Established April 15, 1995
University of West Georgia Disclaimer
John Parsley
30 December 2002
In late January of 2002 I was home alone, the father of two, in very good health with no physical problems in the world except for some hay fever allergies. I was warming up a frozen dinner when a terrible headache began which made me swallow an aspirin to escape the pain. Instead, within a very short time I collapsed down onto the floor unable to move or talk.
I am told that I was bleeding from the back of the head. I was not aware of that at all, but I knew that I could be dying and that there was nothing I could do. I could hear the stove beeping that my dinner was ready but there was no way that I could turn it off, or do anything. Soon my daughter came in the house and found me. She screamed for me to wake up and called an ambulance for me right away. As my wife pulled up soon thereafter she found more than one ambulance at our house and I was being taken away to a hospital.
They found that I had a bleeding arteriovenous malformation which can kill or make blind by means of it's bleeding. I had no idea that I had one or that it is called a "hidden time bomb". They wanted to operate but they had to wait for the swelling in my brain to go down. My relatives were not encouraged too greatly hope that I would survive. As for me, I have no memory at all of anything from now on until about a month and a half when I would be at my second hospital.
When they did operate it required many hours and although it went well those who watched me did not seem to think that I would make it even then. I had to be helped to move around at all and I was having severe eye problems as the operation was not far from the sight center in my brain. I had to be watched because if I fell on my head it could be the end of me.
My wife came in to talk to me around this time and we have discussed this often since. Many had prayed for me to recover and my wife told me that she had a message for me. God was going to heal me and not just heal me... I would be as good as I used to be. It would take time but I would see it. I had to do my part, which was not to give up no matter what happened.
I believe in God and it was not hard to just try so I did. Then I continued at the hospital for weeks and seemingly there was little if any progress. Day after day continued and the issue remained in doubt.
Then I was sent to my second hospital in another state and the same routine continued. I still remained very much the same and it was not known what would happen to me. I was allowed here to use a wheel chair and that gave me some mobility.
They started me on some rehab and that was a good sign I guess and then I was told that I was going home! I didn't say so but I wondered how I could go home as I was so very weak. But on the appointed day my wife came for me and I was ushered to the car. It was as I remembered and our two loyal dogs greeted me lovingly, but I only got in the house helped by two relatives.
I loved it at home and I lived in fear of being sent back but I didn't have to. I started rehab nearly every work day at the center and I didn't miss a class. My favorite teacher later told me that she wondered how they could ever help someone so far gone, but they did. I purchased a cane which was a great help in getting around. I worked here at classes for weeks and I later learned to walk without a cane and do many things. They told me that I would gain back things slowly but surely until at least a year after my episode. And I think that is correct.
I still had physical problems at this time including some short term amnesia, and stomach upsets and moderate eye problems, but each stayed only a very few weeks and then left me as suddenly and as mysteriously as they had come.
About five months after my operation I started back to work part time and slowly increased it from that point. Work was hard as some things I did as well as before but other things I had to relearn from scratch. Everyone was so kind and understanding!
It has now been eleven months and I am not back completely to my old self, but I can do most of what I want to. I am at work full time and I have been approved by my doctors for driving and when I am through the red tape I will slowly get back into this. I appreciate being here more than I did and I especially appreciate the Lord and my doctors and my close relatives. They have all been so wonderful!
Sometimes I can't believe that I have survived this. I didn't do it and I don't deserve the credit. I do wonder why others had the same thing and didn't survive. I am so sorry for them, especially the young people. I thank you for reading this and I truthfully hope that you never have to go through this.
Update: 28 Feb 2003
It has now been 13 months since my AVM ruptured and I was operated on. I feel good at this time. I recently saw my doctor and I told her that my memory is a thought or two behind what it used to be and my steps are a step or two behind what they were, but this is about the only negatives that I can see.
I was told to expect progress up until my first anniversary and perhaps beyond it. I have noticed the slow steady improvements and I can still see them continuing. Let's not stop now!
I went back to work early for me,(5 months),and perhaps it was too early but I believe it helped to challenge me to improve and regain my skills. My boss and co-workers have been so kind!
I continue my attempts to regain my driver's license. It has been a slow process even with my doctor's approval, but I am seeing progress and I believe that I am ready so we shall see in a few more weeks. When I get it I want to start back slowly and just help my wife in driving to and from work until I am sure I am ready for more.
A few months ago I decided that I was ready to start back into jogging again if I could. I started in the backyard and I "ran" for about 4-5 feet, which was most pitiful but was good for me in the condition that I was in. Since then I have slowly increased the length involved until I now can jog the length of our fairly large backyard for a couple times. I won't set any world records, that is certain, but I feel that I can do this so I do. I am trying to get stronger in every way that I can. When I first left the hospital I was most weak and I wondered if I could last long. I am stronger now and I feel that I will be around for a good while yet. At any rate I am trying to!
Some have asked me the value of rehab centers. Mine was most helpful, especially in regards to regaining my walking abilities. That is where I relearned how to walk without my cane.
Last Summer I was visited by a friend whose Son had suffered a brain injury in a traffic accident about the time of my AVM and we compared notes for a good while. We had many similarities and many differences, and I want to say how helpful it was to talk about my problems. And my friend later remarked that the conversation was a key to helping him understand his Son and his problems. It has helped smooth out their relationship and I am so glad.
If you suffer or have suffered from AVM problems I wish you the best kind of luck. I thank medical science and my good wife, and the good Lord for all of my progress.
Update: 21 Apr 2003
It has now been close to 15 months since my AVM operation and I still see slow but steady improvement. Every week or so I still see myself doing something else that I have not tackled since my disaster.
This Spring very soon I will be cutting our grass at the house again and I am actually looking forward to that. I have passed two tests for regaining my driver's license which were designed for those coming back from brain surgery. So I expect to get this back in time. And I have easily walked into town from my home and back alone which is a total of about two miles.
