Thank you all. What beautiful words you share with me. I am grateful to have each og you in my life!
A great post. I never had a bleed but I had embolisations and surgery to remove a large cerebral AVM. I got depression and epilepsy as side effects. I miss not having to take pills for both of these. I miss the person who I know would have had problems when I started work (I have anxiety, not a side effect) but probably would have coped without the depression and be doing at least some paid work. I was āluckyā to not have any physical deficits (I already had some from birth). Maybe with the depression tonight I donāt feel as lucky as I sometimes do. I havenāt lost friends because my social anxiety meant I didnāt have any before.
Thank you. What a beautiful post!
Lori,
My son, Colin, was 20 when the golf ball sized AVM in his cerebellum ruptured. His neurosurgeon told me he didnāt know how Colin didnāt die that day. BY Godās grace, though, he survived & I brought hIām home 13 days later. Although I knew he had a ling recovery ahead of him, to me I thought the worst was behind him. And in some ways it was. But as he grew stronger & began venturing out into the world again, we were in my car driving along and he told me something that I comprehended but did not really understand. Or at least I could not relate to, and I have come to accept that only a very small percentage of the population COULD. After I read your post, I believe you are one of those few. What he said to me that day was this: "Itās so weird, Mom. Everything is different. I know where weāre going, & I recognize it all, but itās all different. Itās like Iām seeing & experiencing it all for the first time, but again. I will never be how I was before. I canāt explain it, but that me is gone, and now, this new me has become my ānormalā."
I knew then that although my brain comprehended WHAT he was saying, I would never truly understand as he did. It made me feel helpless and Iām sure it has made him feel isolated and different, at least to some degree. He has always been grateful to still be alive, and he has adjusted and is as near to fully recovered as he can be. That is amazing and enough for me, and I suppose for him too. He is 25 now and he and his wife are expecting their 1st child any day now. It is bittersweet, I guess, for lack of a better word, and you are the first survivor who I have heard come so close to describing life now as he did.
Thank you for sharing. I wish he could talk to you himself. I donāt know why, maybe just because as humans, itās important to us all to feel that we fit on somewhere, somehow, on some level. Anyway, I wanted to thank you and say I didnāt know the you that once was, but itās wonderful to meet the you who you are today.
Take care of you!
Inga
Lori,
Thank you for your honesty, you took the words right out of my mouth. How true, we can't live in the past, even though the energy level is no longer there, it's a constant reminder. Reaching out in this way, always confirms to me that we are not alone.
Susan
Lori, what a beautiful post! You have a wonderful talent and God has given you another life. Like you, i miss me, too. I did that for a few years after my brain surgery and as the years passed, i came to realize that i have changed. My other friends say i had become aloof, snob, etcā¦ but i have anxiety when i am in a big crowd and for sure people probably talk behind my back. i have learend through the years (and it has been 13 years since my surgery) that there are some people that donāt deserve your attention anyway. Iāve learned to keep those friends who are my real true friends through thick and thin and who understands me and accept me the way i am nowā¦
Take care of yourself and continue with your posts. It is also part of therapyā¦ as the years go by you will be able to look back and see how much you have progressed and how much you have changed to a better and mature personā¦ the new YOU!.
Lori, I so understand and I so agree:)
My life would have been totally different w/o my AVM and all it brought with it. The bad: I am no longer the successful professional I once was and my earning capabilities have gone from very lucrative to basically, minimum wage (if I can find something to do for cash that is not too dependent on cognitive function because Iām on disability). BUT, even though Iām no longer a powerhouse, my Husband is still with me and loves me, my daughter is in college and understands and adores me and even though I have lost some, I still have many friends. Itās been 12 years for me, but I still see improvement in my cognitive function and I still have hope for the future. I do believe that neuroplasticity is real/ true: the brain continues to create/build new neural pathways for many, many years and continues to repair and regenerate itselfā¦ I see it with myself all the time. The only hard part for me is when I let other peopleās ignorance about my condition affect me and my own self worth. We, on this site, are all so very, very lucky to be alive. All that has happened is that we now all have a ānew normalā to adjust to. For me, this new normal brings its challenges, but I wouldnāt want to go back to who I was. Iāve learned too much spiritually. And Iāve learned who my tru friends are and what love is really aboutā¦ Youāll do great!!! You sound like an amazing woman with so much insight :). Hugs to you and hurray for all our futures! 
