking, texturing, framing, and roofing houses. (I dislike roofing, btw. Not sad about giving that up.) I took care of our home, tried to be a good mom, ran my own business. I really liked the independent, strong woman I was. Now I’ve lost most of those things, but I’m coming to terms with it. I can still drywall and texture like a pro if I need to, as long as I don’t have to stand on a ladder. I lost my cycling but gained a renewed love of hiking, which I share with my daughter. I express myself through my photography now. I’m still a mom with the same struggles and love as before. I am too tired to cook dinner most days, but that has opened the door for my Mark who is really enjoying cooking and learning about food. I am becoming more comfortable with myself and where my life is at now. It’s a work in progress.

This last year has been the most “normal’ year since my stroke, but also the most challenging in many ways. I have been working full-time outside the home for over a year now. I love my job, but I struggle considerably with fatigue. My neurologist assures me it’s all part of the healing process, and it will take my brain 5-10 years to heal. In the meantime, I pour all my energy into getting through the workday. I have an understanding boss who knows my story, and co-workers who know it too. They are patient with me, despite completely forgetting things on occasion. That forgetfulness happens at home too. It’s unnerving to have absolutely no recollection of doing or saying something. Not like forgetting something and later something jogs the memory and one has an “oh, yeah; now I remember” moment, not like that. There’s nothing there. Nothing. I don’t think I’ll ever get used to that. Working in a busy office has also afforded me the opportunity to socialize more, has helped lift the brain fog I’ve had since my stroke, and given me work that challenges me to become better organized and think critically again like I used to, pre-stroke. Work is good for me, but balancing work and exercise is one of my biggest current problems. I’m so exhausted when I get home, I’ve really pushed exercise to the back burner. I am continually, day and night, reminded of my weak foot and leg. Overcoming this dilemma is a major focus for the coming recovery year.

I discovered another unsettling part of my new self this last year. Life has had some ups and some real downs in my personal life, and there are times when I really struggle with depression and anxiety, things I never really experienced before my stroke. About a month ago, I got completely out of my routine with supplements and my anti-seizure med, forgetting to take it for 2 or 3 days. Luckily, I didn’t have a seizure, but I did experience the most horrific extended episode of anxiety I’ve ever had. It gave me insight into that kind of crippling anxiety that so many people face daily. I realized that, when off my med, that is the real me now. As independent and headstrong as I’ve always been my whole life, it’s a rude awakening to see oneself in this different light. But my denial of this new reality is part of an ego I need to let go of. I’ve been given the gift of life, and although not the same life I had before, it’s a new life, my life. I’m still here for a reason. I ask God to help me accept the humility of this entire experience in order to become a better person and open myself up to be closer to Him.

So this anniversary day, I will take a deep breath and do what I’ve always done, keep moving forward. I have good, stable health, a life and soulmate whom I adore and who takes such loving care of me, two beautiful (and challenging at times) adult children, and a whole lot of years ahead of me. I am a survivor.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

This is how you’ll likely find me these days when I have free time.  In the mountains, wild gray hair that I refuse to color, and with a camera in my hand.  Photo by Mark Hawkins.

The Soul Breath

Friday afternoons-off work in the summer are a new treat for me.  Our office closes at noon and the staff disperses to enjoy the afternoon, do errands, or even work in the quiet office. After a long winter, “free” Friday afternoons are a welcome respite. One year ago tomorrow, July 1, I was hired for my job. Effectively, today is my one-year work anniversary. I didn’t even realize the date or its significance until I sat long enough to take in some stillness.