Now I want to mention something which was very common at the hospital I went to but I don't read much about in these articles and that is the aversion of patients such as myself to sugar and sometimes other substances. Since my AVM the taste of sugar is bitter to me. I am talking about man-made sugar and items filled with it. Sugary soda-pop, cake icing, candy, sugary cereal, doughnuts with sugar, etc. Now I can eat fruit with natural sugar and yogurt which has some type of sugar, just not the obvious foods. At the hospital most all of my fellow patients had the same reaction and I have wondered about this. I still have this reaction, but I think it is slowly fading. I asked my doctor about this aversion and if I should ignore it or what. I used as an example sugary soda-pop. He told me that I should listen to my feelings and quit using the sugary stuff as it was not good for anyone. That is as much as anyone has told me but I do wonder about it.
My doctor has also kept me away from prescription or even over the counter medications as much as possible. I was told they were not good for recovering AVM patients. I don't know why, but I have done as I was told and it seems to help. I even use a much less powerful allergy medication and I can live with that.
I am happy that I sought help from all sources when I had my AVM ... the Lord and the doctors and my close relatives were all of tremendous help in bringing me back, in my opinion. Thanks to them all.
If you have had an AVM I do wish you the greatest success in coming back, and I do so with all my heart. For those who didn't survive, or who have great disabilities... I believe there will yet be another life and I don't think that there will be any AVM problems there.
Update: 21 May 2003
I suffered my AVM and operation in January, 2002 and I let my driver's license expire in May as it was obvious I was not ready for driving. As I came back I thought I would likely be allowed to drive again by the Fall and certainly be the end of the year. Oh, was I wrong!
The state is in no hurry for those who have suffered brain surgery to get back into driving no matter how they test. I got my doctor's OK for driving in October but when I contacted the state agency for such matters the weeks turned into months before anything was done. I guess they are right to take extra time to be careful but it was most frustrating. In April of this year I was allowed to have a driver's evaluation at my old hospital. These were in depth tests and required two days, and I passed both. But this didn't mean I could drive, it meant I could take the state driver's evaluation a month later. I was given a full test just like a new driver. Now I am more than twice the age of most new drivers so I joked to friends that if I passed I would ask my Mom if I could take my wife to the prom!
Well I studied hard for the state tests and I passed them all. I should have had as I drove for years and years before my AVM and I was ready. But it was nerve racking!!!
Now I am driving again but I must start slowly as I have not driven in almost a year and a half and I am most rusty! It is a strange feeling to be at the wheel once more. It is like I am living a second life with old memories of a previous one.
I have now achieved most all of my goals for coming back from my disaster. I am not back to my previous 'wonderful' self but I am getting close. My memory problems are also greatly improved but not everything is back to normal. I get very tired especially late at night and I go to bed quite early. I am not as trustful of situations as I once was. Something terrible happened and so it follows that other equally terrible things could happen. I am not as sure-footed as I once was and I have to concentrate to keep my balance, especially if I am tired. But there are good results too. I try to be more thoughtful of others especially those who are not well. I am closer to my wife and good friends and I am more religious.
Oh, I mentioned in my last update those who are turned off to sugar after an AVM operation. Some few reported no such problem while some few did report one. It is not experienced by all but it is seen. It is strange to me.
A friend told me of his Mom who had an brain AVM long ago. She had an operation and lived for 30 years to tell about it. She is an inspiration. I may not do as well as she did but I will try!
My best wishes to all of you, especially those who have had an AVM!
Update: 21 Jul 2003
I should have mentioned in my last update that before my AVM I felt 6-7 years younger than my 53 years. Now, I feel 6-7 years older than my age. But it is just good to be here and I hope to improve my relative age as time goes on.
One day a couple weeks ago I really overdid it and I want to mention here what happened. My wife and I walked a good three miles circling our town and it felt good, but when I got home I didn't rest long but started cleaning windows on our hot enclosed porch. I wanted to hurry up, and I had to stop with it halfdone as I was very nauseous and exhausted. I felt SO bad, but although my stomach felt the worst, my head was fine and for an AVM patient I think this was pretty good. I promise to be more careful in the future!
My doctors were outstanding in treating me and helping me. Outstanding! I thank each one! But I am happy that my friends and relatives prayed for me to the Lord. If you need help, try it. It does no harm and can do worlds of good! Believing is what it costs(to begin with) and I thank the wonderful Lord for my recovery. Don't give up, you can do it. Also having a spouse to be there for you and be behind you is invaluable! You may feel more than half dead, but if you're not then there is hope. TRY!! Write me if you'd like and I will try to encourage you and pray for you.
I am a collector of original American Civil War items. (In some categories.) About eight months after surgery I purchased the most expensive such item at auction I had ever purchased. I was nervous about it, yes! Was it genuine? I was good, but not an expert. When it arrived I liked it but still I was not 100% sure. Would the AVM ruin my judgement? A couple months later I was displaying at a Civil War show where there were experts that I knew. I showed it to them, and I got a very good reception. My item was good, but was it worth the high price? One dealer joked with me about the high price I paid for it. I wondered. This past April I brought it to another show and displayed it. I was offered a large sum, twice what I paid for it to my shock, by a top Civil War dealer. I didn't sell. I had made the right decision in purchasing it. Inside I still had my most important skills.
Again, if you have what I had, keep trying and looking for a way. I hope that in time you will sweep it away. God bless you!!!
Update: 12 Aug 2003
Wow, my AVM and operation for same happened now a year and a half ago. I am about at a point where my slow, steady recovery progress is expected to peak and end. I have been feeling it slow down some but I believe I am still seeing some continued progress.
I reported that I got my driver's license back in May and I started back into driving slowly as I didn't want to bite off too much too soon. A couple weeks into my license I was driving my wife somewhere about an hour away but I was a little afraid to drive alone or on a crowded highway. I didn't feel ready. I was driving my old mini-van and all of a sudden it all came back to me... the memories of just how to drive this vehicle in all the conditions that I had long before experienced. With it came my confidence, and after this I was ready to drive anywhere, anytime. I now once again drive to work and back alone every day, and I am getting back on the big highways when necessary. I had my old vehicle fixed up and it is running good and we will see how long it can continue running and how long I can!
I just learned that I did have a blood relative who previously had something somewhat like the medical condition that I had. I was surprised to hear that an uncle of mine had an "aneurysm" in the brain a generation ago. He collapsed and was found bleeding from the ears and mouth. I am told that he partially recovered, but was badly hurt when his wife wanted him to leave but his money to stay. What exactly happened is difficult now to learn, but it sounds like she was not prepared for the "sickness and health" of marriage. I am told that he ended his life. What can I say?
