April 12, 2003
The “site” of my feeding tube is “tender.” Translation, this hurts. I mean, this gob of plastic is trying to live inside my belly, but not be sewed closed inside. It is sticking outside too. And this is not normal. Several times a day, they “flush” the tube. Great, now I have a Six Flags water park ride going on. Ick. They are happy because I am getting nutrients and stuff.
The area is beyond tender. The nearest point of reference is, remember how it feels when you put your finger inside your belly button and push a bit? It’s that feeling, but weirder and you know that you are touching inside your body too. Not just the outside. Not normal. The bandages are stuck down with the plastic tape. There are two kinds of tape in this hospital. There is a nice soft cloth tape. It moves with your body and breathes and you don’t feel it on your skin. It doesn’t hurt when it is pulled off either. And then there is the plastic tape. I believe it is really Duct Tape, only white and in narrow form. It is stiff and harsh. When I move, the tape stays put and rips skin is in its path. Taking the tape off is equivalent to shaving with a really dull razor. And today, I feel plastic tape. Not going to move much today. Nope.
April 12, 2016
Today I am at school. It is a busy full day as I begin to take back over my class a bit. My wonderful, first ever student teacher’s last day is the 15th. So we are transitioning. Less watching and more doing in my room today. And I am wearing a fancier, slightly more special outfit to school today. After school I get to speak at the Nurses Symposium at St. V’s. I spoke two years ago and I am psyched that they invited me back. Nurses are my audience. Nurses that may have cared for me when I was here in my stroke. The theme this year is “unexpected life events.” Perfect.
Here is what I am going to say and do with them.
Unexpected Life Events 4/12/16
Good afternoon. Thank you so much for having me back to be a part of a day about “unexpected life events.” Advocating for Stroke Awareness, sharing my survivor story and speaking for those stroke survivors who can’t, is a real passion for me.
Today, I have 3 things that I want you to take away with you.
- Let’s spread the FAST campaign of Stroke Signs. 80 percent of strokes are preventable. We have the power to be the change!
- I have the power to tell my story. Hear what Stroke is like from the inside out. And hear what power YOU have in the survivors’ lives. You heal. You Matter! Thank you!
- Just keep an open mind. Be open to the truth that all of life is “unexpected.” Be open to our conversation about the choices we have in our lives. And keep an open mind that our lack of control, is a gift, not a punishment. Believe that I believe.
Start with #1. My stroke is a part of history. It happened. But as we know 80% of strokes are preventable. They never need to happen. I see my neurologist, who you know well, twice a year for botox. Every visit, I ask him if things in Worcester are getting better. Are people learning the signs of a stroke and getting help FAST? Dr. K is not very positive in his response.
I have an idea. A few years ago, I saw a story on the national news about a 3 year old boy who was working with his dad in the back yard. Dad cut himself with a power saw and was bleeding out. The 3 year old knew to call 911 and get help. He saved his dad’s life. As a teacher, I know that kids are the untapped resource to save lives. So, I believe that if we teach kids FAST (Face, Arm, Speech, Time to call 911) then as they are in their homes and neighborhoods and schools and if they see a Stroke Symptom, then they can call 911. And since Time is Brain for the stroke survivor, you do the math. I had my students learn a FAST song set to the YMCA melody. We recorded it and it is on YouTube. https://www.bing.com/videos/search?q=fast+by+elm+park+students&view=detail&mid=A115C86270AB369A4BDCA115C86270AB369A4BDC&FORM=VIRE
They did a great job. But I am working now on recording it again with fewer students and clearer impact. My goal is for the Worcester tv, radio and school email to share the new video. If each teacher could just play the video in his or her classroom, and supersmart kids learned it and brought that knowledge into their lives? We can prevent stroke. (And my idea is local and FREE!) So that is #1 of my agenda today.
Prevent Stroke and kids are the key to getting the word out FAST!
