Living Life To Its Fullest

2 February 2001

Oh my goodness. I don’t even know how to begin. I think I will just start! I am Shirley and I live in a community very close to Boston, Massachusetts. Ruptured Aneurysm, Grade IV, February 2, 2000. Me. Exactly one year ago today. I had gotten up and was getting ready for work. I must say though, that it isn’t really work for me at a regular job. I am an 8th grade U.S. History teacher and it is part of my life, part of who I am, part of me. Anyway, I had gotten up and was watching the news before I took my shower and then it happened. It is important to tell you something before I continue. I didn’t, and still don’t, remember anything for five weeks including the day before I got sick. Now that is strange. I don’t even remember my daughter and I having dinner the night before my aneurysm. Thankfully though, my husband, Nelson, and my daughter, Melanie have told me so much. And I don’t have any recollection from the day before it happened until approximately March 5th. So anyway, that Wednesday came and I thought I was getting ready for work but I am told that I was screaming “My head is killing me” and then I started vomiting and then I became unconscious.

Nelson and Melanie called 911 and the ambulance came and took me to the local hospital. The hospital, for some reason, did a cat scan and they came to talk with Nelson. They told Nelson that this was a life threatening situation and my chance of surviving was slim. There was so much blood in my head that the blood was moving my brain to the right side. Unbelievable! At this point, Nelson told them to send me to Mass General and Dr. Ogilvy, Director of the Cerebrovascular Surgery was ready for me. Thank You, God.

Now Dr. Ogilvy had something to do with me being alive. Dr. Ogilvy has told me that I was a grade IV subarachnoid hemorrhage from an MCA aneurysm. He clipped the aneurysm and took the bones, you know my skull, on my left side of my head and put it in my abdomen. Unbelievable! I was in the ICU for 3 weeks, a regular room for 3 days, then went to the re-hab before I was going to the nursing home for quite awhile. You see, the doctors and the nurses felt that I would be basically a vegetable, not much of a person, but alive just the same. They felt I would be living at the nursing home for maybe the rest of my life.

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Well, I got to the rehab, which I don’t remember until about March 5th and then something happened. You see, my husband, my daughter, my mom and dad, and my sister had a tremendous amount of faith and optimism which totally changed the worst time of my life. (Let’s not talk about the diapers or other disgusting parts of my early life at rehab! ) See, about that early time in March, my brain decided to think. If you have a heart attack or a similar situation your brain is still the same way it always was. But with an operation in your brain, that affects everything in your body. It effects your nervous systems, intelligence reasoning, emotional and logical thinking, physical abilities, etc. Before my brain decided to think I would vomit anywhere and/or anytime, I would just lie in my bed, I would basically do nothing. Then my brain started to think. I was riding a bike, dancing, skipping, jumping jacks by March 20th. Instead of going to the nursery home at the end of 6 weeks I was going Home. April 1st. Home.

Sure there were problems. The first week home Nelson would take me for walks down our street and I would wear my metal helmet on my head. My head was quite funny looking because the bones, you know the skull, on my left side were still in my abdomen, and my head was quite indented. But then, the next week, I went back to the hospital and had the bones from my abdomen go back to my head. And, believe it or not, this is much better than metal plates taking the place of your own bones. Unbelievable, I know. And I couldn’t talk well at all. Talking was and still is my life. I mean I talk alot, morning, afternoon, evening. I would talk to anybody about anything! Still do! But the difference then was my brain thought I was a kid, a great kid no less, but still just a kid. I could not talk well at all. But my brain allowed me to feel like I was normal being a kid. Even walking down our street. It never occurred to me that this metal helmet was weird. It seemed normal. I seemed normal. I mean, I actually went to my school, June 7th, to see my students to say “I am sooo sorry” and I couldn’t say many words, words like perfect or wonderful, etc, but I never thought this was bad or awful or anything like that. A kid would think this was fine. And this was one of my saving grace. My brain let me grow up slowly and gave me the time I needed. It is my miraculous recovery. And my husband is part of my miraculous life.