Many of us who have had an AVM or aneurysm have trouble getting insurance. It has been the same for us. My wife wanted us to increase our insurance as she had almost seen how it would be to lose the breadwinner and she feared that. So we tried and we were sent an insurance doctor to check us both out. We gave blood and whatever and answered tons of questions and gave them permission to view our medical records. They surprised us both by quickly accepting me but asking for more information on my wife. I laughed but she was not amused and wondered if I was not the one who had suffered the AVM? Eventually they accepted her as well and we doubled the insurance, but we pay more now!!
I mentioned that I have total amnesia as to the couple of months after my operation. Last November we revisited my first hospital and I really expected that it would jar loose some memories of the time and place. Not at all, I recall not the slightest thing. It was strange to be there and be shown where I had been and to have no recollection.
I want to relate also one experience I had while being taken to rehab about a year ago. Of course I had to have a driver and so my daughter was kind enough to take me there. I got into the habit of checking the mailbox when we would pull into the driveway when arriving back home. Well, the next weekend my wife was driving us somewhere and when we returned I headed out to the edge of the yard to check that mailbox. She yelled to me..."John, the house is OVER HERE." Well, I really laughed at this as I don't think I was ever so far gone as I didn't know where the house was when in the driveway!
I have read many of the stories on this site. I can't comment on my own article but the ones I read were really VERY good! Much better than some websites used by "well" people. I don't think we have many mentally challenged writers here!
Update: 21 Jan 2004
It is now the second anniversary of my AVM and operation for same. Someone asked me a few weeks ago if it wasn't a dreadful shame that I had this disaster? I told him that I didn't feel that way at all. I try to be thankful for the life I now have, which two years ago appeared to be very close to ending. I am still living and working and enjoying life the best I can. I am thankful to still be here. We should all be thankful that we are still alive and kicking! Maybe we can't all be 100% like we once were, but we can still live and do our best!
Some wonder why I thank the Lord for being here. I think He is why I am still here, and maybe why you are still here, too. It doesn't mean that those that passed away are not loved by Him. I needed to change and I think the AVM helped me to change. I thank God for it. Those that passed away were perhaps ready for the next life, as I wasn't.
Anyway, I wish all of you AVM and aneurysm survivors the very best in the present and in the future!! God bless you all!
Update: 19 May 2004
I have had problems this year with high bood pressure, and I was on meds for this for some weeks. These could make a person drowsy and in a slow mode for sure. They specifically affected me in my walking abilities, and I had more trouble avoiding obstacles and in walking with any speed. By changing my diet, and avoiding stress I was able to slightly improve my blood pressure and so I am again off these meds. And I am improving now my walking and speed, little by little. I also have high cholesterol, but so far those meds do not seem to be a problem.
I still get very drowsy late in the day, and I can cut the grass but I am not able to do much other outdoor work.
When I talk I am told that I will sometimes leave out a word, here or there, so I try to monitor myself and this does seem to help in many cases. And for short term memory deficits I found that giving myself assignments to memorize lists was most helpful. I consider myself fortunate to still be around at all. My wife was telling me that during the darkest days of my AVM that my skin had turned grey, the color of death, and that plans were being made for my wake. So it is good to be here still! I know others in the family feel the same!!
But generally I do feel better than I could ever have dared hope to. I am able to work, and drive and shop near normally and this is beyond my wildest hopes. I thank the awesome wonderful Lord.
When I had my AVM, my wife got all to pray for me that she could find. Our denomination was not really into healing so she found others that were, where we still go. She and my daughters laid hands on me and asked for my healing. Since this time we have found ways of serving Him that we would not have thought possible. But as I have said before...I was not healed because I was so good and perfect. No way. I believe that I was going the wrong way and the AVM helped me to change. Thanks be to Jesus, a thousand times!
I pray that all of you with a history of AVM or aneurysm problems will find relief and healing!
Update: 22 July 2004
I had what I believe was a precursor to my AVM event some time before my attack and I want to post it here in case it can help someone.
I was at home, perhaps two years before my AVM bleed, and all of a sudden one day I had a terrible headache, so bad that I could hardly stand it. This was followed by my being very sick to my stomach several times. I thought it was some type of flu, but it continued way past twenty-four hours. When I went to see my doctor he told me that I likely just needed some more rest. I was not tested for any other possible problems. I continued to be very weak for a few more days, and would have stomach upsets which continued off and on. Finally I seemed to get over it after I went back to my doctor again and he gave me nourishment through an IV tube.
My life was back to normal except that I would still suffer strange headaches every two weeks or so. The only way to stop these headaches seemed to be to fall asleep. I had no idea why, but they seemed to get gradually worse as time went by, until I suffered the severe headaches again which brought on my AVM, almost killing me. These last 'severe headaches' were very similar to what I had first suffered with my 'flu'. Of course, I think that all this was part of the same problem. Since the operation to remove my AVM I have not seen any more headaches.
Now, I wrote in my last update that I believe my AVM was healed by God. Several wrote to me who understood and I pray that the Lord will continue to uphold all of them. Again, I have nothing to brag about because I believe I was going the wrong way in life, after having been on God's side in the past, and it became necessary to heal me so I wouldn't die without God. Nothing is strong enough to take one from God's hand. Is He dead, or sleeping? Not hardly. If we have some small faith then He can do for us what He wants to, including heal us. Since I came back I have seen Him do many wonderful things. A couple weeks ago my daughter was struggling with religious questions. I told her that after what I had been through and what I had seen that I do believe in God. How much? 100%.
I pray that all of you reading this will find God and His wonderful healing and mercy.
Thanks to Jesus.
Update: 5 January 2005
This month is the third anniversary of my arteriovenous malformation and operation to remove same.
I am moving forward to restore my life to "normal" or as close to it as I can get considering what happened to me. I have learned to become a closet A.V.M. survivor, and to only discuss my past troubles with members of the family or very close relatives. Only these people have the slightest idea of what really happened to me. In order to lose my past and attempt to move on to something different I find little choice but to choose to forget. I can rehash the past and stay in it or I can leave it there in the past and rush by it to a new future.