#2 My story. Not all those that have strokes can tell their story. I know stroke from the inside. And I know how you have helped me heal. I can bridge to gap.
On April 4th, 2003, I went to my PCP at Fallon May Street, now Reliant for a check up on my thyroid. And right there, I got hot, I slumped, I slurred, I lost my swallow and I had my STROKE. (my case is now practiced protocol at the office! Legend!)
The nurse came in and got help fast. I remember her hand, strong and soft supporting my side. Dr. S came in. quiet and busy.
I remember the ambulance ride… the EMS man calmly helped me breath and chatted with me, right next to me the whole ride. I think I heard in the ambulance that I was having a stroke. In the ER here at St. V’s – I remember the bay I was in. I got in FAST. Mark, the ER nurse, gave me a suction tube to take the secretions that were choking me. I remember thinking that he was a genius working for God to have that solution.
The doctors and neurologist came in and updated and offered TPA and other things.
I heard them say stroke….I listened and made choices….But Rachel was not there. (I am not sure who was making the choices.) The Rachel I had known was gone that instant. Surreal does not cover it.
I mean………….Stroke didn’t happen to me. I was and still am, a big fan of the Golden Girls. Sophia’s stroke was funny. It gave her a freedom to be honest that I yearned for. But it was TV and Sophia was old. I was not laughing. This was real. And I was only 30 years old.
Stroke happened to my Grandmother…..when she was old and totally reduced her quality of life………….stroke can’t be for me. If stroke was mine, in that moment, it meant that my life was over. If human beings eat, sleep, walk and talk…and I could not eat…… At that time Stroke changed me from Rachel the human
To a non human alien super freak……………….
What and who was I? I certainly didn’t think stroke could be a god given gift. I do now.
From the ER, I was up to ICU. Every beep that night I heard was for me dying, I was sure. I was afraid to move, I think I remember thinking that I might explode or bleed out or rupture….Insane new thoughts. And I never said these thoughts out loud. If I didn’t say STROKE, then I hadn’t had one……right? The nurses of the ICU were my care and comfort. They touched me, saw me, heard me and I knew that at least I wasn’t dead.
But most of my time in the ICU, I was alone. There were walls aside me separating me from other folks who needed INTENSIVE CARE. In my mind, the ICU was for folks who might die. We might not make it. That was our reality. I did not want to shut my eyes and die and disappear. I had no FAITH that I was in safe hands. The human illusion of CONTROL was having a hard time getting right sized.
My minister, my mom and my best friend came to the ICU. My minister massaged my feet. Hands on….I was uncomfortable with her doing that. Stiff upper lip New Englander was not used to this….And yet I craved the touch. It warmed parts of me that I thought were dead. Her touch assured me that I was alive and not a leper. I wanted so much for her to stay….and yet I NEVER asked again for touch or comfort after that.
Soon I was moved to the Neuro Unit. I was seeing medical peeps after medical peeps. The docs and docs in training surrounded my bed at regular intervals. I remember thinking of Jesus in the manger with all the wise men. People came from afar to see the freak. (I was friendly and helpful to them…but that is how I felt.) I read the board for shift change and my new routine was your routine. The nurses set a safety net for me. You were a constant, caring lifeline. I wanted to stay close to you….the only faith I had grew out of feeling I could trust and rely on you.
Farmer Ken, my night nurse and friend from church…brought the challenge of fresh maple syrup in a big jug to my bedside. I hated him and that challenge. Now I see the gift. Mark the er nurse came up to the neuro floor. He took me for walks to the outside. To the spring sky. I craved that fresh air. I felt alive for a few minutes. He did not have to….HE gave me human moments. (Those moments appreciating breathing and sky outside are a part of RACHEL now. I choose that!)
