Hurray! Three years ago today, at this very moment, I was in the Intensive Care Unit at Methodist Hospital, Texas Medical Center, on morphine, with blood pressing against the right side of my brain - but, remember, on December 27, at the Emergency Room, a certain arrogant doctor told me that my recurrent, sudden headache was "nothing life threatening."
     I remember the last thing I did as a "whole functioning person" - hook up the DSL on my computer. That, after spending the 28th in agony on the sofa, taking Vicodin for the excruciating headache, which masked the pain... I read the directions, installed the software, hooked up the phone line, modem, made sure it all worked - then I was tired. It was midnight, or after. I don't exact;ly remember the time.
     I started to crawl across our waterbed to my side by the wall - Chuck was in the kitchen - and bam! that headache hit me like a shotgun blast. They describe it as a "bolt of lightning." I cried out, "the headache" "my head!" wrapped my hands around my head, rolled back into a fetal position - Chuck came into our doorway, and I could feel the numbness in my left foot, my leg "OMG, I'm having a stroke, call 911" - and I couldn't move, or feel, my left side. I was paralyzed.
     It was a blood vessel waiting for an opportune moment to blast off - filling my right pareital and frontal lobe with blood. No, there is NOTHING that can be done after it happens - the time to prevent it was when I called doctors and went to the emergency room, but was sent back on pain medicine, diagnosed with "nothing life threatening."
     None of the post-stroke tests showed WHICH vessel burst - it closed back up, hiding the evidence. Great. Meanwhile, I spent three days in ICU before going to Recovery, then to the Stroke Rehab Unit for the next 25 days or so, until my total 30 days in the hospital were up, and Insurance said to send me home (and at the time, I thought the hospital had control of keeping me prisoner! HA!) 
     Three years ago, I beat the statistics. In stroke terms, hemorrhagic strokes make up 20% of all strokes - intracerebral strokes like mine have a 2% survival rate at time of the event and 44% mortality rate after 30 days.
     
     But I am Stroke Girl! Three years later, my wheelchair is how I navigate safely. I am not totally paralyzed, and when I am suffering from painful spasticity or atrophied muscles, I try to remember that feeling three years ago, completely helpless in the hospital bed. When I am frustrated that I can't complete a task - easy for a "normal" person - reach something, turn my wheelchair around, stand up straight, put on my contacts, dress myself, take a bath, clean the house... I try to remember those early days, when I didn't recognize things on the left side of my food tray, couldn't sit up at all, couldn't hold anything with my left hand - didn't feel anything on my left side.

     In January 2007, I began researching my paternal genealogy, my ancestry heritage on my father's side. In a year, I developed generations of our family tree, connected with distant relatives that I never knew and found at least one through persistent Googling, looked at both sides of my family in the Civil War, found family photos holding mysteries, put stories together about many different ancestors. I love history - it's fun to have family in it. The Ohio Civil War Genealogy Journal invited me to write about our family in the Civil War - their co-editor is helping identify one of my photos of the 71st Ohio Regiment Reunion that has our great-great grandfather in it.
     I wrote the copy for my friend Nancy Weekley's website. She is a creative representative for specific talented photographers and illustrators, whose work spans commercial to editorial, depending on the client's needs. 
     Earlier this year, I wrote marketing copy for another client, Adept Word Management, who had reported to my friend Day Barlow that her business  substantially increased since I had written direct mail pieces for her during 2005-2006.
      In November, I created an Ancestry book about my family... it was a complimentary copy, and printed beautifully. An actual book of several generations of my family, Taylors, Owenes, Bockelmans... and their connecting families. Plus, all my brothers and sisters.

     Greta is a bit of a maniac - in the back yard, she runs along the fence, barking at the neighbor dogs, who like to be maniacs with her! Otherwise, she eagerly brings my slippers, AFO (ankle/foot orthotic), socks, pillow, kleenex - anything out of place or on the floor or which might earn her a treat! She is wayyy too smart - we have to spell to keep her from bringing things to us! I love her so much and am blessed to have such a great companion.
     Three years ago. Wow. My emotions fluctuate - I cry a lot (emotional lability, they call it), and my creativity is not the same, nor is my organizational skills. But, I'm still adapting, still writing (and pretty fast typist with my one right hand!), and ALIVE!!!
       
     Happy Stroke Girl Survivor Day! Remember... 