I came home and decided to take our aging dog, Emma, and my little buddy, Duke the cat, outside for a bit. It’s a gorgeous day of cool summer temps and billowy white and grey clouds.  There’s the slightest promise of rain in the wind, and the electric blue Wyoming sky reminds me of solid, bright acrylic sky painted on a child’s drawing. It’s just that blue.  Duke and Emma used to wrestle a lot when they were younger. (Cat haters out there, when you bring home a 6-week old kitten and raise him with a dog, he grows up thinking he’s one of the pack). Now they are both getting on in years, and the wrestling has given way to lots of laying down and resting. My usual aversion to laying on the ground disappeared when I saw how relaxed the animals were, so I plopped down in the grass with them. All I could hear were the robins and meadowlarks singing in the nearby fields, a few cars passing by, the rustle of our trees in the breeze, Duke purring, and Emma panting and sniffing. And this is what I saw :

This photo was taken just a short time later with my iPad; it’s not intended to be a great photo of any kind. What’s notable is how I felt while I was looking at this scene. For once, I didn’t have any electronic devices nearby to distract me.  I didn’t have anything I had to get up for, go do, no one to respond to or talk to. No one or nothing to worry about, just for a few minutes. There was complete and total peace while I stared at the shifting clouds. It’s as though my entire soul took a deep breath. After a few minutes, the stillness was over. Duke decided to run, Emma tried to chase him but her hip went out, and I quickly attended to both of them.

I reflected on that deep soul-breath I allowed myself to take, and I realized a few things. This last year has been a roller-coaster. Even though I was working sometimes full-time as a freelancer, working now in an office setting with people, office politics, and set hours has really been harder than I ever thought following my stroke. My neurologist recently reminded me that I’m still in recovery, which seems strange after nearly five years, but is very much the reality of brain injury. I have struggled this year with fatigue in ways I never imagined. I’ve also struggled a bit with anxiety and depression, by-products also very common to brain injury survivors (and worried mothers of young adults, double whammy!)  I don’t need medication, but I do need to keep my guard up all the time and take care of myself. It’s incredibly easy to slip down the rabbit hole but much harder to get back out.

I also realized that the stillness I experienced today was something I used to be able to achieve when I was on my bike, but in a different way.  Long distance road biking is as much a mental challenge as it is physical.  Those mental challenges gave way to a clarity and stillness of its own, as thoughts melt away and one becomes perfectly in tune with breath and movement.

The biggest thing I understood after my soul-breath was that my prayer life is not yet the deep or rich prayer I crave, because I’m not taking in that stillness. I pray more the last couple of years than I ever have, and it’s still a learning process.  When I pray, my anxieties are often at nuclear levels, and I’m just shoving it all at God as quick as I can because I’m hoping he’ll take it from me and release me from the burden of it. I pray for thanksgiving too, but again it’s a rush of thoughts and intentions. I have forgotten about the importance of letting my heart and mind be still.  It’s not only about thanksgivings or pleas for help, prayer is also about the listening.

The quieter you become, the more you are able to hear. -Rumi

I’ve heard this quote before, and seen it attributed to both Rumi and Ram Dass. How hard it’s become for those of us in this gigabyte-tweet-must-do-everything-now world to find time, first of all, and then to make our hearts still to listen to God.  I want to find more of that stillness to take a soul-breath.  I have so very much to learn.

“Be still and know that I am God!”  -Psalm 46:10

Duke the cat and Emma the dog, lifelong friends and my buddies.

Three years and counting

Today marks the 3-year anniversary of my hemorrhagic stroke.  It has become a day of reflection for me each year.

It’s been hard to focus on the good things for me this past year, despite how much good there was and is.  Depression and anxiety are words I never thought would find their way into my life, but they have; it happens and you just have to deal with it. I’m ok, but some days are harder than others.  I retreat into the safety of solitude and prayer when I’m not sure which way to go.

At three years post-stroke, my recovery is still ongoing but I’m physically strong and the damaged part of my brain is stable.  My left foot and lower leg are a constant reminder to me that I’m not the same, but I’ve learned and am still learning how best to care for them.  The biggest thing is to keep moving, strengthening, and stretching.  All. The. Time. New people I meet have no idea what happened to me, which is a great compliment they can’t tell. Words come easier, the brain fog is lifting a bit (when I can get enough sleep), and I’m strong from a lot of physical exercise and weight training.  I’m not cycling at this point; I tried it a few times and although I can do it, it takes so much focus it’s just not fun right now.  Maybe with some more time.

