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

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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.
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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

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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.

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.  

 

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Keep Moving Forward

My journey back to cycling since my hemorrhagic stroke (a brain bleed, not clot-related) has not gone like I had imagined it.  When I was in the first few months of my recovery, I looked ahead to the end of Summer 2013 and figured I would be riding 65-mile day tours just like I had at the end of Summer 2012.  But my body has not recovered exactly like that.  This reality has forced me to analyze my attitudes about goals and what they really mean to me.

The first time I got on a bicycle after the stroke was about five months into my recovery.  My left leg was still pretty wobbly, and I knew I wasn’t ready for my road bike.  I ventured out on my old hardtail mountain bike, with my husband and son in tow.  Everything felt marginally okay, until I had to stop.  I put my leg down to stop, and it crumpled up underneath me. I realized that my body and my bad leg did not remember how to stop.  It’s hard to explain, but my muscles didn’t know what to do.  Although I knew in my head how to stop, knew what it felt like and could envision it, I had to start over from square one like a child riding her bike for the first time.  I learned to think through the stop from start to finish, step by step.  It wasn’t easy, and it took a lot of practice.  Time passed, and finally I was ready to try clipping in on my road bike.  I spent over an hour starting and stopping in my back yard on the grass, so I could fall without getting hurt (which I did a lot).  Finally, I was starting to get it again, awkward as I was.  My long-term goal of just going out for a ride was waylaid by this whole start-and-stop problem that I didn’t expect.

Last summer I was a 42-year old,  in the best physical condition of my life, enjoying my 6th year as a recreational road cyclist.  Multi-day tours with mileage averaging 60-80 miles, day tours of at least 65 miles, and training rides of 20-30 miles were my norm until the stroke.  I even finished my first century two summers ago and planned on doing more.  These are humble accomplishments in the cycling world, for sure.  But to go from that state of physical condition to where I am now has been a dramatic adjustment.  I really had to change how I envisioned my recovery.  ‘Out’ was the unrealistic goal of riding the 65-mile Tour of The Moon my husband and I had enjoyed so much in October 2012, or most of my other favorite summer tours. ‘In’ was the goal of completing a ride without falling on my mountain bike.  Next goal was getting back on the road bike.  Next was completing a training ride without falling, and so on.  Right now I’m up to about 35 miles on my road bike, no falls and getting more and more confident with starts and stops. My last riding goal for the summer is to simply participate in the Venus de Miles Colorado for the sixth time.  I won’t be able to do century or metric century as in years past, but I can still ride it.  Small goals, small victories.

I’ve gone through most of life with big goals, and not ever had a problem with how I’d set them or attained them. If I worked hard enough, I reached them.  This time though, I don’t have total control over how my body is healing.  I can only work very hard and let time do the rest.  We’ve all had failures and have to learn how to deal with them in our own way.  Failure doesn’t have to become a reality, though, when goals are just a little smaller.  Reaching those small goals is just as satisfying as reaching the large ones; the important thing is to keep moving forward.

Keep moving forward.

Keep moving forward.

Those three words are what have kept me grounded throughout this entire recovery.  Those three words are what reassure me that no matter how small my goal might seem, it’s worthwhile and fulfilling to reach it.  No matter how little a step forward might seem, it’s still further along than before. Whatever your goal was or is, try not to dwell on looking back or worrying about the far-ahead future.  Step by step, small accomplishment at a time, you will get to where you need to be. Just keep moving forward.

“Go back?” he thought. “No good at all! Go sideways? Impossible! Go forward? Only thing to do! On we go!” So up he got, and trotted along with his little sword held in front of him and one hand feeling the wall, and his heart all of a patter and a pitter.” 

J.R.R. Tolkien, The Hobbit

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The New Me: My Stroke and Recovery

I’ve been meaning to tackle this subject for several months on this blog.  And the further in time I move away from “it”, the less I want to talk about it anymore.  “It” is becoming a bad memory.  The “it” is part of my life though, so I still need to process it and respect where I am now.  You see, nearly 8 months ago to the day,  on December 11, 2012, I had a stroke.  It nearly killed me.  This is my story.

December 10 was an unremarkable day.  I worked, we cooked dinner, the kids did their homework  etc., and everyone went to bed.  I remember that I had a bit of an upset stomach later in the evening, so I had a finger of wine before retiring for the night.  Sometimes that settles my stomach.  However in the night, I woke up and knew I was going to vomit.  I went to the bathroom and proceeded to have severe vomiting and diarrhea spells every hour or so.  I was miserable.  I couldn’t figure out why I was sick; food poisoning didn’t make sense and the flu doesn’t come on that quick.  In the morning, my husband wanted to stay home with me (I must’ve looked pretty bad) but I shrugged him off and told him I’d be fine.  He had just left for work when I felt another wave coming on, so I got out of bed to go to the bathroom.  I stumbled when I walked.  “Wow,” I thought, “I must really be dehydrated.”  I barely made it to the stool and couldn’t get myself positioned on it correctly.  I called to my teenage daughter, who was getting ready for school, and asked her to call her Dad after all and tell him I was too dehydrated to sit up straight.  In just another minute, literally, my left side started to collapse.  My arm, which I was using to brace myself up, went out from under me.  I slipped off the toilet onto the floor.  What in the hell was happening?  I called out to my daughter again, my voice barely above a whisper.  “Call 911.”  As I lay there waiting for help, I felt myself lose control of my body.  My left arm curled up into a fetal position and I couldn’t move anything on my left side. And although I was going in and out of consciousness or sleep, one of the two, I was completely lucid.  I never had any kind of headache throughout the ordeal.

