The two main types of support I found helpful were:
1) Family and Friends
2) Support Groups
To Family and Friends of Severe Aneurysm Rupture Survivors,
It is important to realize that just being there is incredibly healing. While I was still in ICU, in and out of consciousness, I may not have remembered your visit but, I know you were there pulling for me. Here is what a friend of mine wrote in an email after visiting me in ICU:
I got to see you! It was a wonderful, yet heart breaking experience. Sharon
and I arrived to find your mom and godmother by your side. You were asleep,
but I was offered a few minutes just to be alone with you.
I spoke to you for little while, touched your right forearm, and later left
to go speak with your mom.
I returned a bit later to say goodbye and you surprised me by opening your
eyes and looking at me. It was wonderful! While I think you may have
recognized my voice, you did not recognize my face so I kept the dialogue
light and soon offered my good-bye for today.
I have been lucky to have very dedicated and caring family and friends that mobilized for my recovery. My family put together a poster board of color copies of photographs. As soon as I was cleared to eat, I could not get enough orange jello so my friends and family helped procure orange jello from the hospital staff for me. Once a survivor has been cleared for eating and drinking, bring in little morsels to share. My Mom brought in a cd player, some of my cd’s I had in my car. A friend brought a fluffy, soft robe, another brought a big stuffed animal. You are never too old for a stuffed animal. My boyfriend painted my toenails and rubbed my legs with rubbing alcohol, then lotion because my legs were cramping and in a lot of pain. For some reason, hospitals do not clip fingernails. My family and friends cut and filed my nails. My sister shaved my legs. A friend tweezed my eyebrows and I hope my chin hair, lol. My boyfriend phoned all the people on my contact list in my cell phone because my sister did not feel up to that. A friend of mine was shocked to receive a phone call so late from me and when a man spoke that something happened to me. Worried, she was thinking “who are you? And, what have you done with my friend?”
Puppies and Rainbows. Keep conversation light and positive. Do not involve the survivor in squabbles or let them know the sky is falling. It takes a survivor every ounce of energy to focus on healing. If the sky falls, the news can wait. Tragedy will either bring people together or drive them apart. In my case, I saw a little of both.
I had no idea what happened to me and why I was lying there in a hospital. Having people around me that I knew helped comfort me.
Continued support from family and friends is important. I had an influx of support while as an inpatient. I really learned who my friends are. I have shed a few people who I once thought of as friends or acquaintances but learned otherwise. After I was released, with the exception of a few treasured friends, it has been lonelier. Friends work, get busy, but even sending a warm email or card can do wonders.
About Support Groups:
Support Groups are important. I have tried a few. What I have found is that I do not identify with many survivors because their injury was different or, not as severe. I have searched for survivors like me by reading survivor stories on the internet. I tried a Brain Injury Support Group but, most of their members had a brain injury from some sort of accident. I have also tried a Stroke Survivor Group and a Young Stroke Survivor Group. An aneurysm rupture is a form of hemorrhagic stroke. In my opinion, although, an ischemic stroke produces similar deficits, the experience between the two types of stroke survivors is very different. I belong to a marvelous group, the UCSF Aneurysm and AVM Support Group. They meet monthly and bring in guest speakers. There is a wide range of survivors who attend this group, some of who have had some similar deficits as me.
My injury occurred in 2007. I feel that I missed the social media support groups due to a technology learning gap. A few survivors I know find social media groups helpful because you can connect with other survivors in the world.
In the time of the 2020 global pandemic I find virtual support groups helpful. The AVM and Aneurysm Foundation and Brain Aneurysm Foundation have support groups from around the country listed.
I am a huge fan of the annual Aneurysm and AVM Awareness Walk at Chrissy Field in San Francisco. It’s a great day to meet many survivors and caregivers.