What I realized during the night though (another sleepless night, thanks #wyomingwind) is how remarkable it is that many of my movements and actions are completely automatic again.  There are hundreds of muscle movements in my left hand, arm, and leg that just happen now without my having to “tell” my brain what to do.  When I remember what a breakthrough it was for me to have enough wrist and finger movement to stack a couple of cones during PT at the rehab unit, under such intense concentration I was immediately exhausted, it’s pretty mind-blowing that I’m typing this at normal speed just like I used to pre-stroke.  Our bodies are incredible!

I can’t end my yearly reflection without thanking the love of my life for his undying  and constant support and encouragement.  He is my absolute, unequivocal rock.  Thank you Mark, my sweet love.

“This being human is a guest house. Every morning is a new arrival. A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor…Welcome and entertain them all. Treat each guest honorably. The dark thought, the shame, the malice, meet them at the door laughing, and invite them in. Be grateful for whoever comes, because each has been sent as a guide from beyond.”  -Rumi

Me at the Grand Canyon April 2015.  I did a 9-mile hike down and back up the Bright Angel Trail, a feat a brain hemorrhage survivor like me doesn’t take for granted.

Chained Together

Mike and Paula have been friends of ours since our kids were preschoolers.  We really missed them when they moved to Worland, WY some years ago. We’ve always kept in touch and see each other on occasion.  They are treasured friends.

Their nest has emptied and, with both their kids now in college at the University of Wyoming, they are off on a transcontinental tandem cycling adventure, crossing the United States from Anacortes, Washington to Brunswick, Maine.  I’m very excited for them and wanted to share a link to their blog, so you can follow them too!  They will be posting updates as they go, and you can sign up for email alerts when new posts are added.

Mike and Paula begin their journey tomorrow, May 27, 2015.  Follow them here, at Chained Together : Paula and Mike’s transcontinental tandem tour

Mike and Paula, best of luck to you both.  Here is my wish for you:

May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand. (-an old Irish blessing)

Stay in touch, cycling friends!

Then and Again

In the spring of 1987, I was an awkward junior in high school. On a blustery day  in April or May, I took a road trip with my Mom from our hometown of Sheridan, Wyoming, to Laramie, Wyoming, to visit my older brother, who was attending the University of Wyoming. At the time, I was delving into the world of photography for the first time, taking a photography elective at school and learning to see the world from a different perspective.  My school-owned 35mm film camera went everywhere I did.  It was on this trip that Mom stopped along a desolate patch of Interstate 25 near mile marker 228 so I could run up the side of the hill to photograph an old homestead.

I-25 runs north-south beginning in Buffalo, Wyoming, and continues south until its exit into Colorado just south of Cheyenne, Wyoming.  I’m just old enough to remember the construction of the interstate, and what it was like to make the 8-hour trip from Sheridan to Denver, CO on the “old” two-lane highway when I was a child.  Throughout the state, many sections of the “new” Interstate re-routed drivers to new landscapes and away from small towns previously reliant on business from travelers; notably, the small oil town of Midwest.  Just before the southbound exit for Midwest at about mile marker 228 lies the remains of the old homestead.  It’s easily noticeable from the road because of the two cottonwood trees planted on either side of the house, the only two trees for miles around.  But you have stop, get out of the car, and walk to the top of the hill before the old house can really be seen.

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View of the homestead as seen from I-25. Photo courtesy of Google Maps
I took one or two rolls of film that trip.  In those days, film was expensive and shots were planned.  You didn’t waste film, because bad shots couldn’t simply be deleted.  I processed and printed the pictures myself in the darkroom at my high school.  The picture of the house became part of a photo essay about Wyoming landscapes (I got an A), and afterward, was packed away in an accordion folder with most of my other high school photography work for many years.

I now live in Cheyenne, Wyoming, and have made the trip between my current home back to Sheridan, where my Mom and old friends still live, many times over many years.  Each time, I see the old homestead and have watched with equal parts sadness and fascination as it deteriorates.  One year, the porch roof finally fell, and the front door was obscured by the roof blocking the entrance.  Several years later, the back wall of the house fell in, and the two side walls remained, precariously holding up what was left of the roof.  A few years ago, the tree on the north side of the house died, but remains standing.  Finally, in the last year or two, the remaining walls collapsed, leaving a sad reminder of someone’s history at the mercy of the harsh Wyoming elements.