The PEG tube went in as soon as they realized my swallow was not returning at all. And that sealed my fate from human to freak complete with robotic feeding tube. I felt a character on the Jetson’s. The amazing and talented Carole, speech guru at Med City, said 1 technique might save my swallow. (And the only place where I could go inpatient and get it was JCC nursing home! I was 30 and everyone else was old……..it was horrible. I was scared. I was isolated. I was having a massive identity confusing life crisis. And it was all inside my head. There was no one to talk to, nor was I in the habit of considering and sharing thoughts like these. I didn’t know who I was anymore and I didn’t trust my body. I kept all this talk inside me. DPNS (describe) occupied 1 hour a day. The other 23 hours I paced the roof top terrace. I was obsessed with sky and fresh air. I had never truly appreciated those things before being in the hospital for 2 1/2 weeks. Thinking back, this was the first thing I was grateful for post stroke. (That and the first shower! Wow was that a luxury! But I was afraid that the PEG tube would take on H2O and I would drown. I taped so much saran wrap over that sucker!) It was report card time, so my friend brought my report cards and I got them done in the home. I remember that! But those brief incidents only spotted the days. And so I signed out against medical advice, the day before Easter and went home alone to my apartment. Not bright!
Carole, my speech guru and Dr. K, my neurologist sent from heaven, worked hard. And so did I. I continued the therapy and eventually got my swallow back about 9 weeks months later. My body operated ok. New stroke symptoms in new parts of my body popped up and then disappeared without warning. One particular thing that has stayed with me and I work on still were spasmodic muscles in my face that made me sound slurred, slowed my speech to a snail’s pace, and I thought I looked like a super freak. It could improve, but I couldn’t get passed the shock and do the work or accept that I might look and sound different than I had on April 2nd! Many times a day I stood in front of the mirror and looked at my pupils. Were they even? Was it going to happen again?
Over 9 months I did heal, in many ways physically. But spiritually and emotionally, I was increasingly deathly ill. I did not want to live in the changed body, did not want to accept the changes (like no sense of hot or cold temps or pain sensation on the right side of my body. I had to retrain for cooking and bathing to check heat levels with my left hand.! During winter the cold in the right side sets in deep. I can’t regulate my body heat. Even now, I deny the stroke symptoms and ignore my body….it doesn’t work. But then, I resented the change and saw only deficits, not opportunities. I spent a lot of time advocating for my rights and services. I filed something like 14 grievances with my HMO in the first 8 months. I had to fight for my rights. It felt good to be doing something and I remember realizing then that so many stroke survivors aren’t able to do what I did to get what I needed. (my swallow alone cost $1,000,000 to get back! I saw the invoices. HONEST!) One time, I couldn’t get an answer from the HMO. No one would talk to me. Hours on the phone. So, I got in my car, drove to the HMO administration offices and told them that I would wait until someone heard and saw me.
I lived, trying to die, a couple of very dark years. I would not accept the way I was changed. Reality stunk! And that was it! My family, my friends, my job, community did not understand the changes any more than I did! I was ISOLATED! I was Angry. I sat in isolation for a couple years after my stroke. I sat in the anger at how I had lost control and how I had changed. I cowered in the corner of life, locked in fear….Hopeless.
But I did not die!
And then Things Changed. I changed. I had always asked “Why did I have a stroke, why me? And why didn’t I just die rather than live like this?” One day the questions changed to “why not me have a stroke? And Why was I lucky enough to have it in the doc’s office and receive immediate lifesaving care? And what was I saved for? What can I give to the world?” Since that day, and I am not sure what day it was or what inspired the change. I guess I went so low, didn’t die, and I had nowhere to go but up!
