AVM Survivors Network

To See or not to See

Introduction - before I hit “send” on a comment, I decided it was too lengthy to do as a comment so I made it into its own post. If our moderators can do it, I would love to have a link to the post, “Just an Update” - and read the comments too - a lot of wisdom.

My comment was originally in response to part of that thread that dealt with the complexities of having a chronic illness that is rarely visible. If we walked past each other in a shopping mall, the only way you would know I had something “wrong” is the bump above my collarbone.

Here goes…

On the invisibility cloak that we’ve pretty much all been “given” (that sounds like too positive of a word.) I try, and rarely succeed, at looking at it this way:

  • The vast majority of the people I meet wont know me well enough to really be valuable friends in something like this. If they dont know me well enough, then they dont need to know the details.

  • I’m spared the pity eyes as I call them. You know what I mean, “oh you poor thing, I feel so bad for you…” I dont get those from a lot of people because, walking into the auto parts place, other than a big bump near my collar bone and my left shoulder sags about 3 inches, I look normal. That’s a control that I have when they cant see it.

  • you also get to control how much of the story, your story, you share and with whom you share it. I dont need to share with my nephews that there have been times in the last two years where I questioned, “How in the heck am I going to live another 30 years with this blasted noise in my head?” And then remembering when a counselor came to my kids school when one of the students killed herself and she said something that will stick with me forever, “suicide victims dont want to die, they just want the pain to stop.” I know what they mean now.

The only place I feel I can share that are my wife, “my Randy,” my pastor, my primary care doctor and you all. And since its not visible, I can control that.

My mom is 82 and my Dad died a year and a half ago. She has aged close to 10 years in the last two years. She keeps trying to fix me, she sat next to me in church and said she thought my voice sounded very good singing. That’s her way of trying to make it al better. I told her it was for the first two songs, then I couldn’t sing more than 4 notes and I’d be out of breath and those four notes would quite out of tune. “Oh, I didnt notice that.”

If she wasn’t family, she probably wouldn’t have noticed and those conversations wouldn’t have happened.

Being invisible is a blessing sometimes, but it does limit the amount of support you get because there are people who would pray, help do something that dont because they dont know.

I was originally going to do this as a comment on the “just an update” post (can one of our dear moderators put the link in?) and decided to make it a separate post because I rambled a bit extensively.

More later,


1 Like

Here’s your link TJ


It absolutely is, TJ. It absolutely is. I’m a lot better than you. I’m basically well, so I don’t have any of the stuff that you fight with but I know my mum would be exactly the same.

I think the trouble there is that she just wants you fixed because she loves you so much but she just has no idea how that could ever happen (and she probably doesn’t get half of what’s “wrong” anyway but it’s probably as well that she stays innocent of it. I’m sure it is innocence).


If I could tell you one thing I think it would be that even with a jet engine roaring in your ears every day, I’d encourage you to find even the smallest thing you did or the smallest thing one of your family did that you enjoyed today that you wouldn’t have seen or you wouldn’t have done (or probably would have not noticed or would have taken for granted) if you were still busy Xty hours a week selling insurance.

I know that when I was feeling poorly with my AVM and not allowed to drive, I noticed the spring shoots coming up, the tiny buds of a dark red bush standing out against the frost and lots of other beautiful signs of life that I would otherwise have whizzed by in the car and not paid even a thought to, had I not been forced to walk to the bus stop.

I even praised the cold and the frost when it came to spring time proper, as the fresh air seemed more pleasant than the pouring rain!

If you’ve not gone out to buy that book yet, I’ll post a copy to you, if I may.

We’re not quite at the New Year but very best wishes for 2020 from me!


Hello TJ,

I agree with you, especially with the “poor thing” part. Now, I’m very fortunate with not so many symptoms of my AVM, but I like that no one has to know about it, especially when I meet new people. I usually never tell them about it anyway.

But what was annoying to me was when I first got to know about it and it spread through rumours to my (now) old friends, that I had some kind of “disease” and everyone just turned their back away, not even asking how I was.