And who’s history is it?  The old homestead has sparked discussion between me and my husband over the years as we drove by.  Who lived there?  Someone once took pride in the old place.  It’s fenced, complete with welded pipe gates at the front and back of the house.  I seem to recall there used to be a clothesline, or the remains of one, in the yard.  When was it settled?  Why did they leave?  Were they ranchers?  Did children grow up there? Did they go into Midwest, which is several miles east of the property, to shop and interact with the community? Does someone still own the property?  Do they go visit the homestead? Interestingly, although I-25 now runs quite close to the homestead, the older roads do not go near it.  The home had to have been accessed from its own road or trail which most likely connected to a local county road.

As I look at the picture of the homestead in its current condition, I’m struck by the profound changes of time.  Yes, it’s sad that the old house has fallen and one of the trees has died.  After all, I can only imagine what kinds of memories were made within the tar-papered walls.  Maybe some were good memories, maybe some were not.  Perhaps the rooms were lit with oil lamps and warmed with a coal stove as the notorious Wyoming wind shrieked outside during winter.  Possibly, hand-sewn cotton-print curtains hung in the windows and billowed softly as a summer breeze cooled the home on hot days. Conceivably, all those memories are still alive in someone’s mind, but they may also be gone forever with the passing of whomever lived there.

There’s something kind of beautiful about how this place, and hundreds of other abandoned places around our state, have reached the end of their lives naturally.  Not razed by loud, dusty yellow iron making way for new progress, not remodeled into something newer but not quite its old self, not burned, dismantled, or otherwise assisted into decay by people.  There it all lays, naked and barren, a pile of lumber and nails not terribly unlike the pile of lumber and nails it began as.  It’s not morbid, it’s just the circle of life, Wyoming style. Windblown, cold, and forever West.

The homestead, photographed in 1987 and 2015.
The homestead, photographed in 1987 and 2015.
Postscript: Just out of curiosity, does anyone know anything about the old homestead?  I’m most interested in learning something about its history or the people that once lived there.

The Reluctant Cyclist

Our daughter Lauren was first introduced to life in a family of cyclists by riding in our old yellow and red Burley, which is a pull-behind trailer, snugly fastened in her baby carrier.   She soon grew into toddlerhood, and the baby carrier was replaced with pillows, books, stuffed Beanie Baby cats, juice, and snacks.  All these items had to be present in order for her to be agreeable about getting in the Burley.  If any ingredient was missing, we might be far away from home and hear an insistent little voice coming from behind her Dad’s bicycle, “I’m hungry!”  or  “I want something to drink!” The insistent little voice had no patience for the fact that her father had to find a safe place to stop, pull over, and meet her important demands.  It was just easier to have everything packed in the elastic Burley pockets so she could help herself.  The pinnacle of her Burley experience occurred one year we participated in the Moonlight Classic ride, a night ride beginning and ending in downtown Denver.  We packed the Burley as usual so she’d be happy, with the addition of a lantern hanging from one of the interior support bars of the Burley.  She got a lot of attention in the middle of the night from fellow riders and onlookers as she happily snacked on goldfish crackers and read her books by lantern light while we pedaled along.  She was in love with this arrangement.

But growing too big for the Burley meant that it was time for Lauren to learn to ride her own bike.  This was not exactly how she planned to participate in her family’s favorite activity.  Pedal on her own?  Keep up with her older brother?  Impossible! (The latter is certainly true, none of us can keep up with him).  That would mean exercise and (gasp) work!

