Someone close to you not understand what you are going through?

I see this every one in awhile on the forum here, and recently received a private mail from someone who said (paraphrased) “I’m scared, and my husband just doesn’t seem to be that interested in the AVM and supporting me. I don’t know how to get him to see what I’m going through.”


Well, first, almost all men, me included, are jerks when it comes to emotional stuff. It makes us nervous, we don’t know how to deal with it, and we’d rather see it just go away (not the women, just the emotions).


But it is more widespread that just stooopid men. Think of anyone (or maybe you) who drove around the block six times before you stopped to console a hurting friend, afraid you might say the wrong thing? Or failed to be there for someone cuz you “wouldn’t know what to say”?


It dawned on me last night that two different places I’ve heard a tremendous way to approach these situations. First, when our kids were in 1st grade twenty years ago, in an effort to diffuse all those little squabbles, they taught the kids to use this tool:


I feel (insert an emotion) when you (insert an action) and what I would like you to do is (insert an action). Now they couldn’t use it like “I hate the way you look and I would like you to drop dead!”


The next time I heard the mention of this tool was in a marriage enrichment class we took and later taught. It was the same tool for the same purpose, only to express to your spouse how you were feeling and what the originator would like to happen. Used properly, it should be non-confrontational.
Here’s an example I dreamed up:

Wife: “Dear, I’d like to talk with you this evening for a few minutes, when we can focus on a concern I have.”


Man hopefully says: “Ok, right after dinner, ok?”


After dinner, Wife: “Dear, this has been bothering me lately. I feel scared and aloneness when you seem to not understand what I am dealing with with my AVM. I feel nervous, and what I would like you to do is spend some time discussing my fears with me on a weekly basis.”


Man’s typical response: “Well, you shouldn’t feel that way—I care and you shouldn’t be nervous. Don’t feel that way!”

See, here’s the beauty of the tool. You cannot rationally argue that the feelings of the other person are wrong! The feelings are the feelings. Yes, they might be feelings over irrational things, but they are none the less, YOUR feelings. You have them, and you are proposing a method for your spouse to help YOU in dealing with your feelings.

So a good comeback might be: “I know you don’t feel the same way as I do on this. But I am trying to explain how I FEEL, and I feel scared. If you work with me on this, I might be able to change the way I feel, or have you understand why I feel the way I do. Can we work together on this please?”


Now if you are planning to use this tool, I would encourage you to WRITE down your feelings, using the tool’s exact wording. You might even write this in caps on your pc and copy it several times on the screen, then fill in the blanks:



I FEEL ___________________________________


WHEN YOU _________________________________


AND WHAT I WOULD LIKE IS ____________________________


Then fill out as many as you need to convey your concerns. You might start with a lesser emotional one to get the process going with your spouse.


And it also works on the positive side: “I FEEL such happiness WHEN YOU work with me on projects around the house and with the kids AND I WOULD LIKE YOU to keep doing it. It makes me feel so good!”


Hope this helps. I can’t take any credit for developing these tools, just tossing them out hoping they might be of benefit.

Ron, KS

Great tool Ron! Thanks so much for sharing. I know of members who can certainly benefit from something like this. It all seems so easy when it is outlined like this.

I have the most wonderful husband and have never felt alone or unsupported. I’m very lucky. But of course we all have other people in our lives that aren’t sure how to help us. It’s uncomfortable for them and they don’t want to do something wrong or add to our burden. I can see how stating things in this format would allow them the relief of knowing just what they CAN do for you and to follow your lead. May end up being just the kind of input they need and are looking for.

:slight_smile:

Ron, I’m glad you posted this. I believe this to be beneficial in many ways. I hope people take the time to read this. I agree with you… us guys, aren’t often the best at handling emotional issues.

Ron,

This is an excellent tool to pass on to our members, and one that is actually a very workable concept.