Thank you, Lori, dor writing this. I know that it took strength and courage to do so! My AVM situation is not as severe but I can most definitely relate. I look back at the "old me" before my diagnosis of an AVM and aneurhysms in my leg and have a sense of sadness. I am also proud of what I have gone through and have come out. But those negative feelings and "why me" are still there and eat away at my positivity and gratefulness from time to time. Your post was just what I needed today. I love that we can be so honest on this site. I have learned that it is very difficult to do so in the real world. I have also grown tired of the "You're so lucky" comments or "You look great!" You are walking good". I am very blessed and I feel happy to be walking normally again after my procedures and bypass surgery but the pain, swelling, bruises, and massive scars are still there. I cannot do things I used to once do, such as squat down at a moment's notice to tie a student's shoe..and I miss that. I usually feel better after a good private cry as I am sure you do as well.
Continue to smile and feel grateful for the old you as well as the new you! I will keep you as I do all AVM survivors in my thoughts and prayers.Thank you again for the beautiful post and for helping me realize again that we are not alone and are not silly for our thoughts and emotions.
Lori,
This is one of the most beautiful things I have ever read. I donāt have many deficits, and thankfully I did not have a rupture, but I do have chronic headaches and much neuropathy in my shoulder and my left arm. But I have changed a great deal since my surgery. My AVM was in my cervical spine and right after my surgery the nurses checked my blood sugar every couple of hours for several days (apparently altering the way blood flows can cause changes in body chemistry) among other things. I used to be very talkative, energetic, and outgoing. Now I am very quiet and it is hard for me to even keep up with daily household chores. I miss the old me very much and although I am grateful that I am alive and that I have all my faculties I wish that I could get back to my old self. Thank you so much for your wonderful post and I wish you the very best.
I miss the old me every day. I have learned not to think about much anymore. Before, I would be reduced to tears as I mourned the loss of my old life.
Before the rupture, I was living my dream. I spent my entire life training to be a pilot. Sacrificing personal relationships, and moving across the country. All to achieve my dream. Now I was making it.
At 42, I was a senior, successful, well liked captain, at American Eagle airlines. Now Envoy. I had earned type-ratings in the Saab 240b, EMB-145, and the B-737. I lived an very nice life-style. Usually working some type of four on, three off schedule, making very good money. I lived in a nice house in a part of Dallas that I enjoyed very much. I had a good circle of friends, and dated often. I own a 1959 Corvette roadster that my dad gave me, after he bought it some 20 years ago. I enjoyed driving it to my favorite pub for a couple of pints, and on Saturday night, taking it to a local drive-in burger place for dinner, and an unofficial car show where one could see any car one would want.
After the bleed, I lost my medical certificate, and my career. I learned that while I didn't wear my career on my sleeve, it was a huge part of my identity. Something I still struggle with. I had to find a new job. I would work for AA as a part-time Weight and Balance planner. To say it was a step down is a bit of an understatement. I hope to be hired as a dispatcher in the near future. It's difficult being near the airport, and seeing the various jets fly overhead, knowing that I will never fly again.
Another thing that I lost was my independence. Financial, and otherwise. While I am know full-time. I do not have my financial independence yet. My house payment is made by my father. I live in a nice home near my family. Not what I had in mind.
I used to worry about my happiness back then. Now I know how happy I was. I know things could be worse. While the brain surgery removed the AVM, I am left with double-vision. Something that while it has been diminished with surgery, it is still prevalent. I can drive, but I do not enjoy it, and try only to drive when I must. Dating is out of the question.
