I was very grateful to hear an interview with you on NPR sometime ago and then again on Oprah's Soul series. Your story has inspired me to write some of mine. I had recently graduated with an undergrad in psychology (highly intrigued by neuroscience)and then worked for neurosurgeons for two years prior to my first bleed from a Cavernous Angioma in my cerebellum (at my brain stem) in 2001. It was two days following gall bladder removal. Although the bleed was located in the right side of my cerebellum, I can relate intimately with your story of a left hemisphere bleed. It was not treated with surgery that time but with steroids for the intense swelling in my brain. They had not diagnosed it as a cav mal until after the pathology report. During the next 30-40 days I practiced walking, talking and writing again which all came back. After another 6 months of debilitating migraines which left me in bed for weeks, I had another bleed (it was theorized that I had probably had 2 more bleeds) and they finally did surgery. During that time, my brain was silenced and there was no longer a choice to partake in quiet time. It was the only choice I had so I began to practice Zen meditation and read several books on Eastern philosophy when it didn't hurt to read... and think. If it hurt too badly, I chose books on tape, anything to keep the positive energy flowing. I knew very starkly that it was all I had. I briefly felt "well" a few months later and then began to have increasingly horrendous migraines. They remained off and on with the longest continuous headache being just over a year, until I had another bleed in 2008. I was immediately taken to surgery where Dr. Spetzler performed a miracle and gave me my life back. He removed the cav mal within a few millimeters of my brain stem and I was finally rid of the cav mal. While there was a considerable amount of emotionality involved in my experience, I was still quite fascinated by my brain having just enough knowledge about the brain to be dangerous. I was able to see the dramatic affects of two different circumstances (from my immediate supports to the medical staff) around my recoveries from each surgery. To further define the differences, I had had a partial hysterectomy 9 months prior to the first brain surgery and a full removal of the uterus one month prior to the second brain surgery(in 2008). I had a far superior recovery the second time around. I felt that you were telling my story with the safistication I haven't known how to express. The differences were not actually with the brain traumas but how they were dealt with. I too had an indescribable enlightening experience. It was so beautiful and peaceful that I could sense my true place in, through and with the entire world. The conundrum came later with my supports. I unfortunately was in a very young marriage at the time and my husband was fearful, resentful and in general not a positive energy. He asked for a divorce while I was still getting my bearings of "being in the world again," which very unfortunately led me into a deep depression. For several months I went in and out of this paradox... having a beautiful awakening to a truth that I could feel at the cellular level and fighting with the knowledge that I had to be a part of the reality of life. As you had talked about on Oprah's Soul series, that is the point that I chose to recover. I thoroughly enjoyed my enlightened experience but realized that I had to "participate." Allowing my "brain trauma" experience drive my hope for a new future was my only chance at regaining a foothold in society. Ultimately, I am truly grateful for my experience and feel so genuinely blessed to be here today. I am also humbled by each of those who have survived, triumphed and/or learned from other's experiences.
in Nov 2008 I suffered from a hemorrhage in my pons due to a cavernous hemangioma. Through my siblings care and love I am doing much better. I was an RN manager at a surgery center and have not yet returned to my profession. I still suffer bouts of equilibrium disturbances, facial numbness and severe ear problems.Any increase in stress causs me difficulty with my speech. Reading your story was both inspirational and difficult. I relived my stroke but also found gratitude for those who cared for me and gave me unconditional love. It was difficult reliving those first moments, most of which I had forgtten until I read your book. I am hoping one day I will be able to afford others the same insight and provide the tender care that is necessary to regain a sense of ones self.
I would have LOVED reading this book years ago. I remember the first time I held a human brain and marveled at how such a beautiful organ's function could be so difficult for me to remember! I so appreciate the clarity with which you describe the brain and, even more importantly, your experiences.
I could not help comparing components of your right brain experience with how I experienced my spinal cord injury. I realize that my "out of body" observations that everything would be okay were due to a heafty flood of endorphins being dumped into my system, but I could identify so closely with your description of being at peace and part of a larger whole. It was intoxicating. As a nurse, my injury and the story of your stroke provided comfort for me in an unexpected way.
I was always disturbed that we avoided administering analgesics until a full neurological workup was completed and hemodynamic stability was assured in the emergency department and intensive care. All I could see was the pain and suffering from obvious and not so obvious wounding. Our bodies are amazingly designed. Even though you experienced horrific headaches and body pain and I described in great detail the pain I was having from my broken neck and fractured scapula (documented in my records - I have no memory of the pain), our brains provided a comfort that our caregivers could not see.
I thank you for this! Oh, by the way, I call my "whining" times "pity parties" and schedule them on an as needed basis, perhaps once every two to four weeks. I love that you put into words the "90 second rule". I say to myself "this too will pass"...and it does!
