Recovery-Healing-Me You Now
Seeing the recent questions on recovery by TJ, Mel, Jody and others, find hope, do whatever it takes to fill your soul, your spiritual well.
I have been in ‘recovery’ almost 4 years now, since first aneurysm rupture and coiling. The coiled aneurysm continued to grow, so I had craniotomy clipping surgery fourteen months ago. My carotid artery also bled during that surgery and was stitched; I was told it was a “pre-aneurysm”. I have a third aneurysm on my brain stem that has not grown and being monitored.
I call myself a dinosaur because I still write letters and make phone calls, and had to adjust to technology, texting, and Facebook! I live on a small island and am so grateful for the community and support here. I really appreciate this online support group, nobody really understands what we are going through until they’ve experienced it themselves. We don’t necessarily show our struggles or deficits. Just like I can empathize with my friends going through cancer, but I don’t really know what they are experiencing. Some days I feel glad I have aneurysms rather than cancer!
It’s been quite a journey, this healing path. I have, am going through a grieving process; denial and isolation (I’m not going to share this, I’ll be fine), anger for a long time (at myself for smoking most of my life and not knowing family history- I’m number 12 and one of the few to survive), bargaining (if I do this or that I’ll be fine), depression (and frustration) for a long time too, guilt (times I wished I had died and not had to go through this fight), now acceptance.
What has helped me? I am feisty, stubborn, and independent. The feisty and stubborn have come in handy, I won’t give up (most days:)
I question and fight the medical system, seek out diagnoses and treatments for my deficits; skull and neck healing, memory loss, eyesight, vertigo, foggy brain days, fatigue, retraining my brain. I’ve learned to pace myself and my activities. I read (slowly) inspiring things like the book “My Stoke of Insight”, and the “A Letter From Your Brain” I found here has helped me enormously. I read it often, especially on those down days, and shared it with my family and friends. I will copy and paste it at the end of my thoughts.
The independent part has been harder, I had to put my useless pride and ego aside and ask for help. I think I needed this humbling.
I think I was angry too because I have few regrets on the choices I’ve made and how I lived my life. I had a wonderful life before this happened, I loved my work as a Marine Educator, Naturalist, Tour Guide, Boat Captain. I loved where I lived and worked, I became a grandmother months before the aneurysm burst. I had a difficult time realizing I can’t work the same anymore, I can’t get dive certified, and I couldn’t care for my grandson like other grammas. For a long time, I didn’t want to share in my island community, afraid it would affect my work opportunities, and it did.
Who am I now? Until recently, I would say it was a full time job just being me. Putting my health and needs and ableness first. And I did. My occupational-speech-physical therapist is an angel! I think she has also been my psychological therapist, I highly recommend counseling to help deal with our life changes. My all in one therapist has gone through dealing with her own life threatening, life changing challenges, so she has compassion and empathy. I volunteered very part time this summer and restored my confidence- I still know things! I can still share my passion for our ocean ecosystems! If I forget something mid sentence, it seems to be a minor thing and people don’t notice or mind. I started to take more walks out in nature, dance a bit to music, do some modified yoga, which all fill my soul and spirituality. I think it’s important we nurture ourselves. I went to more events, science lectures, things I’m interested in. I realized I am getting better when I had a focus outside my head, outside my space. I write, not as much I used to, but a journal that’s like venting for me, and I started a second journal to remember the good days, the simple joys. So I can see I am getting better. With the volunteering I realized I can still contribute, my education and outreach work can still be purposeful.
My personal mantras are; I am adapting, adjusting, overcoming, compensating, accommodating, determined and perseverant, accepting with hope and grace. Show up with a positive attitude, prepare for the worst, hope for the best, with few if any expectations, and sometimes magic happens!
One day, it was like I had an epiphany. No I am not the person I was before these aneurysms got my attention. Nor am I the person I was when I was a child, or a teenager, or a wife, or a mom, or a career woman. It’s our bodies, our personalities that change throughout our lives, but our souls and spirits, who we really are, remain steadfast, eternal. I am still me.
Thank You for your help,
Love, light, healing, hope to you all :)
Humbled, thankful, grateful, Karri
A LETTER FROM YOUR BRAIN
Hello, I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.
I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
Love, your wounded brain ©1996 Stephanie St. Claire May be reprinted for personal, not for profit use. ■■■■■■■■■■■■■■■■■■ Contact me if you have any questions or comments.