There is an old story about a man who was facing death. He found the ultimate denial of his fate. He escaped and ran away from his death in a most unlikely way, and when he was safe he stopped to admire the beauty of nature. When he got back to his home, he blinked and found himself trapped back in the act of dying. Reality had finally caught up with his escape fantasy. Sometimes I feel like my present life is also based on some very unlikely happenings. Is it all real, and am I once again back in my life...or am I dreaming this all up while I am really in some hospital in a coma???? What is real and what isn't?
Of course I know that my life is real, but I do admit that most unlikley things do happen in this new life, this new world. For His own reasons God has shown me a new life. I don't deserve it, but I am thankful to Him for it.
I wish ALL of you the best in fighting some of the same things that I have fought. I hope your reality will outshine mine.
Update: 7 April 2005
I have recently won some more small gains, and at over three years since my operation I want to mention this to you all to hopefully encourage you. I have long written here how I had to go to bed so much earlier than in my previous life and how tired I was in the late afternoon. Well, I am not back to normal but I have improved with time, and now I can stay up to see a 9PM movie to it's conclusion, if it is not a week night, and I finally got to this point just recently. It means that I do not have to sleep my life away quite as much.
Also in the last month I have noticed my strength return to near normal. We get water delivered to our home water cooler, and the jugs are very heavy. Just home from the hospital, I could not lift one from the floor to the cooler, but in 2-3 weeks I could, and within 2-3 months I could bring one into the house from the front yard. As of February I could bring in two from the yard, for the first time since the operation.
There are not many more things I need to improve. I do still up and say the wrong word sometimes, and I do try to monitor myself but I can't always. I know the word I want to say, but what I want to say does not always come out! Especially if I have something else on my mind.
In December I was called in to the motor vehicle administration to check on my driving. I was scared to death as I didn't know what they would test me for. I have been driving for a year and a half and I still have a perfect driving record, but I didn't want to lose it. The tests were all things that I had seen before and so I felt I had done well when it was over, but I asked the officer if he could tell me how I had done. He told me that unofficially he could say that for a person with past brain surgery that I was about as good as it gets...test wise at least! I felt better, again.
Some of you read my last updates and wrote me. God bless you all. Some of you have big problems, but I pray that you will all do well and improve with time. God bless you all.
Update: 30 June 2005
My mother fought with cancer for the last few months and passed away last week. It hurt me, but I am glad that it can no longer torture her with pain.
Because I survived my AVM I was able to take her to many doctor's appointments and I brought her to the hospital from which she did not return. I think it was her time to go, and it gives me comfort to have been there for her and to have attended her funeral. I am glad I lived to do so.
I know that an aneurysm or AVM can interfere with a person's reading habits if nothing else! It was so to me and I was not able to finish an entire serious book for some time after my surgery. Last year I started reading books from a series by the late western novelist Gregory Jackson. And just a couple weeks ago I read my first American Civil War book complete since my disaster and a couple more since then. This used to be my passion and it is wonderful to be able to do again. To have our hobbies and interests intact is a great advantage.
Recently I went to the barber shop for a haircut and I knew that the barber must be able to see some signs of my past operation in the back of the head, but I never had any comments until this time. The lady barber asked me what had happened to me and I told her that I had earlier had a brain aneurysm. She told me that my neck looked worse than my head and I replied that I was lucky to have a neck! We laughed. Not being very diplomatic myself, I could understand, and I was not angry with her.
May the Highest Power help all of you on this site to regain your health!
Update: 31 October 2005
Things are going all right for me at this time.
In July my daughter's condo (the highest one in her building) was struck by lightning and pretty much destroyed. We went over to help out that night and it looked like a bomb had gone off in that building. She was there and was lucky to have escaped unhurt. The owner is putting them up at another rental building and even their clothes were pretty much all ruined. Once again I was happy that I was alive so that I could help out my relatives.
When I was released from the hospital after I had my AVM, I was extremely weak and I wasn't able to help any of my people no matter how much they may have needed it. Twice I remember my wife waking me up in the early morning to ask me if I was still alive. She said that I was so still that it made her worry about me. I didn't feel like I would live very long, but I e-mailed one the surgeons on this site and explained to him where I was and asked him when the other shoe would drop. By this I meant when would the AVM finnish me off. He was kind and told me that from what I had told him that he expected me to do well and that I was not looking at a near death. He was right and the Lord has been most gracious to me. I guess I have fooled others by still being around, but I have also fooled myself!
I have applied to retire from my job after the first of the new year. The AVM did not stop me from working more than three more years, but I am now ready to go, and I am looking forward to it. I want to keep busy like my late father did when he retired at about my present age. (He went on to live another 30 years)
All of you also must not give up, but keep on trying to deal with your health problems. Good health can come to you and you may find the better part of your life is still in front of you, and that perhaps there were some good effects from that AVM or aneurysm that you received. I pray that this may be so.
Update: 28 November 2005
On a recent weekend I set up at a large American Civil War show where memorabilia and books of the historical conflict are bought and sold and traded. This was the first such show that I attended entirely by myself since my AVM and bleed and I wanted to report to you all how it went.
I set off for the show on Friday and the whole trip was about 130 miles each way, and I was able to make pretty good time being as I was alone. My wife stayed home because our youngest needed some help, and I told her that I would be fine. Everything went well at first and I got in a huge line of several hundred sellers and waited to be let in. I set up and did some selling and then looked at some of the other displays and then was off to my hotel.
All was well until I heard from my daughter who was having a minor catastrophe, and there were several calls back and forth. Then I saw it was dinner time, and I ordered room service after which I saw that the night was getting cold and the heat was not working in my hotel room at all. I reported this to the front desk and negotiated over this problem until my dinner arrived and I tried to pack for a new room while I also ate dinner. After I moved I finished eating and around mid-night I turned in which is very late for me.
The next day was outstanding for selling and I even was able to make one major purchase and buying and selling do not always go hand in hand at these shows. The rest of the day was relatively normal and the last day, Sunday, slow as usual and then I packed and escaped town before traffic got too bad.