We are discussing your book at my book club this month. I'm anxious to hear what my friends have to say! My best to you always! Love %26 Peace.
Stroke of Insight is a fascinating book. The medical experience you talk about in chapter seven, I can relate to. Most medical personal, especially EMT'S need to remember this. If they would speak slowly and very calmly, things would move along a lot better. I can go through similar experince recovering from coplex-partial seizures. Fortunalty, the medicine I take now controls them, along with the correct amount of sleep. The stroke damaged my left hemisphere. So almost all my strength seems to be in my right hemisphere. The roomate you talked about in chapter ten sounds like she was hooked up to an EEG test. I have had several of these in my life. If they do actually show anthing, it is always in the left hemisphere. Although I am very fortunate to have really good doctors, I would recomend they read this book.
My stroke occurred last Friday (March 26,2010) morning, I woke up just as normal around 6:20am and prepared normal for work. I felt just fine and there wasn't anything out of the ordinary. Then I was driving to work and called my mom(who was in Florida at the time) to let her know that my grandma had an application in mail to renew for Medicaid benefits. I couldn't think of the term "power of attorney" and became very frustrated. My mom said "Evelyn, it's no big deal you can think of it". My mom knew what I meant anyway, well I was really quiet then I just blurted out "Mom, I can't talk". My mom said okay and let me go off the phone. Well, I grabbed my workout bag and walked across the parking lot to work. I got on the elevator and did start to feel really odd, but no pain what so ever. I put my bags down and walked directly into my boss's office and sat down right in front of him. My boss Brandon, thought I was going to discuss the NCAA brackets but I could only just look at him. Brandon, thought I was upset and may be starting to cry about something perhaps difficult for me to talk about. Which was not the case, I just forced the final words "I can't talk". So I asked for a pen and paper and all I could write was "take my keys from me". Brandon called Peggy and she beat the ambulance to my office. I laid down on the office desk floor because I felt light headed and just started to sweat profusely. Apparently, at that time in the ambulance I was in the process of having a stroke and I had no clue what was transpiring. I just turned 40yrs old and was supposedly a picture of health. I was so damn lucky to be delivered to the emergency room within 45 minutes of the stroke occurring. My world has been turned upside down as I have suffered thru a Hemorrhagic stroke. It results from a weakened vessel that ruptures and bleeds into the surrounding brain. The type of stroke that I experienced accounts for about 13 percent of stroke cases. As a result, I have "Aphasia" which is a language disorder that affects the ability to communicate. It means Broca's(Expressive) Asphasia which means that sometimes I want to say something but I can't find the right words I have already improved so much. My brain is the same and I can write intelligently BUT my speech can be difficult every now and then. I am still in the hospital. Among all the tests I am undergoing, yesterday was a blood test called a "d dimer" test which looks for blood clots in the lungs. The results were slightly elevated. So any minute now I am going to be taken for a "CT" of lungs to ensure no blood clots. I am now on day 7 here in St. Johns Hospital. I started out in intensive care the 1st couple of days, but now I am in "intermediate care". Yesterday, I had more blood tests done yesterday afternoon. One was called a "D Dimer" blood test which identifies clots in the lungs. The results came back "slightly elevated". So this morning(Wed 3-31-2010), they took me to a "ct of lungs" to ensure no blood clots. The "ct of lungs" is when they lay me flat and run a dye through my "iv" that goes through my lungs to be x-rayed for clots. I have not been notified yet of those results yet. Tomorrow I am to report to the hospital to drink a serum and then they will administer a shot an hour after the drink. Then I report the following day for a "mri' of the abdomen to detect tumors that could have caused the stroke. I am now taking a handful of many varieties of medications which seem to have successfully regulated my high blood pressure("bp"=blood pressure). I became a bit frustrated asking why they waited so long to prescribe bp medicines. Asking why did they allow me to suffer through these several headaches and allowing my bp to soar throughout the weekend. Well, there is a logic explanation because the doctors did not want take control of my bp as it was so high when I had experienced the stroke. Because my bp had been so high(bp=242/120 during the episode on Fri a.m. and then during the weekend, it would have been a total shock to my system. So the doctors have slowly began control of my bp and let the medications accumulate to my system. Another test I am being scheduled for is called a "conventional angiogram" where they will go through the a vein and run a dye up through the blood vessels in my brain. The neuro-surgeons want to ensure that there are not any congential brain vessels with disease. I AM TYPING MY STORY IN THE EVENT THAT JILL BOLTE MAY HAVE SOME SUGGESTIONS AS TO FURTHER TESTS THAT MAY LEAD TO THE CAUSE OF THE STROKE. MY DOCTORS ARE NOT ONLY BAFFLED BUT ALSO CONCERNED FOR FEAR A FUTURE STROKE MAY EVOLVED IF NOT CAUGHT BEFORE? THANK YOU ADVANCE FOR MY CONSIDERATION, EVELYN D. BLACKBURN BY THE WAY I HAVE POSTED MY VIDEO SHOWING ON YOU TUBE WHICH IS A 6 MINUTE INTERVIEW SHOWING MY SPEECH ABOUT 10HRS AFTER THE STROKE EARLIER IN THE MORNING. JUST GO TO YOUTUBE AND MY USER NAME IS "EBLACKBURN1" TITLED MY STROKE OF INSIGHT:)
Thank you so much for this book. I am in my last semester of graduate school in Speech-Language Pathology. I work with many people who have had strokes or traumatic brain injury and your book has brought me an incredible amount of insight into their proper care. It also helped me to see (rather glaringly) that I am a true left-brainer! I am trying to spend more time on the right, but it just does not come naturally! So, as a caregiver and as a left-brainer, I thank you!