      "Celebrate every drop of rain, inhale deeply every joyful breath, for the rainbow of life rises even more beautifully tomorrow ~
  when the long, dark hours of tonight's thunderstorm is conquered by the bright promise of the morning sun.
God gave us memories, so we would have roses in December... God bless us, every one." ~ Sheri Bockelman, 2005
    

Yes, it has been two years! Incredible. It seems longer sometimes - like I have been in this wheelchair forever... but, when I really focus, not that much time has gone by, considering that 24 months ago tonight, I was in an ICU bed with a very uncertain prognosis.

Chuck has been great - what would I do without HIM? He is making hamburgers right now, so I will finish this later... my husband is a fantastic cook. He does everything here at home, and taking care of Stroke Girl is not easy, especially when I am in pain... I can be very fussy and tearful. It is frustrating for him to see me like that, and not be able to help me. It is nothing he CAN do - I am in chronic pain. 

     Today started at 1:30 in the morning. That was my first "wake up" after my husband helped me into bed at 11 p.m. Already, my left side was getting stiff. I calculate: ten o'clock was my last dose of tizanidine. Three and a half hours, the average life-span of the effectiveness of the spasm-relieving drug. I usually try to hold out for 4-5 hours between doses, but it's 1:30 a.m. and I can't get comfortable when half my body is rigid.
     Finally, I reach up for the metal rung of my iron bed, pull myself into a sitting position, drag my left leg around and balance on the edge of the mattress, reach for the pill bottle, hold it with my cramped left forefinger and thumb - turn the lid with my good right hand, remove the pill, slip it between my lips, replace the lid. Carefully set the bottle down.
     Reach for the water bottle, use one hand to open it, swallow the pill, take a drink, replace the lid.
     Reach back for the bed rail to lay back down, swing my left leg back up, try to get comfortable with my bed of various pillows - constant "musical pillows" going on during the night.
     Now it's after 2 am.

     The next time I wake, it's 5:20 a.m. My left side is Tin-Man stiff again, and I am in so much pain, I can barely move. I stretch out from the curled-up position that I am in, slowly, and turn over. This is not easy, when half the body just wants to stay locked in place. I remove the CPAP mask from my face (that's another story), and finally manage to get to the side of the bed, repeat the pill routine, and carefully stand up, holding on to my mattress for support so I don't fall before I can get to my wheelchair, only three feet away.
     I only have use of my right hand, and right leg. I lift my left foot up on the wheelchair pedal, tuck my left arm next to me in the chair to keep it safe (wouldn't want to get it hung up on a door knob or something) and roll myself using that one leg and one arm backwards - on to the bathroom.
     Taking a shower is scary. I miss taking a bath, damn it. Oh, how I long for those days of luxury bubble baths, soaking in hot water, in the candle-lit bathroom, music on... the last time I enjoyed that to its full extent was three days before that big bad bleed, on Christmas Eve, 2004. Now, taking a bath means using a gait belt, and having my husband lift me in and out of the bathtub, which is a traumatic experience. So... I am pretty much stuck with showers, and a shower bench at that. Try tying one hand and leg with a rope to your body so you can't move, and then attempt to get in the shower. Now, wash. Ha! I've been practicing this for 21 months now, and it's not fun. Still, I manage. What's a Stroke Girl to do? I even shave my legs... very carefullly. Now that takes balance!
     Gettingout of the shower is more terrifying. I have to navigate my "wooden" leg over the bathtub ledge, out on to the floor towel, scoot over on the bench, swing my good leg over, and then get up enough courage to try to stand up - if my left foot doesn't turn inward, make me lose balance and fall! 
     This is more of that spasticity thing, the stiffness. It strikes anytime, especially if I am stressed, or trying to do something. It is neurological, caused by the brain damage from the stroke. The connections from the brain to the muscles are crossed, and over time, the muscles shorten as they contract, making the pain and stiffness worse. Brain cells do not grow back or repair. Once damaged, they are dead. Gone forever. During recovery, the brain tries to find new pathways for some functions, such as mobility of an arm or leg, but there are symptoms that are lifelong, damage that is irreversible.
     By the time I get out of the shower, and roll into my room to get dressed, it is already six o'clock in the morning. I can remember when it used to take me less than 20 minutes to get ready for work, including makeup.