There and then, I knew whom my true friends are. Those who actually stuck around and cared to ask how I was. I have a small circle, but it’s a damn good bunch of friends and family left. I realised that I don’t need anyone else and my connection with the small circle keeps getting deeper and stronger :slightly_smiling_face:

Some people just don’t deserve my time cause they don’t even care or knew how to handle it! That’s what I realised. And that’s why I don’t tell anyone about my AVM till we’re actually friends.

And, lastly, therefore it’s so nice to have this community to share and support like-minded (who’s in the same boat) :slightly_smiling_face:

Take care!

Quite right :heart:

Hey all,

First off, I apologize for not responding sooner. The last month hasn’t been bad but it’s been busy and much more high maintenance than normal. That leaves less time for the things that feed my soul. Things like taking with you all.

Richard - you have my mom figured out way better than my brothers and my wife do. They just think she’s getting old and grouchy. In reality, she’s getting old, she’s very lonely without Dad around, she’s spent the last 58 of the last 60 years being my Dad’s backstop, back up, support whatever way you want to describe it. So, not only did she lose her best friend, she lost well over half of her purpose in life. So, most of the time I can take it for what it is true caring and a desire to be needed and to help.

Richard - you said you’re much better than me. I’m going to change that statement to say your AVM isn’t as much of an issue but when it comes to skills, brains, good looks, golf skills or whatever, the jury is still out whether you are better than me. Hah!

Richard - good advice about the small things. It has been a long journey but I’m starting to get a better handle on being able to look for the small things and the small victories. It’s not easy but journaling has been an answer to a lot of prayers in processing it all.

Richard - I would love a copy of that book, Reading isn’t easy for me (kind of strange, I can write on my iPad much easier than I can read)

Mia - I can not tell you how accurate you are and accurate about it comparing our old church to our new one. Our old church fell into the category of “people who didn’t deserve to know, didn’t really care except it made them feel better about themselves.” Our “new church” (it has been around for about 110 years but we’ve only been there for 5 years. Our senior pastor used to describe our church by saying, “I’m just one blind squirrel trying to help other blind squirrels find nuts.”

Everyone has problems. We’re all in this together. We don’t need to know everything to know that everyone’s got a struggle that they are dealing with. It gives you the right to tell as much or as little of your story as you want and it still will lead to support, prayers and concerns.

I promise I will be here more often. I need it. You all are good for me. Thank you!



Hey, it’s good to hear from you.

I’m sorry I said “better”. Wrong word. I mean “well” especially when compared with what you have going on.

The book is on its way. It’s in pretty short chapters - a page or two each - so easy to read a bit and put down. To be honest, I think I’ve only happened upon the Terry Waite entry when idly browsing one day, so I don’t know any of the other stories in there. I hope they might offer a bit of human insight for each day, perhaps randomly chosen.

It’s on the way. Should get to you on Monday :wink:

Your mum is the same as mine. What we have to do is just be generous when interpreting people’s intent. I think it is rare that those we love don’t mean well. I think it usually means we have misunderstood what they meant, like me saying I’m better than you!

Lots of love,



You make me laugh. I was so totally throwing it at you when talking about the better stuff. Pure unadulterated fluff…

Short of family with mental illnesses or with significant trauma from things that happened to them in the past, I agree. There are rare cases but neither you or I are that rare…

Thank you very much sir!


I know but actually, it served as an example of me saying something that could have been taken the wrong way. I know you were teasing but in another context if you or I were having a bad day, you could have been grumped by my haphazard choice of word.

Have a f.a.b. weekend!


I’m busy enjoying On Golden Pond this evening. If there was ever a person about whom you have to be generous when it comes to interpreting their comments or actions, it would be Norman Thayer Jr.! I can still see the love, though.

“… That old S.O.B. happens to be my husband!” I’m hoping my wife understands me as well as Ethel. I think she does.

Hope you’re having a good weekend.

Best wishes,