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AVM Survivors Network

Change, make change, be the change

#1

Change

I’ve been thinking a lot about change lately.

Change because we just “remembered” my Dad’s second birthday in Heaven.

Change due to this three lettered monster - AVM.

Change due to physical limitations caused by this thing.

Change in relationships - because often you can’t see an AVM and if you can’t see it, people tend to overlook it.

Change in capabilities - there are things I would love to do, but I just can’t.

Every single one of us, whether parent, patient, spouse or sibling are all dealing with varying amounts of change due to the three letter monster.

So, if you are crammed in the box (as opposed to thinking outside the box) and you can’t seem to get out and you’re getting hot and hungry and well you get the picture……

What do you do? There’s a tiny little “peephole” in the box and you look out and see people standing around enjoying themselves.

“I want to be where they are!”

The Vanderwell 7 Step Challenge for Change. I am writing this, not to you, not for you, I’m writing this for me.

But feel free to share it - just make sure I get listed as the author - I will probably put this on my own website too, not sure on that.

Anyway, back to the bigger picture. I am writing this because I need to work on dealing with all of the changes this thing has thrown my way. Just so you can get an idea, I’m going to list, in one word phrases, the areas of me that have seen significant change: 1) Brain 2) Neck
3) Head 4) Eyes 5) Ears 6) Tongue (left half only) 7) left side of my face 8) Left vocal cord and the area above and below it 9) Lungs 10) Tremors in my left arm and hand. Whew, now imagine what a long explanation of that all would be like.

The 7 Step Challenge for Change - 7 things to do to impact the direction and control of your life.

Step 1 “Acknowledge the Enemy.” Verbalize and write down what you’ve lost. Share that with people or keep it in a box and never open it. If you can list off what you’ve lost, it will be easier to move to step 2

Step 2 “I am bigger than my AVM.” You are more than your disease. You are more valuable than what you’ve lost. Just because you have this disease, you don’t have to let it have you.

Step 3 Set realistic goals - but have at least 2 goals every day. “Today I’m going to clean the kitchen and take the dogs for a 10 minute walk.” Give yourself something so you don’t sit around feeling sorry for yourself.

Step 4 Realize that not everyone but for many of us, this can be an opportunity to branch out from the “things” you used to do.

Step 5 Do something for others. I believe that most of us can find somewhere where we can do something for others. “But if I do more than 3 hours a week, this happens……” Well, then if that is something you feel good about, do it for three hours a week.

One of my favorite stories comes from the Ronald McDonald House in Cincinnati. We were there because my daughter has a heart condition. Tuesday morning we were eating breakfast and an older gentleman came up, warmly greeted us and asked if it would be okay for him to join us. It was, he did, and I found out that he is an official Ronald McDonald House volunteer. His role? He spends 4 hours a week - from 6:00 to 10:00 AM drinking coffee and talking to people in the kitchen. Answering questions, finding directions, being a shoulder to cry on, maybe even just a little bit of normalcy because life in a hospital isn’t normal.

His job requirements? Friendly, outgoing, likes to drink coffee.

Step 6 Realize there are times when you will slide back and that’s okay. One of the biggest things that has helped me through this and through the struggles of adoption is the concept that “It’s okay to not be okay.”

Step 7 Tell your story. Because someone, somewhere will be encouraged, strengthened, not feel so lonely by reading your story or by listening to it.

Whew, that took a bit more than I expected!

TJ

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#2

Hi TJ, I hope things are going in a good direction for you. Thanks for writing that article (for lack of a better word.) Change is a rough one for me and I usually have to be dragged kicking and screaming to change anything, even little things. Mostly it is sheer stupidity and stubbornness. Why else would someone persist in a hated job that one stinks at? (It took way too long but we finally parted ways.)
The good news is that I am succeeding in developing the skill of patience. I don’t anger with myself and others quite as easily. This emotional dimension has been a rough one for me because of the AVM/craniotomies/epilepsy/meds. For example kepra caused bad impulse control and mood swings and had long term negative effects on my life.
How do you deal with change when you know that you yourself might go off the rails at any time? One tool/technique I’m trying is to break things down into small frames when things start going south. Self-talk like, “ok Greg, let’s be calm and detached for an hour, or if that doesn’t work, break it down to a minute.”
Be well, Greg

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#5

Just had another thought about something I’ve learned in terms of dealing with all of the stress and change with all of this. I’ve learned to realize more frequently when my brain and my emotions are doing well and when they aren’t. I’ve taught (as much as you can teach teenagers) that if they push and push for something right now, there’s a much bigger chance that they will get a “No” for an answer. But if they wait until Dad’s in a better place and a better frame of mind, and then try to have a discussion rather than an “I want” attitude, it increases the chances of it being a productive conversation. They have learned (not all of the time - I mean really) to talk to Dad about how he’s doing and when and how would be the best time to talk about something. “Hey Dad, I have something I want to ask you about next Saturday, is your head doing okay or should we wait.”

And then I also give myself the ability to say, “Okay we’re just going to set that issue off to the side for now and not deal with 4 things at once.”

Now if I could get my mom to do that - she texts me almost every day asking how I’m feeling and it’s usually 4 or 5 questions in a text message. “Mom, my brain can’t handle 5 questions at once in a text message - e-mail it to me and then I can respond under each question.” I don’t begrudge her texting me - Dad’s only been gone a year and she’s struggling with the loss, with the loneliness and with trying to grow old gracefully when you have no one right there with you. She will be 82 in July - I have a hard time remembering the actual year, but I think that this would have been their 59th wedding aniversary this coming June.

TJV