Other things that have been fabulous. Of course my husband. I can only talk very little about Nelson to other people because all I do when I talk about him is cry. Wonderful and warm and he loves me type of crying. I cry for joy. He loves me. But people have a difficult time understanding that crying can be so glorious. Because of Nelson I am still alive. He had everything to do with me being here today. Our daughter was much like a 10 year old kid and then I got sick. She immediately became an adult and helped with everything. After I had been home for a while she allowed herself to go back to being an almost perfect 11 year old kid, not a serious adult. My mom and dad came every day to the hospital, to the rehab , and to my home. Now they phone me 2 or 3 times every week. My sister listens to what I have to say now and even back when I couldn’t talk very well at all she totally listened to me then. Nelson went to his job the day after my aneurysm was clipped and asked to be laid off. He had always worked at night and Melanie and I were always together but now I wasn’t there and he wouldn’t leave Melanie alone. He needed to be home with her. But his boss, Dawson, wouldn’t let Nelson be laid off. Instead, Dawson gave Nelson a pay check every week, every single week, for 3 months. Unbelievable. My principal, Mr. Moran, kept me at 100% through August 2000. I think that Mr. Moran admires me so much as a teacher that he wants me back September 2001. And this is just the beginning. People, whom I don’t know well, have been helpful and caring. People I had never met before I got ill have been kind and gentle.

I have also determined how my life will be by 02-02-02. How will my physical body be? My right side, the whole right side, from my head all the way to the bottom of my foot, will never do anything by themselves. I don’t feel anything, and I never will. For example, I was cooking and I burned my right arm but I never knew it until somebody told me my arm was burned, days later. I never felt it. Even sometimes, when I am tired, my right side doesn’t walk very well at all. It even looks rather humorous. My right eye? I don’t see anything on the right perceptual, the right side. I have to make sure that I move my head to the right side so I will see everything. But you know what? So what. My brain – What I feel and think, my emotional and logical mind – My brain has let me evolve and I am almost back to normal. (Normal? Ha Ha) Not quite to 100% but probably 90% now, maybe 80% when I am fatigued. Now the chances of me going full circle are excellent. My life is the best it has ever been. My life, close to perfect.

A patient s/p grade IV. Me. With grade IV, only one of four will live and live well. One of four live! Three of four die! I lived and thankfully my optimistic, positive attitude (which I’ve had for a very long time) helped me survive. Have I said anything about my stubbornness? Living life and the best life I’ve ever had. My Husband, My Daughter, Me. We laugh (a lot!), we love, we hug, we listen, we take the time. Living life to its fullest. I treasure every minute of every day. Thank You, God. Thank You.

Update: 30 January 2005

Hi and Hello and yes it has been awhile since I have updated my narrative. Please know though, that I read your stories, absolutely, everyday and I learn so much.

Now my story….. Living Life to its Fullness. I wrote my narrative one year after I got sick. My life February 2, 2000, 02-02-00. Grade IV ruptured aneurysm. My life then, and for quite awhile, I thought everything was perfect. Everything, everybody, me, perfect. Guess what? Life is never “perfect” for any length of time. And the good news is my mind allowed my brain to grow up extremely slow, much like a turtle (haha) and when I finally saw the light on my marblehead I was able to see “Life” Life As It Is. And yes, there has been some really lousy parts of it.

Before my aneurysm I was a Teacher. I loved teaching. I loved spending time with my eighth graders. Then I got sick. And a few months later I was told by my former school administrator that I was one of the best teachers they have ever had. I would go to visit the people at school periodically to say “Hi”. Different people would tell me I was “The A+ Teacher” and even when they informed me that I was going to be laid off, just for one year, they told me that I would be rehired in a heartbeat. But then, all of a sudden, for no apparent reason, nobody, no ifs ands or buts, nobody would talk to me. For a while, I would go to the school but they had no time to chat. I would try to talk with the principal but he was in a meeting, or he wasn’t in the school, or he wasn’t there, or… I wrote letters to ask why but nobody would write me back, nor would I get a phone call. If they saw me, whether it be a principal, or school committee members, or colleagues, they would NOT talk to me. They used to love me and now they don’t. And I still don’t understand why.

You know the bigger than life question Ñ Why? Perhaps the answer to my question Ñ why don’t they talk to me and my answer Ñ they don’t because I had an aneurysm, a brain injury, and therefore, I must be stupid. Am I stupid? NO. But, sometimes, my emotions see it their way. Thankfully though, my intelligence takes over, but there are moments that I think I should just run as fast as I can from the dark parts of my aneurysm life. And I still have the question. Why? Before I got sick, my teaching life was almost perfect. Now, I might never teach again. And there is almost a whole town that, even 5 years later, refuses to talk with me. My family says it is time to move on and yes, I should forget about the whole thing, but my heart, yes my heart, still breaks.