For a very long time I’ve said that I think we should be teaching basic communication skills and tools, beginning when we’re very young (kindergarten at least). So many of our problems with each other stem from either lack of communication, or poor communication. To this we add the ways that people commonly use to communicate with one another these days - typing on the computer rather than face to face conversations for example, and the ways we have of misreading what someone says, or means, multiply. We can’t even look into the other person’s eyes, or hear the inflection in their voices. When we get the communication connection going it’s amazing how clear so many things can suddenly become.

Like Shalon, I’m very fortunate that my husband, the person I’m the closest to, has always been very understanding and supportive of my situation with the AVM and aneurysm. I think the other important people in my life have done the best they know how to to have an understanding, each in their own way, but still some have no idea what my day in and day out life is like with this. But I know they still care, and to me that’s really the important thing. This condition and all that goes with it isn’t an easy thing to understand, at least not for those who aren’t personally experiencing it. So I try to give them all a break.

I know though that there are some of us who have people in their lives whose lack of understanding is on a whole other level - just really lacking, and if they can use this kind of tool to convey what they need others to know so that they have the support and acceptance we all need to deal with this, then it will make this journey so much more bearable.

Thanks so much for thinking of this and making this post Ron - I think it will be a huge help to a lot of people.

Ron,

First, I think your tools are a great idea and have a lot of ways to help. I plan to try this with my husband.

Second, while it’s helpful in that respect, it also lends itself to the overall ignorance that people have for any disability or challenge that is not physically visible (brain injury, autism, etc). If you “look” normal, then you are normal. Period. My own parents refuse to accept that their granddaughter has some cognitive difficulties because of her AVM. I tried explaining one night and finally decided that the nitty gritty details are going to remain private. That’s fine, although it leaves me alone to handle all of this without being able to lean on my parents for emotional support.

Thanks, Ron.

– Tina

Ron… this was very thoughtful of you to do. Thank you b/c some times I can sure use this with my husband! This AVM journey has taken a toll on our marriage, due to his lack of communication on the topic. He prefers to with hold his worries to save me stress. This will be put to good use for me and many others I’m sure. Thanks again big hug Andrea

Ron,

I was thinking 5 minutes ago those very thoughts. Thanks for taking the time to write. Erica

If my husband sees me gettig upset, he tells me. You need to be stronger, stop crying it isn't doing anyone any good. WHAT?? I feel the way that I feel and if crying at the time is the only way I have to escape at that moment, I am going to cry... maybe not even stop. Why not nothing else stops?? It just keeps going. Sorry, had to get that out! I feel really bad righ now, Like I am not a good mother, wife, sister. I know I shouldn't~ I am just so confused! THey let me out of the hospital and I still don't have any answers and I am in so much pain!! What do I do? Oh yeah, sorry for my spelling. I am really trying to catch that!

Heather,

Sorry to hear that things aren't going well.

One of the things that a lot of us face is that the AVM victim "looks" normal. I you saw someone that had been in a car wreck and was in bandages from head to toe, everyone would understand and respond appropriately.

The reality for an AVM patient that has had an event or treatment, is that their brain has been involved in a massive train wreck--only it doesn't show on the outside...................... They think 'you look ok, so you must be ok', only that is not the case. A term I've often heard used in association with AVMs is "Massive Brain Trauma"--and that sums it up pretty well.

I've heard people say they are getting a t-shirt that says something like "AVM is the reason I'm the way I am" or some such writing.

Hope this helps.

Ron, KS

Heather Bernett said:

If my husband sees me gettig upset, he tells me. You need to be stronger, stop crying it isn't doing anyone any good. WHAT?? I feel the way that I feel and if crying at the time is the only way I have to escape at that moment, I am going to cry... maybe not even stop. Why not nothing else stops?? It just keeps going. Sorry, had to get that out! I feel really bad righ now, Like I am not a good mother, wife, sister. I know I shouldn't~ I am just so confused! THey let me out of the hospital and I still don't have any answers and I am in so much pain!! What do I do? Oh yeah, sorry for my spelling. I am really trying to catch that!