We collectively set out to try to teach and encourage Lauren to ride her bike.  We bought her the quintessential pink sparkly girly bike with training wheels, which she liked to look at and play with, filling the polka dot basket with either stuffed cats or real cats. As long as she didn’t have to get on the bike herself, she liked it just fine, thank you very much.   Her brother Dan, who was about 8 at the time, did his best to cheer her on, running alongside her on the patio, and even helping her push her foot down on the pedals when she couldn’t get going. Teaching her wasn’t easy.  There were a few tears.  There was even more whining.  But mostly there was a lot of just-not-interested.  We lamented to ourselves that she might not really get the hang of it and if she did, she probably wouldn’t be joining us on rides.

It was ok with us if she didn’t want to be a cyclist like the rest of us; to each his own after all.  We finally decided we only wanted her to simply learn how, just as a life skill she should have.  What she did after that was up to her.  She reluctantly did learn how, and that was the end of her bike-riding days for several years.

Lauren watched her brother become immersed in cycling throughout his high school years.  He got a job at a bike shop at 15, and continued to work there until he graduated.  He commuted to work and school year-round, defying weather and gas prices.  He mountain-biked several times a week, raced a little bit, and talked a lot about bikes in general, all the time.  A running joke at our house was, “Dan says, if  [insert personal or world problem here], ride your fixed gear.”  In other words, riding was the solution to everything.  This constant barrage of bike talk and culture between her brother and parents must’ve rubbed off on her.  Last summer she decided she wanted to dip her toes into the world of bikes, so she started to ride a bit with him.  First it was just around the neighborhood, then maybe to the nearby gas station, then to the grocery store.  It soon became clear that the years of worn-out hand-me-down bikes from Dan were over and Lauren needed her own bike.

We surprised her last summer with her very own, brand-new Trek 7.2 city bike, a perfect all-around choice for her, and found on sale, easy on our wallet in case things didn’t work out.  Suddenly, a whole new world opened up for her.   She discovered she could ride by herself to the store to get her own snacks anytime she wanted (some things never change).  She discovered she didn’t have to wait for someone to give her a ride somewhere, she could just go.  She discovered that sweet taste of freedom that is so very unique to cycling.

Recently, Lauren, now 16 and on the cusp of getting her driver’s license, was at our church helping her youth group when I received a text asking to ride to a friends’ house.  I OK’d the trip and asked her to text me when she got there, knowing that she had a couple of busy streets to cross.  My phone beeped upon her arrival and she wrote, “It was fun!”  I re-read those words several times, smiled, and jokingly replied, “Who is this and where is my daughter?”

Turns out she discovered the very best thing of all about cycling.  It was fun.  That’s the beautiful, simple joy about being on one’s bike that we never expected she would experience, and we’re so happy for her.  She tells me she wants to keep riding even after she gets her driver’s license.  I hope she does; for either transportation, enjoyment, or both.

Welcome to cycling, Lauren.  It IS fun. And you can have snacks.

Lauren and Dan (in front) on her maiden ride with her new bike.
Lauren and Dan (in front) on her maiden ride with her new bike.


World Stroke Day

Today, October 29, 2013, is World Stroke Day.  In my own effort to bring awareness, I wanted to post a great infographic I saw yesterday on Facebook, via the National Stroke Association.  

Stroke is preventable in many cases, but not mine.  While heart problems, poor diet, and lack of exercise can be contributors to Stroke, this is not the case for me.  There is actually very little regarding cause that I have in common with my fellow stroke survivors. But the thing I do have on common is the effects on my mind and body. That’s why I like this infographic so much.

The reason I want to post this information is to help people understand a little bit what it’s like to live with Stroke.   I’m incredibly blessed, my brain has healed a lot and I’ve recovered so much function that most people who meet me don’t know this ever happened to me.  So many other Stroke survivors are not as lucky.

Everything that is listed in this infographic has happened to me.  Some effects lasted a few days, or a few weeks, then I recovered function.  Other effects persist to some degree, as I approach my 11-month anniversary.  My point is, you can’t always see Stroke right away.  If you know someone who has had a stroke, (or you know me!) please be aware: things that might seem “not quite right” with your friend or loved one are most likely just an effect of the stroke.  They are still the same person they’ve always been on the inside, no matter what manifestations the Stroke has presented.