The rest of December 11 is a blur, but I remember bits and pieces of it.  I remember being loaded on an ambulance gurney and how cold it was outside, and thinking; “All these cars going by headed to the school…who will see me this way?” (yes, apparently my vanity was still intact).  I remember the EMT in the ambulance saying “possible stroke” on the telephone, speaking to the ER on the other end.  I remember getting the T-shirt I had slept in cut off.  I remember the helicopter ride to Denver, having many IV’s poked in me, and not being able to move.  I remember being so very tired.

I think I had every possible test in the world over the course of the next 10 days I spent in a Denver hospital. Four days in ICU and another six days on the neurological floor didn’t yield many answers for us or for the doctors.  What they knew was I had a hemorrhagic stroke, with a pool of blood that spanned nearly the entire length of the top of my head from front to back, on the right side.  According to the University Hospital of New Jersey, 37.5% of hemmorhagic stroke results in death, compared to 7.6% of ischemic stroke.  Additionally, there is more than a 50% fatality rate with subarachnoid hemorrhage, like I had, and 25% of women die within a year of their first stroke.  Another 25% will have another stroke within 5 years.1 Great statistics for a 42-year old, previously healthy Mom!

But I am not one that has ever fit very well into categories.  I never did as a child, a teen, a young mother.  Sometimes not fitting in was a painful thing you know?  But this time I think it’s fine.  I’m not going to be a statistic.

In this way, I haven’t really fit the mold of a stroke patient. I recovered too fast.  I was motivated to get out of the physical rehab unit where I spent 2 1/2 more weeks away from my precious family.  I was nice to my nursing staff, although a few of them thought I was unfriendly because I couldn’t smile at first.  But within a couple of weeks, movement started to come back. I wanted my life back, and I worked hard to achieve that.

One of my most vivid memories from my time in the acute rehab unit (ARU) was the night I first regained movement in my left hand.  I had a hospital bracelet on my right arm that said “Fall Risk”, and it kept sticking to the hairs on my arm.  It was making me insane.  The sheer annoyance of having that stick to my arm and not be able to simply move it with my other hand was incredibly frustrating.  I would wake up in the night, what seemed like every hour but was probably not that often, and would strain and think about moving my left hand so hard it was exhausting.  The “thinking” part of movement was a new thing to me, and my physical therapists continually reminded me to actually think about the movement I wanted to make, even if the movement wasn’t happening.  It was all about re-establishing the brain processes that had been damaged.  So I continued this process through the night;  wake, feel the bracelet pulling my arm hairs, strain and try to move my left finger to loosen it, fail, become incredibly exhausted, fall asleep again.  Sometime close to morning, I did it.  I had the slightest movement of my index finger, and I moved that dang bracelet.  That opened the floodgate to more hand and finger movement the next day.  My nurses were amazed.

That’s how this whole journey back to healing has been.  A struggle for awhile, a breakthrough, and a whole new aspect of my life regained.  On January 7, 2013, I went home.  I could barely walk, but I managed to be discharged without a wheelchair accompanying me.  Just a walker.  Within two weeks, I had ditched the walker and used a cane for a week, then I ditched that too.  I kept doing physical therapy for months, and I’m not through recovering yet.  I still have deficiencies I’m hoping will recover with time.  I am easily fatigued, my short term memory is spotty, and I have difficulty concentrating sometimes.  Physically, I continue to make strides, but my balance is bad, my left leg sometimes gives out when I ride my bike, and my shoulder isn’t working right after a bad fall in April.  But I won’t give up.  I’m not going to fit into those statistics.  I’m strong, I watched my son graduate from high school in June, and I can stand in my living room and give my lovely daughter a hug with both arms.  Nothing makes you appreciate the simple, beautiful things in life more than having them almost taken away.

After extensive testing over several months, with my last MRI in February, the doctors were unable to find the source of my bleed.  They suspected an AVM (arteriovenous malformation), which is basically a flawed blood vessel as the cause of the bleed.  But they can’t find it anywhere, so I will not need surgery.  The last neurologist I saw told me my chances of having a recurrence were less than 1%.  I was elated, then that night as the news settled in, I cried.

One other interesting thing about this whole experience was my lack of emotion throughout the ordeal.  People ask me, “Weren’t you scared?” but I wasn’t – I simply didn’t feel anything.  Maybe I was in denial as a way of coping, maybe it was something happening in my brain.  I don’t know and probably never will.  But there was one time when I was still in the hospital in Denver, that “it” got to me.  My dear, sweet husband and I had a little time alone together.  There were no visitors, doctors or nurses coming in and out, just quiet.  He was able to open up to me about what he had been going through.  He told me how he asked to stay on the helicopter deck and was allowed to watch the helicopter take me from our local hospital to Denver.  He told me how he watched it leave and wondered if he would see me again.  At that point in time, he wasn’t sure.  I pictured him standing there, in his warm red winter coat, watching as three medical professionals and a flying metal transport took his wife away.  Everything hit home.  I won’t be that statistic.  “It” won’t define me.  And baby, I’ll always come back home.

1.  University Hospital, Newark, New Jersey.  Stroke Statistics.  Retrieved August 8, 2013 http://www.uhnj.org/stroke/stats.htm