Thak you Ron. I too have been going through this for the past 6 months with my son and fiancee’. I am tired. I am scared. I am ready to leave, then I found a Neuro Phsycologist who specializes in AVM recovery. I do beleive she might just save our family. I tried the “tool” but the men in my life are used to me fixing everything and this I can not fix for them. I need them now more than ever and it freightens them. My Dr. is a huge help. The boys have had 1 visit so far and it seemed to give validation to my feelings and concerns. Thank you for your help and if others need more than that maybe they should look into some other kinds of help as well. Happy Holidays!

I agree that it is hard that AVM victims "look" normal. I have many side effects from my gamma knife and when I say I can't do something (such as ride a rollercoaster) people just tease you and you feel left out. I almost feel like when I meet people I have to explain all my side effects and why I can't do things, otherwise people think I am a boring person.

I'm very cautious about what I do, but my AVM is not completely gone, so I feel like doing a lot of things are not worth the risk.

Ron, KS said:

Heather,

Sorry to hear that things aren't going well.

One of the things that a lot of us face is that the AVM victim "looks" normal. I you saw someone that had been in a car wreck and was in bandages from head to toe, everyone would understand and respond appropriately.

The reality for an AVM patient that has had an event or treatment, is that their brain has been involved in a massive train wreck--only it doesn't show on the outside...................... They think 'you look ok, so you must be ok', only that is not the case. A term I've often heard used in association with AVMs is "Massive Brain Trauma"--and that sums it up pretty well.

I've heard people say they are getting a t-shirt that says something like "AVM is the reason I'm the way I am" or some such writing.

Hope this helps.

Ron, KS

Heather Bernett said:

If my husband sees me gettig upset, he tells me. You need to be stronger, stop crying it isn't doing anyone any good. WHAT?? I feel the way that I feel and if crying at the time is the only way I have to escape at that moment, I am going to cry... maybe not even stop. Why not nothing else stops?? It just keeps going. Sorry, had to get that out! I feel really bad righ now, Like I am not a good mother, wife, sister. I know I shouldn't~ I am just so confused! THey let me out of the hospital and I still don't have any answers and I am in so much pain!! What do I do? Oh yeah, sorry for my spelling. I am really trying to catch that!

Hi Morgan,

It's very difficult to explain an AVM and/or side effects to someone that doesn't know (or care). An easier approach might be to say something like "I'm so addicted to roller coasters that if I ride once, I can't stop, so I have to pass" or "I'm guaranteed to blow lunch if I ride right now."

Or you could do what a co-worker did one morning when he came to work on crutches(he really fell off a pickup truck bed and messed up his knees) and everyone said STEVE, WHAT HAPPENED TO YOU?

He paused, looked them straight in the eyes, and said "It was a sexual accident and he'd rather not discuss it." It shut people up instantly!

Best wishes,

Ron, KS



Morgan Schunn said:

I agree that it is hard that AVM victims "look" normal. I have many side effects from my gamma knife and when I say I can't do something (such as ride a rollercoaster) people just tease you and you feel left out. I almost feel like when I meet people I have to explain all my side effects and why I can't do things, otherwise people think I am a boring person.

This is an awesome post Ron. What wonderful insight you've shown. I think it's important to note that this can be used for any kind of relationship we AVM-ers have with anyone close to us who we feel "doesn't get it". I'm often looked at as being unwilling to learn or do things a certain way when in fact its almost as if my brain got stuck (that's the closest I could get to an explanation). Again thanks for posting this and I hope that many people like me have found it useful.

God bless you!!!

Jessica

Excellent tool, Ron. My adult daughter is fortunate to have good support from her husband and others. But I know it can be difficult for many.

What my daughter (and the rest of us) struggle with is that we are trying to "keep the circle small" of people in our lives who know what's going on. It drains her/us to have to talk about it and end up reassuring others that she/we will be fine. Even updating about specific medical information or events is draining.

One of the things we did a short while after things calmed down initiatly was to write a one page account of the AVM event, how she was treated, what the prognosis was, etc. We mailed / emailed that to many of our friends and I think it took some of the pressure off us to "go through it yet again" verbally.

The other thing we found was that no matter how well we explained the AVM, to many it came across as a TUMOR or CANCER, which required us to clarify more.