     My husband is a classroom paraprofessional at an alternative school in a large Houston suburban area school district. Basically, he is a teaching assistant, working with at-risk teenagers - gangsters, juvenile delinquents, kids whose lives have been disrupted by divorce, drugs, absentee parents and some teenagers who just can't fit in on their home campus, so they end up at the ALC. It is not a marshmallow job: most teachers and paraprofessionals don't even want to apply for a position because of the intense emotional environment. Situations can escalate quickly without proactive staff members - and my husband is definitely in that category. He is alert to the students, but he also treats them with respect. Consequently, he earns theirs - even gang members who display their "tough" side to other students, have written thank-you notes to "Mr. B" for helping them in some way.
     He has worked there for 12 years. He gets up at 4:30 a.m. every day, starts coffee, cooks is breakfast, makes his lunch, cleans the kitchen, takes out the trash, feeds the cats and any other chore he can manage.
     The man has had three heart attacks - two were in the fall of 2004, just months before my stroke. He has seven arterial stents. He looks great, but let's be realistic. He works hard, and long hours. When he comes home from work, he changes clothes, starts dinner, feeds the dogs (and cats again), feeds the birds, cleans the kitchen - and when needed, goes grocery shopping or to the laundromat.

     Now I have made it out to the living room. Chuck gets my long white cotton tube socks, lifts up my weak, numb left foot onto his lap, stretches out the sock to make it easier to get on my flaccid foot. It's much easier with the right - at least I can flex my foot and push in. Next, the AFO, a plastic brace that velcro's on my left foot/leg to support my ankle and foot, i.e. ankle-foot-orthotic. Last the not-so-beautiful Payless men's velcro athletic shoes: the left is a size 11 to fit the AFO; the right is a size 7. Finally, I am dressed.
     Chuck brings my cup of Starbucks Verona coffee, whole wheat toast and a banana. This is my morning breakfast. I take my thyroid medicine first, before enjoying the 6:30 am meal.
      It is time for him to leave, and my day alone begins. He kisses me goodbye, and I sit in the dark living room, drinking coffee, watching Good Morning America.

     Anxiety sets in before seven o'clock. I am already feeling stiff again, but it is too soon to take more medicine. There is little that can be done to relieve this pain. I don't want botox injections, and I understand that the relief lasts only a couple months before another injection is needed. I am getting a headache. My vision is blurry. Not only do I have left-field cut from the stroke, but my eyeglasses are so out of date, the prescription isn't right for my eyes.

     One thought leads to another. Can't afford new glasses, can't afford to go to the doctor, can't afford to go to the dentist. can't even afford our medicines. Money is so limited, and I feel helpless to solve the problem. Last week, our AC went out - the repairman agreed to hold the check until my SSDI check came. Today, that man's check cleared our account, but the funds weren't there yet! He deposited it early instead of waiting - now that cost us $25, and our electricity payment to be returned, which cost another $50 in fees! We cannot afford that!!! 

     If someone had told me, 10 years, 5 years, 3 years ago - like a palm reader, or fortune teller - that I would be on the verge of losing my house, pinching pennies to buy groceries, pleading for any assistance that I could qualify for (and I do mean pleading, because NOTHING is easily applied for or received)... if I had known, and believed - I wonder what would have been different in my life decisions.
     I worked hard. I worked long hours. I earned good money, and I was able to take care of my family. I thrived on a job well done, enjoyed what I did for a living.
     When I was laid off in January, 2002, I started to evaluate my options. Ultimately, I decided to go back to what I loved doing most: spending my days with children. It was like coming full circle: my original career path was early childhood. I started college in the summer of 2003, at age 48. 
     In August, I interviewed for a teaching assistant position at an elementary school. I looked forward to going to work every day - I had taken a paycut of over $20,000 a year, but I loved seeing those little happy faces, working with children. I attended college at night; by the following spring, I was inducted into Phi Theta Kappa with a 4.0gpa.
     I figured I would be 53 when I graduated, and have my own class. I look younger than my age, and felt healthy - I certainly expected to work until normal retirement age.

     No, I roll into the bedroom, turn on the computer, and start working on bills, websites, and check into my online stroke support message board. In a little while, I'll let Greta in for our morning training routine - but that's for another day.
     Right now, all I can think about is that my left hand is curled up into a little crooked fist, and it might enough time passed that I can take another pill to relieve the spasticity.