For an AVM survivor I think I did OK, and I don't think that all well people could have done as well. We may be hurting, but sometimes we can rise above our disasters and surprise even ourselves!
The Dragonfly and the Spider
This is a true tale from the first Summer back from my
AVM bleed. I was coming up to the front door of the house, and I
couldn't help but see something wriggling frantically caught in the
web of a spider. It was a dragon-fly and somehow I knew how it
felt, waiting for that spider to come out and finish it off. I had
waited in that hospital room and had also felt the hopelessness of
waiting for something to finish me off, in my case the AVM. I have
an aversion to spiders and their webs, but I was determined to save
the flying insect. I placed my hands in to rescue it, but I came
out empty, so I tried once more. I cupped my hands and scooped it
out and threw the dragon-fly up to the breeze where it flew away
home. Now it knew how I felt to escape the AVM. May all of you also
learn how it feels to escape the end and find new life! I pray that
all of you will!
Update: 10 March 2006
Spring is about ready to arrive in my part of the world. I hope that all members of this site are hanging in there.
I just retired from my job in January after 35 years. I was on leave for some months and used up all of my sick leave, but it didn't stop me from finishing up my career. I recently found the watch that my late father received when he retired and on it was engraved..."1937-1972 Happy Days". He had worked the same number of years as I did. It feels good to be able to get enough sleep now, and to slow down some.
To my best friend:
Fred was my best friend since we met in seventh grade in school. We had many similar interests and hobbies, and we hung out together for ages. He was the best man when my wife and I were married. One night, a few years ago, Fred went to bed and I am told seemed to be in good health, but his relatives found him the next morning and he was gone. His sister called me with the bad news and I was at the funeral when the pastor told us that the autopsy showed that he died of a brain aneurysm. Strange that we both, unrelated, were each attacked by such similar things. Fred did not live to write here and join the family, but many of us can relate to how he died.
To those of us who survive and carry on the battle for our health, there remains the possiblity of a good outcome. This is the true story of a man who many years ago suffered brain surgery perhaps like many of us did. He survived and won back much of his health and went back to his job. He had an important job where he wheeled and dealed in setting up important contracts. The surgery left his skills basically the same, but his facial expressions and speech were not always appropriate, we could say. When he negotiated the important agreements that were part of his job, people always seemed to underestimate him. They thought his mind was absent perhaps, because of his expressions, but at least in regards to his job...he was as sharp as ever. And so his success in negotiating the contracts was much greater than it had been before his operation.
He gained a great deal of leadership in his profession, and even ran for public office! Sometimes our disasters can turn out to be our greatest blessings. May all of us be blessed as he was.
May all of us push forward towards good health and total success. May God bless us all.
Update: 23 May 2006
I retired in January and now I get more rest and sleep and these are helpful. Also a few weeks ago I joined a gymnasium where I go to work out and I feel that this is very helpful. I recommend this to all, if your doctor will allow it. Here I use some of the same machines and exercises that I used some years ago in rehab and I strongly feel that they are still helpful. And they are much cheaper than going to rehab! My walking is improving and the times when I appear to be a walking "drunk" are becoming fewer. I always think it very funny when people think I may be intoxicated. Since my bleed in '02 I have not had one sip of alcohol. My friend told me that drinking brought on a seizure for his son (after auto accident head injury) and that keeps me from it, for sure!
I read an account of an airplane crash disaster some years ago, where there were only a small handful of surviviors and only one person who survived unhurt. He was found calmly waiting for rescuers, and appeared to be fine when they arrived, but his mind was far from unhurt. What he had lived through and seen and why he was the only one who was unhurt were things that greatly upset him. These were issues that he had to deal with before he could resume his normal life. Similar issues sometimes are the hardest things that I have to face up to in order to put my disaster behind me.
I was asked recently if I had experienced a near death experience during my AVM bleed disaster. My family was told that I would die, or if I lived I would be brain dead. I filled out a big questionaire about this question, and it got me thinking. I think that I had some sort of near death experience mainly because I have changed so very much since my bleed. But exactly what happened is something that I do not remember nor do I want to. I know enough to greatly fear the pain and mostly the feelings of utter hopelessness that I had during those times. I am too afraid of those feelings to want to go back there in any manner. I think this is why I remember nothing and have no desire to ever remember.
I think that I survived those times so I could change and so I could do what God wants me to. It works for me.
We must all try our best to recover our good health and our lives. I pray that we all will.
Update: 12 July 2006
Things are going OK with me, and I hope that all of you are improving. As long as we are moving in the right direction, towards full health, then we can't ask for more.
I used to write poetry before my disaster, and I have started to again just recently. This is one I did which was recently posted on a poetry website. I wanted to post it here as it is about my AVM experiences.
I was home from work, warming my meal And the
pain in my head felt so very unreal
It was hard to stand, yes, that is true But I had no guess as to
what would ensue
I fell to the floor like a little rag doll But there was no time to
scream or to bawl
To the hospital I was sent, ready or not But there was no time for
a dream or a thought
An AVM had burst in my head And I was approaching the land of the
dead
The operation I was given just went on and on And my memories, and
skills were done and all gone
My wife and our girls did ask and did pray That Jesus would come
and heal me someway
It didn't come quickly, but with many tears came steady slow
progress down through the years
I got to come home to my girls and my wife I once again walk and I
got back my life
People say that I have changed, and you know that it is true It is
wonderful to be here and to be so brand new.
Of course, I am not all brand new yet! You should have seen me last night, going to bed late. I was tired and so I was stumbling around again like a drunk person. At least a drunk person gets to enjoy his drinks before he becomes intoxicated! I get this way without a drink, so there is no enjoyment at all. (Just joking) I am still improving...in a VERY slow manner, but improving! We all must try and pray for the others here who don't have their health back yet!!!!
Update: 28 August 2006
I have been reading many of the updates and new writes, and I am hoping and praying for all of us.
I am still improving at a very slow rate, and I am happy as long as I am not going in the other direction! If I can improve some after four and a half years, then I hope that all of you who have gone through this for a shorter length of time will also be able to go forward.
Last week I played tennis again, for the first time since my bleed. VERY rusty was I, and so was my wife, but it was still fun to do something that I never expected to do again. I had no problems from my bleed that I noticed except for when I went after a backhand shot and nearly fell smack on my face on the blacktop.
