Who knew that a life altering and life threatening event would show you who is really here for you. Since my craniotomy in February 2015, I have spoken with other people who have suffered some kind of debilitating illness whether it be an AVM, leukemia, cancer and the like. Most of them seemed to have experienced something similar. The people you love most cant handle it. You quickly learn who is really here for you…who is able to think outside themselves for one single second. And then there are others who disappear…not because they dont love you but because they are too weak to put your needs above their own.
Going through my own experience, I was surprised to see an entire forum or discussion on here with AVM survivors who also had to survive divorce. My AVM was pivotal. I had the opportunity to take a harder look at my life. And when I woke up with a 12 inch scar wrapped around my head like a head band…it gave me perspective. Being alone in the ICU for 4 days also gave me perspective.
Not too many people will be able to relate to you. Some wont even try. But there are a few deeply compassionate individuals that you cant ever thank enough for being there for you when you needed someone. Hang on to those people.
This support group got me through one of the scariest times in my life. No matter how alone you feel…please know that you ARE NOT alone. Read each others stories…give support to others…as giving to others will invite healing and prosperity. Its surprising to see how many other people have it SO much worse than you. Gratitude for this life event is humbling. And if you can afford it…I would highly recommend talk therapy with a counselor who can help you move past this. Sure…you’ll have a surgical scar…but the emotional and mental one is even deeper. Take care of yourselves. And best of luck to anyone who needs it. Message me if you need someone to talk to…
I am in my early 60’s never married but had some long time friends. Two years ago I started to lose my balance and trip and walked like I was drunk. I would go to put my foot down and it would go completely where I didn’t want it to go. I got to the point I couldn’t even stand to get off the couch. After going to emergency twice and seeing my family doctor who said all that I needed was physiotherapy I finally had to call an ambulance. I was lucky I saw an emergency doctor who sent me for an MRI on my spine. She came to me and put her arm on my shoulder and told me that I had a spinal AVM and the only option was surgery. The next day I was assigned a neurosurgeon who was very knowledgeable and kind which doesn’t always go hand in hand. He told me that they were going to do an embolization but unfortunately that didn’t work so I had to have a 7 hour open surgery and several verterbrae removed from my spine. I was in the hospital for three months including rehab. I can walk somewhat with a walker but I have no balance so I can’t get up without use of the walker. I cannot do 70% of the things in the apartment that I use to do. I cannot let go of my walker so going anywhere with steps or non handicapped places are out of the question. I live in Canada so going out in the Winter with all the ice and snow is not an option. It has been a year and a half now and I can’t believe the friends that I have had for many years have disappeared because I am too much of a burden. I try to do everything for myself but I do need help in some areas. I have some friends that are still around but boy you sure find out who your friends are. There is one friend in particular I have had for over 40 years and he won’t call me and check up on me or do anything for me. It is really sad how people treat you when something devastating happens to you. In some ways it is like I got a divorce from my friends just because I became ill and unfortunately the damage is permanent. I do treasure the friends that have stuck around.
Wow Pattycake…Im so sorry to hear this. I cant imagine the pain of having to lose mobility and then to also lose important people in your life. But for the people who stayed…cherish them and tell them how much you appreciate them. They are your true family. And your friends here in this support group understand. They can give you the validation and support that you need to carry on. Hang in there.
It’s amazing sometimes how we earn who those are that truly care about us. In cases like ours it is certainly not by choice, but by things beyond our control. I think of people getting in disagreements over sometimes silly things and moving on, so be it. When there is a health condition beyond our control it speaks direct to character, while upsetting and sad, it speaks volumes. Its disappointing to hear these stories and while in this community we are connected by relative anonymity people understand and care. This is why this community of others in similar circumstances and often similar experiences is a great place. Take Care, John.