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!

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