I want to also buy a bicycle because I think it will be good for me. Even when I was young I was never a long distance cyclist, but I can make use of it.
A couple weeks ago my oldest was in the hospital for a small operation, and after it was over the doctor came out to talk to me. He noticed something about me, and asked me about it, and at first I thought it was something connected to my past bleed, but it wasn't. My eyelids droop a little compared to most people, at times, and it is something that I have heard mentioned by medical doctors once every great once in a while all during my life. One told me that it was something that might indicate a past small stroke. It is something I have evidently had all my life, that only doctors bring up, so I guess it is just me. This sounds like a small thing, but I was happy that he saw what he did and not evidence of my past AVM and bleed.
Do people test you, those of you who have come back from big brain operations? When I returned after my operation to my family and then to work...practically everyone had a question for me to see what I could remember. Do you remember me? Do you remember what year it was when Aunt Aggie died? Do you recall the president before Carter? Who was our boss before the present one? Almost all these question miss the real problem area, which is the short term memory. I may can tell them who was the US president in 1966, but I could not tell you what I had for breakfast an hour before! Thank goodness I don't get those questions anymore!! It seems to make people accept you more after correctly answering some of these questions.
It takes time to get over what we are getting over, but we have to keep trying, and we will.
May God bless all of us.
Update: 24 October 2006
Last month was vacation time for my wife and I and we decided to drive instead of fly, so it was, for us, quite a long car trip. We live very much in the East and we drove out to the Mississippi river where we visited sights relating to American history and musical history. (Including Graceland) I did almost all the driving and this was by far the farthest I had driven since my AVM bleed. During the daytime I can now drive as well and as far as I ever could, but at night my eyes do not serve me as well as they did once, and I do not like to drive great distances in unfamiliar areas, after dark.
After my AVM, I knew my eyesight had been effected, but I wasn't sure exactly how. As soon as I was able to go on in for an appointment with my eye doctor, I was tested and they gave me more powerful reading glasses, but to my surprise my eyesight tested OK for far sightedness.
The one strange thing that I noticed was a tiny pin sized blind spot in the peripheral vision of one eye. It was very small, but it was there. I never mentioned this to a doctor as I was totally interested in several much more serious potential problems. After a very few months, the blind spot just disappeared, and I never had it again. When in 2003, I got my driver's license back, I was tested several times to see if I would need some type of glasses to drive, but no problems were found.
Since my AVM I have "talked" with many of you survivors, or your relatives via emails and I prayed for many of you and many of you prayed for me. I admire you all for fighting for your health and for those that you love. The one I remember most clearly is from two or three years ago, and it came from the spouse of a man who collapsed, like I did, alone at home from an AVM and died without ever waking up. She asked me about the experience, and I told her what I could remember. I told her that for me at least there was little pain involved, and that I knew that I could be dying. A person does not die this way on purpose to leave their family. There is no choice in the matter. There may be no time for goodbyes, but I knew that her loved one would want her to know that he loved her. It was all I could say.
Do some think that those of us who survived an aneurysm or an AVM should just get over it? Before they say this perhaps they should try it to see how it really feels!!!! And it would help if everyone would let us forget it!
I hope that all of us will improve and continue doing so!
Addendum
I just sent in my update a couple days ago, but I thought that I had better also send in this explanation. I don't mean to complain when I talk about the minor problems that I still retain. The major problems are gone, and I am SO grateful.
It is wonderful to be able to drive again. When I was in rehab, I asked them how long it would be before I would be able to drive again and they did not answer me. They didn't because it was not likely at all that I would ever drive again after a cerebral bleed of this type. But they don't know everything, and I have come back to drive and get back my life. If I did it, then it is possible that you can get it all back as well. Maybe you just got home from the hospital, after having a bleed caused by an aneurysm or an AVM. It was the worst, and even now you are not in good shape...but try. You don't know how far you can recover and neither do the doctors.
Let the doctors help you, and let your relatives help you, and let your friends help you, and let God help you. You may surprise all the doctors, as I did, and yourself!
Update: 25 January 2007
I have just celebrated the fifth anniversary of my AVM and bleed, and it is good to still be here to write this. I congratulate those of you who have survived this sort of thing for often a much longer period of time than I have. It is something that CAN be survived. If we try and don't give up, and if we seek wise medical help, and if we are helped by our relatives and our friends and God then good health can be ours. At least this has been my experience.
I remember being in the hospital looking out the window, and wishing that I would be able to live and to return to my home one day. I didn't really think it was possible, after all can a shattered mirror be mended? Can a shattered mind be mended? I thought about this, and decided that if I were like I was, in a hospital or rest home for the rest of my life then there was little reason for me to want to continue living, but if I could go home, and have my life back again then I would be very grateful for those five years!! To my shock I got those five years and I think I will be given even more time. If it can happen for me, a man over fifty years old then it can happen for you too, or for your spouse or for your friend. I pray that it will be so.
My wife told me that after my operation she found this very site, and read many of the stories at that time, looking for some good news that she could hang on to. She told me that she found very little, but she didn't let it bother her. She kept on trying and kept on praying. We can not give up. If we keep trying then we may get what we want. You will never know until you try.
I am one of those who wrote here in the past that my family was told that I would die or be as a vegetable. I have no memory of this, but my wife told me this a couple of years after the fact. I do not think that the literal words survive to this day, but this was the general meaning as understood by my good wife. Now my name is Parsley, and although my late father used to tell people that our name is "spelled like the vegetable"... I know that it is not really classified as a vegetable. Not exactly, but this is as close to being one as I ever care to be.
Update: 2 June 2007
As I said in my last update...it has now been five years since my cerebral bleed, and now it has been five years since I returned home and went into rehab. I distinctly remember laying in my hospital bed, and being totally dazed, but wishing that I could somehow return to my family and my life and have another five years to live. I didn't think it was possible, but I could hope. That I got what I wanted, has so totally amazed me that saying it "blows my mind" does not say it all.
These are some things I remember about that first year:
The painless collapse when my AVM
bled.
The nurses calling me Houdini, because I would figure out ways of
getting out of locked rooms and zipped up beds.