Hope this helps.

ron, KS


D W said:

What my daughter (and the rest of us) struggle with is that we are trying to "keep the circle small" of people in our lives who know what's going on. It drains her/us to have to talk about it and end up reassuring others that she/we will be fine. Even updating about specific medical information or events is draining.

Ron, this is such a useful tool that everyone can use and after reading it i wanted to just give you a great big hug because i feel like finally someone feels the same way i feel. You have shed light on how to make people understand your emotions without trying to make it all about the AVM or all about another issue that that person is dealing with. Your tool will be essential in my everyday life from now on. Thank you very much Ron.

your question.."Someone close to you not understand what you are going through?"

This is sorta in that same area. What drives me crazy is when people hear of my AVM bleed and resulting memory problem, they always seem to say "memory problem? I have that problem too.". After trying to explain the whole ordeal to people, now I just say one of two things.. 1) really? I went to The Phi Beta Phi Rehab Institute at Vanderbilt for help with my memory. Where did you go?" or 2) "I didn't have a *perfect* memory and now I'm like you, I was like you before the bleed." kinda smart ass responses but what can I say.

Great info., Ron. I think that this reminder will help for all.

I'm happy that you decided to share this information, and I hope that you'll keep doing so...I'm trying to follow the formula without sounding like a robot...unfortunately, this comes from someone who has her Master's in Communications.

Hi DW - You might check to see if her hospital has a “Care Pages” or direct friends to this website and use Ron’s outline of the diagnosis, etc. that he disbursed. Before I found this site, DMC’s Care Pages was an invaluable communication tool plus I think that it was a good stress-reliever to blog about my happenings and updates. I even gave a 2-page testimonial in a local newspaper a couple of years ago! I would recommend that you direct them here…most people don’t have a clue what an AVM is, and this site does an awesome job of explaining it plus people involved don’t have to feel isolated.

Heather,

I can sympathize with your situation. Although, I am not married, I had family members and past boyfriends tell me the same exact thing. I even told myself the same thing. I am so sorry you're not getting the support you need. I know that the physical pain becomes too much to bear sometimes. It's okay to be confused.

As for crying and being upset, letting out you emotions helps. As miserable as it makes you feel in the moment, in the long run it helps. If you act "strong" by bottling up all of your worry and fear and emotional pain, it will hit all at once when you least expect it and it becomes so much worse. I bottled everything up and I blew up at a lot of people that cared about me the most. I didn't take care of myself and my AVM took a nasty toll on my family.

Being upset about your AVM does not mean you are a horrible wife, mother, or sister. Completely disregarding yourself and how you feel would mean something like that. You need to focus on yourself. The AVM process is a journey. A journey with many bumps in the road and mountains to climb.

However, my advice (and this goes for anyone out there that feels this way) is to get educated. There is power in knowledge. We're fortunate to live in a time of wonderful access to information. I researched specifics about AVM and learned my options. I then shared my information with my family. Share your information with the one closest to you. Show them experiences that others have had.

Open the lines of communication (like Ron explained) and explain that your life that has been drastically altered. Like Ron mentioned, AVM tramatizes the brain. The brain affects everything in the body and although your loved ones cannot always fully understand, tell them to but themselves in your shoes. Explain everything. Hopefully in time they can somehow understand that you're strong by letting others help you and not weak and setting yourself up for self destruction.

Also Ron, thank you for posting this! I wish I could have had a resource like this when I was first diagnosed.


Heather Bernett said:

If my husband sees me gettig upset, he tells me. You need to be stronger, stop crying it isn't doing anyone any good. WHAT?? I feel the way that I feel and if crying at the time is the only way I have to escape at that moment, I am going to cry... maybe not even stop. Why not nothing else stops?? It just keeps going. Sorry, had to get that out! I feel really bad righ now, Like I am not a good mother, wife, sister. I know I shouldn't~ I am just so confused! THey let me out of the hospital and I still don't have any answers and I am in so much pain!! What do I do? Oh yeah, sorry for my spelling. I am really trying to catch that!