I teach full time, sixth grade. I have a different set of life principles that the kids seem to really respond to. It is nearing the end of my 20th year teaching. I do need an assistant in the classroom to help me. But I have it and accept the help. (Honestly, how does one person do my job alone?) My handwriting stinks and that is not good for a teacher. So the city provided me with a laptop and a printer. They invested in me and I believe I am a good investment now. Honestly, the kids are my heroes and I tell them so. My students have a very diverse and challenging experience. Most do not have the gift of a safe and innocent childhood. Their capacity to grow and learn and love with so many direct obstacles is a daily inspiration to me. I can see them clearly now. I do have other passions too. I bake and eventually want to do it full time. I am blessed with a husband and son poststroke. Being open to the best man I know, my husband is a gift of my stroke. Being open to what life has to offer, something stroke survivors learn at the exact moment of their stroke. We know we are not in control. Life can change in a heartbeat. And if you can move beyond the anger and fear of that, you can be open to the best in life. My pregnancy was also a total surprise. Talk about an unexpected life event. But we are so grateful.
You, on the front lines, were the first to meet the New Rachel. You didn’t know me before. And I was brand new from the moment of my stroke on. Stroke took my humanity. You gave it back. Your touch,comfort,care….just saying my name.
Here is where I paint a word bubble over my head like in a cartoon and fill ya in on this stroke head______________
(Inside of the stroke patient is a survivor. I believe that we are the strongest, most resilient folks. We are forced to restart our entire lives and beings. Our bedrock is ripped out from under us and we have to begin again. Everything,inside and out of our bodies and spirits, changes. We are face to face with a new self. And we have to accept that. We have to grieve the death of that person, of that sense of stability. Compound that with the fact that, in the early days out from our stroke, we are terrorized. We do not trust our bodies. They are not under our control and we KNOW it. And all of you caring professionals are our life lines and our security. You make us feel human again. Know that!)
And this all bring us to #3, perhaps the most important. So now I need you. I gave you a paper with 7 things to fill in. On the back of that paper are the words to one verse of a song by OK GO. It is a song and video recommended to me by the mom of one of my son’s friends. I learn the best things at the school fence waiting for school to let out! “Upside down and Inside out is the song.” I’d like to show you one part. http://www.vevo.com/watch/ok-go/Upside-Down-Inside-Out/QM4TM1600002 The whole song rocks. But the verse I want to attend to is from 1:07 to 1:30. The lines are “so when you met the new you, were you scared, were you cold, were you kind? Yeah when you met the new you, did someone die inside?” That hit me hard. Often what I want to explain, I hear in a line of music, or a riff on the Golden Girls. And here is a great way to look at stroke, at unexpected life events. YOU MEET THE NEW YOU IN THESE MOMENTS, BECAUSE OF THESE UNEXPECTED EVENTS. IT HAPPENS AND HOW DO YOU REACT?
#1 asked you to fill in the blanks with two words, two names that you have for yourself.
I am a ___________ and a ____________.
Would anyone share what they wrote?
Be open to other names.
#2 said Name 3 activities that you loved to Do when you were a child.
Would anyone share? Consider loving new activities.
#3 Name 3 things that happened when you were a child that you had no control over.
Would anyone share what they wrote? Know that you made it through those times. But most likely, not alone. You had help. Be open to those that help you through tough times. They are everywhere.
#4 Name 3 things you love doing today. Please share those things. Spend more time and energy on those things. Be open to following your smile.
#5 Name 3 things you’d LOVE to do, but don’t know or haven’t tried.
Who would like to be brave and share? Be open to the possibility that you WILL try them. SOON. And know that you will be safe and taught well by new friends. Believe that I believe.
#6 At what age are you too old to learn a complicated new task? Can I hear the ages please?
You are never too old. If you wrote a number, cross it out and write that you never stop learning and growing!
#7 Name 3 things today that happened that you have no control over. Please share out the small things, like traffic and the big things, that make ya cringe! Thank you for being brave, opening your mouth. You are getting right sized. Be open to your very small, unimportant place in the grand scheme of things. Be open to the truth, you mean everything to somebody. Your smallest action, word or small means everything to someone. You are that important! You are to me.
Now I get to go see Jason have his first class as a Blue Belt.
Life is good.