Coming home as weak as a kitten, and being helped through the door
by my family.
My dog guarding me as I slept and slowly recovered.
I quit using my cane when I felt ready, not when the rehab doctors
told me.
Going grocery shopping with my wife and pushing the cart like a
walker so that it would help support me.
Going bowling with my family, and rolling the ball, even though I
had lost so much weight that I nearly fell over each time. And
coming in second out of four players.
With small steps we make progress. For those of you at an earlier stage...I wish you the best. I would tell you to use every source of help available.
Your doctors. If you don't have one, then
get one.
Your faith. If you don't have one then get one.
Your relatives.
Your friends.
Don't give up!!
I want to say one more thing, about what has been said about no time limitations on our coming back from our disasters. I agree 100% with this. When I left rehab, they told us that we would have one year of time during which we would regain much of our skills, and that some authorities said it could be even longer sometimes. I didn't feel my short-term memory improve a great deal until two years after surgery. It is now about normal for my age. I got my photo made when I got my drivers license back about one year after my rehab ended. The photo on it shows me as scary enough to frighten small children. (I was trying to smile!) Photos of me now are much better, but are not always perfect.
I still have some vision problems with close-up objects. (Like checking the spelling for this update, and my hearing is still a little off, but I have no complaints!!!
Again I pray that all of you on this site will keep on trying, and do far better than I!!!
Update: 7 July 2007
I don't know about the rest of you, but since my AVM I have always had trouble with tackling projects which were totally new to me. Yes I am over 50 and they do say that you can't teach an old dog new tricks...but I think that I am far worse than the old hound mentioned in the story.
I had enough trouble just trying to do the things I used to do without trying to explore a brand new country and I think that is the main reason for my difficulties. Very recently while on vacation I did attempt something new that I had always wanted to do, so I thought I would mention it.
I live in the East and for vacation we visited Colorado and Utah, and what beautiful states they are! I had always wanted to go horseback riding, but as close as I ever got was when I was a small kid and I was lifted onto a horse at a carnival and escorted around a small circle path for about five minutes. I didn't grow up in the West so this was my only experience. Last month we stayed a few days at a ranch in Utah where horseback rides were offered so my wife and I signed up. Mounting was not hard and we were given a very basic short lesson...and off we went. The trail was rolling and we went through a creek and up a hill and rode to the edge of a small canyon, and I was grateful that my horse knew which way to go and where to step. Once he broke into a trot, for a short distance and I hung on for dear life. Whoa!!!! It lasted three hours and as I did not fall off and I did survive...I say it was a success. As I dismounted, I was sore in places that I didn't know I had, and I was grateful that I had not signed up for an all month trail drive. My wife also went and she was terrified, but did as well as I. As I told one of the real wranglers..."My people used to ride horses like this, but it was about 120 years ago."
My other completely new experiences are very limited, and the only one that stands out in my mind is when I purchased a small chain saw and cut down a tree in my backyard. New experiences are good for us as long as they are within reason I think and I want to grow more by exploring other new areas! Now to retry again some past experiences that I have not yet remastered!!!
Update: 11 September 2007
A few weeks ago I added here my photo which was taken at the Delicate Arch which is located in the beautiful state of Utah, where we were on vacation. I have come to understand that by taking on very difficult tasks I can make progress in getting my health back and my confidence. I am going to tell you about the hike we made to see this sight, but I want to remind all of you that you should have the permission of your doctor before attempting very difficult tasks for the first time since suffering an AVM or an aneurysm.
We were touring some of the wonderful parks in Utah when we came to a stop for the Delicate Arch which is famous and is shown on the Utah license plate. We had no idea how far the arch was from the parking lot, but as the sign said to bring some water with us...we brought a couple bottles of water, each of which was about half full. It was the middle of the day and the sun was blazing and it was 104 degrees hot(fahrenheit). There were many families making the hike and we kept expecting to see the arch up ahead but all I saw was a large mound of smooth rock way up ahead which appeared to have little ants moving on it. As I kept looking at it I saw that they were people moving up and down the large mound and the distance made them look small. I told my wife what I saw and she said surely the trail did not go that far, but it did.
As we kept going it seemed to get even hotter and we attempted to rest a few minutes under the very small spots of shade we came upon. The others had the same idea, and we all got to be rather uncomfortable to say the least. Then as we continued we were also climbing the large rock mound which was not steep but was tiring. There were trail markers made from stones and sticks to show the way. After more walking and climbing we approached the top and you had to walk over a stone walkway with a high cliff on one side and a long drop off on the other side. The width was about three feet and then there we were with a beautiful view of the arch! It was worth it we all thought, and after a rest we begun the hike back down. The stone walkway was more difficult going back down as there were now people coming up as we walked down. I was very uncomfortable as since my AVM I do not walk in a very precise way and I am not nearly as sure-footed as I should be. I stayed near the edge until the other climbers had moved on up and then I had room to safely make it down. The rest of the way down was much easier and we were told that it was about a mile and a half each way. Going up the hills was what had made it difficult.
After this, at our age, we were pretty much finished for the day...and we did nothing else very difficult until the next day. After I had recovered I did feel better and things like this do seem to slowly bring back to me my health, lost to the AVM. This month we did go horse back riding again, here in the East, and I enjoyed this much more and we did not get so sore as the first ride made us.
Whether it is hiking or horse back riding or biking all these things seem to be helpful to us as long as long as have our doctors OK, and we have someone to be with us to help us just in case and that we can be there for also.
May God grant progress in our return to full health to all of us!
Update: 21 September 2007
I wrote last week about my experiences with hiking and horseback riding and the improvements that I think these have brought me. I should say more and so I will try to do so here.
My operation to remove my AVM was in 2002 and was in the back of my brain near, I am told, where facial expressions come from. When I got back home, I could not smile or laugh or make the expressions that we all take for granted. Those expressions I did come to make were not the ones that I wanted or expected. (Do not think that I stayed up late worrying about this, because I, like many of us, had far more serious health problems at this time to even bother thinking about this!) I can see all this clearly now in the photos that we made for holidays and for vacation trips. I was very fortunate in 2003 to win back my driver\'s license, but when I tried to smile for my new license it came out as a kind of sneer, enough to scare small children for sure. I thought this was very amusing, but I could not really laugh about it!!