As a RN for 8 years and recently experiencing the loss of a loved one from a massive hemmorhagic stroke, I have now changed my entire thinking and treatment towards all patients. As a mother of 4, I have also brought this insight to my household in hopes that my right brain can provide some compassion and patients when I feel like I am too busy or stressed. I will pass your book on to other nurses work with in hopes they, too, will think differently in how they treat patients, not just neurologically impaired ones.
My dear friend (age 47) was found on the floor of her home barely conscious on January 28, 2010.We were later informed she had suffered an AVM brain bleed. She was paralyzed on her right side and unable to speak. Drs. at MGH operated and placed a probe in her brain that would monitor pressure. She spent 13 days in neuro ICU. She was then moved to a regular room.Now she is in Spaulding Rehab making remarkable recovery.She can speak again and is bravely working on all aspects of recovery. I thank you for your book. It is giving me insight into what she is going through. It is showing me how to relate to her and help her to recover.
This book has given me rich insight into my son's brain disorder. His whole life, post diagnosis at 2, has been a search for what could have gone wrong and a possible treatment to help reverse the damage. Now at 12, with still no expressive language, the search has mellowed considerably and the amazement at what his brain does grows. I initially picked up the book after hearing Dr.Taylor on NPR saying the most important insight from her stroke was the knowledge that individuals with brain injuries have heightened sensitivity to the energy of others who come near them. This idea was presented to us early on in our journey with Bowen, and we have spent most of our energy protecting him from destructive attitudes and beliefs from 'professionals' we came in contact with, ultimately deciding to implement a program of acceptance and love. Today Bowen's greatest strength is his love for us and others. He is comfortable in his skin and well adjusted to the world, even though he cannot talk. From the book I surmise that his right brain has dominated his existence for a long time, and his injured left brain is a source of continual challenge for him. We continue to request words and academic progress from him, which he delivers with great effort and little progress. We focus on his intrinsic motivations, which ultimately include gross motor elements, and keep happy during the process, while we persist in our requests. Sometimes a meltdown results due to the difficulty his brain is having, but if we stay happy and supportive he will come through it, and hopefully stretch his brain. We continue to face challenges as a family---alchoholism, rageism, among the adults, often spilling over to the children. Our recovery has been ongoing and more successful lately. Funny how we can not yet apply what we have given to Bowen, to ourselves and each other. That is our focus today, and I have gotten new insights to better that journey as well. The numbing of the left brain artificially is widespread, and I am grateful for the knowledge of why that is happening. I am now imagining a garden and weeds, instead of unknown or inherent forses. Thankyou for your great gift to me. Sincerely, Betty
I read your book "My Stroke of Insight" with great interest. I, too, am a Harvard neuroscientist, having worked as a neurosurgeon at the Brigham %26 Women's and Childrens' Hospitals 1988-2001. AND, I suffered a brain catastrophe, in November, 2008. For reasons that remain obscure even now, I developed fulminant E. coli meningitis in the early morning hours of November 10 and was deep in coma within 3 hours. I was so sick, even on triple antibiotics from early on, that my CSF glucose went down to 1 mg/dl. Not a good sign. By the 6th day in coma, when I was showing no signs of turning around, my physicians at Lynchburg General Hospital in Virginia were laying lots of black crepe with my wife and 2 sons. On the morning of the 7th day, Sunday, November 16, I started to come around. Within 2 days, I was out of the ICU. Within 9, I was home. I was blessed with a complete recovery over the next few months, and have written a lot of the experience up in the hopes of providing a resource to other neuroscientists. My story has not turned into the cut and dried scientific analysis that I originally intended, because of some inexplicable recollections from deep within coma. I would like to share those with you, and gain your insight. There are certain specific similarities, as well as specific differences, between our individual brain catastrophes that I believe will lead to a fuller understanding of both. Would you be willing to read my story, and share your observations? I look forward to hearing back from you.