I try to be grateful for the abilities that I still have, but it is difficult. I am learning not to compare who I was, with who I am. I do not know when I will feel happy again. It seems that it will take time. I have learned to accept this new me. Don't like him much, but am getting used to him. Perhaps I will write a book about my experiences.
Greg
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I enjoyed reading your post. I completely understand. Greatly said. I sometimes wonder if the AVM changed me or everything that I went through changed me. I am not that woman any more. Although I miss some of me. I also am grateful for what it has made me. I am stronger and I show my family how much I love them all the time. I was not that way before. I hate that I have terrible spelling and can't trully help my elementary children with thier homework. As they learn I am still learning also, I don't think I will ever learn all the words I don't know. I had to go to speech therapy after my surgery and it has been along time since my surgery but yet sometimes I still don't know the words for certain things. And while other people who never new me before might just think I am not very intelligent. Those who trully love me still love me just the same. I am still me inside and still feel the same way yet I went through so much and I am grateful I am still here. Thanks for sharing your feeling with us. I think we all feel like that at times. But you are still you! You are brilliant!
I have never read anything more true and beautiful than this post. Said so well, brought tears to my eyes and my husband. He did not know the "old me" that I miss - wishing I could have shared with him. Before the AVMs, life was so different. Never could have imagined this disease with no cure. Having others out there that are like me, gives me comfort and support, to know you are truly not alone. Thank you for sharing this. I have printed it and will keep it in my Bible to read often.
Beautifully conveyed, Lori. Thank you.
There was definitely a point where I missed the old me. Now, I focus on my new me.
I recently took a writing course which suggested to write our old story, then let that go, allowing room for our new story and beliefs.
It helped me a great deal to do this exercise. Sometimes we donāt realize the old story that we lug around and try to get back to.
I wish I had better words to comfort you other than "I understand", but I do. It's very easy to fall into despair. it can make one feel safe in it's own very strange way. Have you truly mourned the event that lead you here? It's scary but cathartic. From your photo I believe you to be a woman that can experience the joy of what life has to offer. Your smile is very genuine. In times like this can you tap back into that energy? The old you is still there, just waiting there for you to find it. For all of us when we reach a point like this we have to realize that while we can be worse for wear, but we are still there, somewhere.
I can relate. There are many times that I miss the old me, but I'm slowly growing to appreciate the new me.
I feel that the new me is more compassionate, after going what I had gone through, and going through it while losing friends, and having some members of my family distance themselves from me. I try to me a little more sensitive to those fighting their battles, because I know what it is like to have people judge me and not fully understanding my battles.
As far as the old me goes, I miss being able to drive - I'm slowly accepting that I may never drive again. I miss how I was able to handle a full-time work schedule as well as a 10-12 hour school schedule, and still excelling. School has slowed down for me now. I'm not sure if I can handle a real job these days. :-(
I miss that the old me was not self-conscious. I was extremely self-conscious after surgery. I feel as though I have improved on it, but I still have my moments, and I still have to work on that.
I lost a lot of friends because of this experience, but on the other hand I've gained new friends, most of them being AVM survivors who remind me of the positive so I don't dwell on the negative.
I don't know what the future holds for me, but I hold on to the face that I survived for a reason. I hold on to hope that I will figure it out one day. Lori, you survived for a reason, too. Wishing you the best in this continued journey. *Hugs*
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Well said...Thought I was the only one who felt this way...missing the old me, wondering if she was coming back.
I had the AVM bleed and cranio over 50 years ago. I was 8, so I just remember the me when I was a kid. I was a really happy kid, and my memory is so good about times before AVM. I know I was not happy like that ever again, but only recently wondered how my life could have been without the AVM. But I do not live thinking about how things could have been because Iād rather try to stay in the here and now, and not the past or future.
beans
Lori -
What a powerful piece of grief and acceptance. Your writing shows the work you've done on moving through your loss and moving forward. So sorry for that loss, kudos on your strength, and thank you for letting us see a glimpse of it.