Wednesday, March 23, 2016


There is a young gal who volunteers at the non-profit I work for who has become my hero.  I do not know what issues she’s had to deal with specifically, but I do know that less than two years ago she was in a motorized wheel chair.  She would struggle with one hand to control the levers that operated the chair and she would arrive with her fellow classmates in a bus from a local High School – all under constant supervision.  I was often in a position to provide tasks for these students, as part of their volunteerism/therapy.  She was always the quietest, as she seemed to struggle to communicate, and she was seemingly the least motivated to get involved.
In the spring of 2014, I was invited to a graduation ceremony for many of these students.  I found myself overcome with emotion, as the teachers and administrators gave out awards and certificates to these kids and told stories of their burgeoning independence.  It was touching to learn about their strides and efforts made throughout their time at school.  It made me realize, more than ever, not to take anything that I do have for granted.  But then, of course, I kind of forgot.

Last Halloween, I experienced a hemorrhagic stroke.  The genetic disorder Von Hippel Lindau (VHL) that I’ve written about in these pages numerous times before ( like here) was the culprit.  I had a small hemangioblastoma that decided to burst, which, while wandering the streets, trick or treating with some friend’s kids, caused a major headache, nausea and an inability to walk without drifting sideways.  Of course, I did not know this at the time, nor did I seek medical help for a couple of days – thinking things would improve, which is strange since I was with a close friend when he had a stroke and I’ve seen the horrific damaging effects of a brain hemorrhage on my brother.

After Halloween, things got much worse.  First, I had another brain bleed and it wasn’t long before I lost the ability to walk at all, while also losing control of my left side.  I spent much of November and December in the hospital and half of January in an inpatient rehabilitation hospital. 

During these extended hospital stays, my life became centered around very basic things.  Did I have a bowel movement today?  Can I touch my nose and touch my doctor’s index finger alternately with the index finger of each of my hands?  Can I stand without holding on to something for support for 30 seconds without falling?  You get the gist.  I found myself super excited and incredibly nervous when my physical therapist had me walk a few steps without aid and I was able to do so.  I found myself overcome with a huge swell of emotion when I was able to stand and touch my left foot to a step and return it with actual control and without violently falling to my right like I had every previous time.  These tiny victories were the only things that motivated me and continue to keep me going to my weekly physical therapy appointments. 

Once again, I am now able to drive.  I am able to walk with the aid of a cane.  I am able to shop for groceries and make my own simple meals.  I can do laundry and kind of clean my apartment and myself.  Everything takes more effort than I could’ve ever imagined prior to the stroke, and it all takes a lot more time than it ever used to.  My left hand seems to continue to do its own thing, which is a constant frustration, but I am getting by.

I see that same young gal volunteering at work a couple of times a week now that I am back at work.  She continues to come in, except these days she comes in on her own.  She has progressed so that she stands on her feet and uses a four-wheel walker, in place of a wheelchair, and she travels to and from the work place on the regular bus completely on her own.  She is always bright and cheery and outgoing and she now does projects that take fine motor skills without hesitation nor does she ever show frustration.  She is amazing!  She has gained so much independence and has achieved so much in such a short amount of time.  She is such an inspiration, as she continues to gain her independence, and she has taught me so much.  I can only hope that I progress and achieve as much as she has.


  1. It is really amazing how easy it is for us to slip into taking the activities of our daily lives for granted. I don't think there's anything wrong with it - I just think it's the human condition. Somehow our brains are wired to just not notice the things we do by rote, until we can't do them anymore. I'm glad you're getting better all the time and I can't imagine the frustration you must have felt at not being able to do things for yourself. Here's hoping that you continue to progress and feel good.

  2. Gratitude is one of the purest emotions. Thank you for writing this down!