Immediately after hearing a radio interview with Dr. Jill, I bought and read the book and couldn't absorb it fast enough. My enthusiasm for the book's insights has encouraged at least one fellow bus commuter to purchase the book for our 45-minute bus ride.
I have one question: Does a stroke or other damage to the brain affect the original level of IQ? In the early part of the book Dr. Pat described herself as bright. But reading her perceptions and finely detailed descriptions (physically and personality) lead me to believe her IQ did not drop a point. Another impression is that Dr. Pat's higher IQ gave her a head-start on an orderly, well-guided and efficient recovery. If IQ is determined in the DNA, does that mean the newly mended brain cells, retain the original capacity to learn?
five years of post stoke syndrome, depression, dismissed from social world.
Im 60 years old, still have not gone to a stroke recovery group, and am now in my seventh nursing/assisted living with the elderly and dying and defnitely no my peers. I lost seventy percent of my vision and am on a small social security, and my worst nightmare has happened, ive moved to be close to my daughter and she is nowhere in sight except in a abusive relationship. Los Angeles is not bus friendly, and I cant seem to get over the hump or out of bed to move forward, I was at the top of my profession, and in five years have lost almost everyone and everything that defined and entertained and made me feel like i knew who I was. Im almost to the edge of wanting to end it all. Im just holding out to hope that tomorrow will be better and some angel will come forth and lead me out of the abyss. thank you, David
I'm sorry if this seems trivial but is there some way to use this knowledge about the right and left hemispheres to better heal a broken heart? I am pushing past a broken relationship and trying hard to access my right hemisphere but it seems my left creeps up on me every time and I tire of the pain.
In March of 2001 I suffered a massive sub-dural hemorrhage on the way to work--horrible pain behind my right eye. I vomited and passed out. I was quickly (correctly) diagnosed and taken to the Excellent neurosurgery unit of Vancouver General Hospital. Imagine not knowing you were in a helicopter! Next day I woke with my head in a turban and no pain at all. JUST BEFORE I woke I clearly remember feeling intense comfort and warmth. Out of a cloud of intense light I saw my (deceased) mother's face calmly explaining to me that I had had a brain injury, but that it had been repaired and not to worry, I would be just fine! Say what? Thanks Mom! Thus began one to the most astounding periods of my life. After three WEEKS in the ICU I crept home and with the continuing loving care of my dear wife Maggie I began to try to put my life back together. This I did, to a large extent, (long story short) although the "events of 911" were a major emotional setback. You see I am no longer the "cool" guy I used to be.In university they called me "Hollywood" but now my heart is on my sleeve. When I encounter beauty (an hourly occurrence) I will probably start blubbering. Now I can sit in the garden and rejoice in the sights, smells and sounds like never before. Women's voices singing often cause me to embarrass myself. Maybe everyone is tired of hearing me try to describe the emotional changes I have experienced---there is tremendous pressure to be completely recovered and back to "Normal" what ever THAT is! What they can't understand is that although I look and function more or less normally (compared to before) my world has changed profoundly in ways I can't describe. So I mostly have stopped trying, and just roll with the Bliss! Then yesterday I heard DR.Jill in a CBC Radio interview and it seemed to me that everything she said was echoing inside my head. I became so overwhelmed I had to pull the car over so I could listen safely. I haven't even READ the book yet but I know I will love it. I have been moving towards a renovated world view on my own, but this coaching from all of you comes at a time when I Really need it! THANK YOU!!!!!Love is ALL and NOTHING is insurmountable. The New Nick.
Thank you so much for sharing your stroke of insight. Really, your stroke of insights. Your book has been very helpful for me.
There is one thing I would like your reflections on. It comes down to, how do you see your "self?" On page 141 your talk about having "more say" about which character (hemisphere) dominates your perspective at any given moment. Who or what is this volitional "?" awareness that has more say? Is it your higher cortical cells that pay attention to what's going on inside your limbic system? p. 154. Are you these higher cortical cells? Who is this presence? I think my question ultimately comes down to "who or what is the gardener?" How do you see you, Jill, and you alone, choosing who and how you want to be in the world? Are you the marvelous cells and their neurotransmitters or are they at your s
Four years ago, while on a business trip to Montreal, I had a ruptured brain aneurysm at the boarding gate. I was 48, dont remember any symptoms, though I'd had headaches for years. It was on my right side, I collapsed and luckily, bled from my right ear, letting security know that it was a medical emergency (I was travelling on my own). I was rushed to a hospital, had brain surgery to clip it the next day and was not expected to make it. I was in ICU for 6 weeks, in Neurological Rehab for 6 months (had to re-learn how to walk and do everything) and with a Nurse at home for six more months, as I couldn't stand up for over a year. I read your book and can't believe how much you remember; I remember almost nothing.
Four years later, I have made a complete recovery, with no lasting effects from the stroke. I'm in the 5% that makes a complete recovery and consider myself so very lucky.