My driving got even better with time and I do not even need glasses to do so, but my expressions did not come so easy. Finally on vacation in 2006, where I had to drive many hours at a time...I got my first photo taken which showed me looking as I should with a very small smile. This year on vacation all my photos look good, at least for me, and I am seen smiling and laughing like a real person. I guess I am a real person after all.
I thank the many hours of driving and also hiking and horseback riding, etc. and I also thank the Lord. Things can get better for all of us and hopefully they will.
Update: 4 September 2008
Like everyone else I miss Bill, and I appreciate the efforts of those who have saved the website from dying!
I am doing well and the few remaining deficits that I have all seem to be slowly improving, except for my vision and hearing. Since my AVM, my vision for seeing at a distance has been very good, and is remaining constant, but I do not see well things that are close up. Glasses for reading do the trick, but they drive me crazy and I refuse to have them with me every single moment of my life. I can read a restaurant menu, barely, without glasses, but if it is a romantic, poorly lit establishment, then I am lost without glasses!
As to hearing, I never was able to hear quite average, and now I am slightly worse off, so I do have my problems especially when background noises are great.
Last Fall, I got up in the night to let our dogs out and I fell in the darkness and struck my head on the foot board of the bed. It hurt, but not nearly as much as an AVM, and as I felt the top of my head, I was happy to find that at least it was still present in one piece.
After I got out of the hospital, I came home to my family and my dogs. Our two dogs were about as shocked looking as dogs can be. They kept circling me and sniffing my wounds. The larger one came to be my guardian and encourage me to come back so I could look after her I am sure! They are both still here with us, six years later, but they are showing their age as I also am.
I wrote before how I was told to do difficult things to help bring my health back, and last February, we bought a new sheltie puppy to raise and train. She has driven me crazy, but it does seem to help me to forget my problems so I can improve and get back to normal. Puppy is a joy, and a blessing.
I remember six years ago, coming back home and I couldn't walk a few feet without a person to help me or a wall to hang on to. Today there is a dog fence at the bottom of the stairs, a couple feet tall, and coming down the steps I will put my hands on the walls above that gate and swing my legs over it and land on the floor on the other side of that gate. To do this as I would have when I was young is a great joy.
The improvements are enough to startle me and I do sometimes wonder if they and the other unlikely things that I see are real or am I really in a coma in some home, imagining all the things that I see?!??
I pray for the best for all of us survivors!!
Update: 11 February 2009
My wife is a person I will always thank for helping me to get through my AVM and bleed. She cared for me like an angel, and prayed for me like one too.
Last week I was able to repay her slightly for her kindnesses. She was eating dinner and I had finished and was watching TV just around the corner from her in the living room...when I heard a gurgling sound and she came running in the room and pointing into her mouth. She coudn't talk, but I knew what must have happened so I did the Hemlich Maneuver on her...giving her two really strong hugs from behind with my arms. I was getting ready to do this again when a small piece of food popped out and she let me know that was all she needed. As quickly as the threat had come upon her it was gone and she was left still shaking like a leaf.
I wish I could also thank the Lord, and all the doctors and nurses who helped me and also all who prayed for me.
Thank you to all!
Also a few weeks ago I had a complete check up at my doctor's office, and I seem to have been given high marks for all categories. We talked for a moment about the AVM and she told me medical facts about what I had, things that were hard for a layman to understand, so I just told her that whatever it had been... that I would not recommend it to anyone. I also told her that even though I am getting older everyday, that because of my gradual improvements in recovering from the AVM, that I had the illusion of slowly becomming younger. She smiled and seemed to understand.
Can a survivor like many of us on this site have Post-Traumatic-Stress-Disorder? I think so. In many ways my body has healed quicker than my mind.
I pray and wish the best to all on this site!
Update: 28 July 2009
I suffered my AVM and cerebral bleed in early 2002, and this has now been seven and a half years. At first the problems were very basic and obvious, and involved things like surviving, and talking and then walking, remembering, overcoming fatigue, etc. etc. I went back to work part time about five months post operation, and within a couple months was back to full time. My supervisor and co-workers were very understanding and bent over backwards to work with me so I could function under difficult conditions.
Inside I was the same person, with similar talents and abilities, as I had been before my disaster, just as many of you are. But I did not outwardly appear to be the same, because my facial expressions were those of a retarded person. I think mine was worse because my operation took place in the rear of the brain, I am told near where facial expressions are formed. I could see this when I was photographed, but in my case my voice seems to have not been affected. I remember listening to a recording of my voice to see.
At first as I said, I was too ill worrying about surviving and the other more basic needs I had, than to worry about facial expressions, but as time went on and I suffered from near constant discrimination from those who did not understand...it became important to me to once more fit in with people at least in a small way. In time I was told by others on this website that large doses of exercises involving motion, like hiking, bike riding, jogging, horseback riding, etc. would help me to improve in every way from remaining deficits. I did not realize how literal a truth this was and how much it could help if a person was ready physically to do it.
In early 2007 I was at the point where I was wearing dark glasses so people would not notice my facial expressions, and I had noticed that large doses of driving, and hiking would bring me gain a great deal of temporary improvement and a smaller amount of lasting improvement. That June we vacationed half way accross the country and as my wife was not feeling too well, I got to do almost all the driving. The result was my expressions were much improved and I felt really good about myself and it all showed in photos of me. No more dark glasses. I knew it might not be lasting, and one day when we were back home, I was in the grocery and once again I noticed that someone kept looking at me. Oh no, not again, I thought...but then I realized that they were trying to read the message printed on my football team shirt!! That was the last time I ever had any more trouble with facial expressions! It is my hope that all of the family who have suffered with this problem will find the same result. God bless you all!
In April of this year I got another improvement. Before my AVM, I used to skip and trot down the stairs, not using any railings, especially in my own home. Well, all of a sudden in April...I noticed that I was starting to do this again. Only going down and only in my own home but it is something I never expected to do again, and seven years after! As the days went by I do it more all the time.
Things can get better, after an AVM or an anueurysm and if you keep trying it may also come to you even if it has been years!!!
Discussion, comments, or questions: John Parsley
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