I now have grand mal seizures. I do not have them frequently, but still just the same. I am usually out jogging (and jogging itself is one of the positive results of my aneurysm) and all of a sudden I know something is wrong. I slow down, then I stop, then I lay down, and (I have that 30 second aura)…… then a grand mal seizure. The ambulances come but the EMTs don’t take the time to talk to the patient, they talk to each other. The doctors, the nurses, most at hospitals don’t basically help with the emotions of the patients. My attitude about neuro doctors, is they think, and I am sorry I am not supposed to say this, but they think they are god (lower case g for a reason). They think they are better than everybody else, especially us, the patients. We are the Patients. We matter. Without us, doctors would not have a job, they therefore would not get a pay check, and they could not have so much more money than everybody else. Yes we need doctors, but the doctors need us too.

Not too long ago, my new primary (yes I moved but that part of the story soon) was concerned because I am now having mini seizures too. He wanted me to go to meet a new neuro doctor. Of course this patient had to wait months to see the neuro doctor, and then when the patient came to her appointment on time the doctor made her wait, once again. Then the doctor walks into a room, her eyes from my head to my feet, and says roughly “follow me” and then it starts. “Why didn’t you bring your 2 prescription bottles” I thought that bringing the prescription paperwork was sufficient and it was obvious that there was no humor in her eyes. “And why did you have a grade IV aneurysm?” Well here I get crazy in the fact that my mother had unruptured aneurysms a few years prior to my aneurysm and her neuro doctor told her at their first appointment, “Well it could run in the family, but it is not necessarily hereditary ….” and the doctor said it was NOT important to have her children go for tests. Two years later, and I have a grade IV aneurysm, you know 3 out of 4 patients die immediately and should that grade IV patient survive, yes me, they only have a 25% chance of being (yes my funny word) normal.

When I told this neuro doctor about my recent life and my reason for being here she had no motivation to connect with me. And it would have been easier if that was all but now, this brain aneurysm survivor, who still has headaches, who doesn’t talk perfectly (and what does the word perfect mean?) all the time, who now has grand mal seizures, who is partially blind, who has no sensation on the entire right side, who sort of falls down here and there, etc, etc, etc, but now I am also having mini seizures and what did she say, “And why don’t you just lay down during a mini seizure so that will cause you to have a grand mal because I don’t understand what you are talking about” My response. Doctor, have you had just one tiny seizure? Have you had just a little aneurysm? Do you have any life experience of any of these? “Well no but I am a doctor” And her heart wasn’t there so I stood up and walked out. I walked out. I felt that was my only option. She cares for herself but she did not care for me. So I walked out. Yes, I am probably too strong and maybe in another 5 years I might get back to be an easier patient but not right now. And the smart news is that I have subsequently met another neuro doctor who might help with my grand mal (he has me up to 800 mg of Tegretol a day) and mini seizures.

And the good news is some doctors do care. I won’t get into the specifics, this could run into many pages, but I met with my new eye doctor, and we had a conversation. That day I heard two words out of this doctor’s mouth. Those words – brain damaged – and even writing my up-date, right now I feel like banging my head against the wall – brain damaged – what, will my brain, my life be returned to Lord and Taylor or maybe Walmart – damaged means my brain is worthless, my life means nothing. Boy, sometimes life is not easy but this doctor looked at me, eye to eye, and said “Gee I’m sorry. I didn’t hear those words your way but now I do and I won’t say those words ever.” This doctor cared about his patient. He wanted to connect. That afternoon this man’s heart, this doctor’s emotions, met mine and then I was able to say “Thanks God”.

And even watching t.v. allows a connection. I was watching the NBC, 90 minute special, regarding Roy Horn and his near death accident while he was performing in Siegfried and Roy. The anchor, Maria Shriver, was shocked, to say the least, by the segment concerning Roy’s skull and how part of it was put in his abdomen to keep his brain safe. My husband, Nelson, and I looked at each other and said “Been there Ñ Done that”. Yes, in fact, part of my skull was put in my abdomen for a few months too. The funny thing is I can see the traumatic issues of my life and yes I can still laugh.

Now, and yes I wish I could end my up-date by saying “see it isn’t that bad” but, lo and behold… I now have cervical disc disease and sometimes the pain is so bad I can’t eat, sleep, smile. And, at moments, I am a witch. But after going to a physical therapist, 3 days a week, for about a month, the serious pain goes bye bye till the next time. I still have headaches, different types of headaches, but headaches just the same. My balance is less than normal (that word normal is one of the most humorous words ever Ñ and where is my thesaurus!) But seriously, I have to be careful. When I move I should go slowly because I might just fall down but slowly means what? In addition, the doctors call my vision limitations as partially blind. Sometimes I jog into parked vehicles because I seem to forget my eyesight doesn’t see all and I still have to learn that when I jog or in some cases walk into poles I should look at where I am going.

And now the other part of my up-date… I moved. The summer of 2003, friends of our daughter, Melanie, (Mel will be going for MRIs etc. every year, every single year, when she turns 18) moved to Pennsylvania (PA) and she went there to visit them. When Melanie came home Nel and I were listening to words that we needed to hear. We no longer wanted to live close to a town where the people still refuse to talk with me. We no longer could live in a city where no one gives a darn. They no longer know how to say “Do you need help.” We will not support this way of life anymore so we started to think about moving. We decided we would go to PA for a week, every month, to see if this was where we wanted to be.

One of those weeks we stayed with Melanie’s friends’ family and then it was time to fly back to Massachusetts. The parents, Bonnie and Peter, drove us to the airport and they wanted to come in with us and here we were talking and laughing and then what happened? I walked straight into a pole. A small, tiny, little pole? Ahh nope. Rather a big, obvious pole. Initially, I figured oh gosh, this might be embarrassing but it was treated like it was no big deal. No fingers pointing at me, no laughing at my face. Bonnie just looked at me and switched sides so she could now protect me and my limited eyesight (and yes my heart is at happiness) and we were able to just continue with life. And then Nelson and I knew where we wanted to move to.

We have lived here in PA since June 2004 and we generally feel we are in Paradise. I think the first thing we were amiss about is the people here. It is 6:00 one morning and I needed to go to the store to find headache pills. This woman, who was working there, helped me before I even asked for help. Then I was ready to go to the cashier but I wanted to say “Thank You” to this woman. She looked at me, then she sort of smiled at me, and then she hugged me. She hugged me. Could there be more? What else is there? She hugged me.

And have I been out jogging? Do I still fall sometimes? Yup, and the huge difference is when I fall the first thing I hear is “Do you need help” and the first thing I see is people right there beside me giving me their hands. Unbelievable. Every time Nelson and I go into a business, or a company, or a store we look at each other and say, o.k. one of these days there might be a rather ugh type of person, and every time we leave we shake our happy heads and say “Kindness Again.”

Not only is the kindness wonderful but the neighborhood is beautiful too. The mountains, and the hills, the sky, and the trees, and all the animals We feed the deers daily. We have at least 5 deers every night in our yard and Nelson is calm when he spends time with his friends, the deers. We take the time to visit with the birds, and the squirrels, and the rabbits, and of course, the groundhogs (I’ll get to that in a minute.) We take rides around and we finally feel at peace with ourselves and our surroundings. And the people who live nearby are gentle and warmhearted.

Our next door neighbors, Bill and Joyce, are like an Aunt and Uncle, and we didn’t even know them 6 months ago. And Bonnie and Peter are now, not just our neighbors who live 5 houses away, and they are not just our friends, but they truly feel like members of our family. Spending time with Bonnie and Peter allows us to feel we no longer live in a house, but we now live in our home. Nothing could be better. Paradise ~ not always but most of the time. Sometimes, my heart does still break, and this type of crying is worst than sadness, but then, I figure, Yes, indeed, I will go on, and before I know it, I’m out jogging!!!!! And my up-date is almost at the end but of course…

We moved to live in Pennsylvania. We live in a tiny, little village. Our village is right beside a town called Punxsutawney. What could Punxsutawney be famous for? Um, let’s think. Oh ya there is one of those groundhogs that lives in Punxsutawney. His name is Punx’s Phil and Phil is famous every year, every February 2nd, really, every 02-02. Phil must wonder is it winter or spring, and Nel, and Mel, and Me had to wonder is it life or death, but now every year, every February 2nd, Punx’s Phil and Me celebrate LIFE.

And again I want to say “Thanks – Thank You – Thank You So Much” With all of you I feel a unique, touching my heart, connection – We might die but if we are still here tomorrow we must feel those 3 words, you know my favorite words

Our Love and Our Laughter must be found in Our Everyday LIVES.

Your Friend, Shirley

©2005 Permission Granted to the Brain Aneurysm Foundation For Use On Website and Other Print Materials