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AVM Survivors Network

Ramblings Part 1 of?

#1

Hi all,
It’s not because there has been a lot of big physical things changing in the last week (some very minor improvements), but emotionally it’s been a tough one.

I was trying to think of something to say - because writing and chocolate are my two favorite things when I’m not doing real well. Couldn’t come up with one thing - so I decided I’m going to brain dump all over your computer or phone or iPad or whatever you might use. My hope is that sometime, someone, somewhere might connect with what I wrote and be blessed by it. So here goes…

  • The whole concept of “It’s not going to get better” - at least not in the next 5 to 10 years - is foreign to so many people. That’s another source of isolation and frustration for the patients (aka me). My mom (and I love her dearly) is almost 82 and doesn’t do life gracefully right now. Every day, she asks me how my headaches are. Every day she reminds me of the things that I’m already fighting. I have asked her to switch the focus - not, “how are your headaches today?” (Cue next card) - how is the throat? Instead, focus on the whole person. “How are you.” My primary care doc told me in the first appt I had after January 30, 2018 - The AVM doesn’t have you, you have it. You are in chargeRepeat again and again. If you are a patient, look for that and confront the situations. "Jim, I’ve got to tell you something, got a minute?..When you ask specifically how my headaches are - you interrupted a moment in time where I might not be fighting the headache - and suddenly, it’s back in the center. Ask more generic (but still real and concerned) questions - "Hey TJ, How are you doing? You got a minute, I’d love to learn more about it - because it sounds really unique “thing.”
    Ask how they are doing, ask if they need help with things - but let them control the amount of information and the way and time that it comes out.

Wow this really rambled - I’m going to start another one shortly…

TJ

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#2

At the two-year mark when my neurologist told me for the most part my brain is as good as it’s going to get, there might be some healing down the road but nothing of significance so at that point in time I told my close family and friends that if you ask me how I’m doing I’m not comparing it to the old me I’m comparing it to that point in time; don’t ask me about my AVM don’t ask about my health unless it’s something new. I might need help with my deficits but I’m no longer discussing the AVM as that’s a part of me that can’t change and I no longer wish it to be the center of conversation with my friends and family so I politely asked them to just stop. I know their intentions are good and they actually care but I didn’t need to be reminded everyday of what I lost and have no control over.

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#3

stands and applauds

#4

I know we all have a different path through this AVM thing but you’re not alone; always feel free to rant, we’re listening!

#5

Oh I know exactly what you mean!

But I switched my whole focus after I did my radiation therapy. I literally had enough and did a 360 turn of my life. And it’s worked for me. No seizures, dropped the medicin even (which the doctors pur me on for life) so I’ll tell ya! Focus on what you love here in life!

Cause I believe that when we realise that we’re actually not immortal (as I thought before the news that I had an avm in the brain) we get an urge to FULLY live life. So put you’re attention to stuff you like doing.

For example let’s say that you love to paint. So you start to paint, show your mom and tell her “look it’s soon done and I’m so happy with it. What feeling do you get when you see this?” Next time you’ll talk she might ask instead of how’s your headache, how’s the paintings going?

And switch out the paintings to whatever you enjoy doing but I hope you get my picture (he he) :yum::woman_artist:t4:

Sending you love and strength!

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#6

TJ:

I want to say something, but don’t know what to say. So, I’ll just say: I get it. We get it. And, I love chocolate too!

Sharon D…

#7

Ohh, I’ve been there too TJ, those repeated questions. It gets real old real quick, especially when things aren’t changing for us. Often I just came out with the line ‘Don’t even ask…’ eventually people got the msg. Those who know me can tell from the tone of my voice if my day is not good, they don’t even need to ask. When others, who must be blind if they can’t see, ask I often bark back ‘It’s all shit, it’s just the depth that varies’ they get the msg pretty quick. Change the subject. In basic terms ‘Don’t ask’.

Merl from the Moderator Support Team

#8

The reality is that people don’t want to believe that such a thing can happen. That you can be totally fine one, wake up to a massive headache—- So the nightmare begins. Surgery and permanent deficits. Ones they cannot see.
Everyone wants to believe that their life cannot change in an instant. They want you to be all better. What they don’t realize is you want it even more, but must somehow come to terms with this “new you”.
When people ask I try to start with the crappy and end with something ok. So the how are you question would get a response of “I’m still dizzy, unbalanced and sick to my stomach, but still improving “. It seems when you end on a somewhat positive note they are ok with it. I’m starting to transition that ending to “I’m learning to live with it”. Hoping that people stop asking. I’m also pretty tired of being reminded and of the unhelpful comments.
Changing the subject is actually very easy. I just ask about them. People are pretty self involved.
Wow, I guess you hit a nerve there :sunglasses:

#9

We have a catch phrase in our family - it means, “shut up, stop talking about it, you’re getting way to nosy or I don’t want to talk about it in front of my kids or…”

“Lovely weather outside.”

Three words and all of the family knows, drop that conversation.

TJ

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#10

Sheesh. This thread is timely. I just yelled at a friend because she told me “everything is going to get better”. What the hell makes these people think they know what my outcome is going to be. They have no idea how hard this is. Here I am trying to live with this and find a way forward and people have to spit out these stupid platitudes.
Plus now I feel awful. She just meant well

#11

I have a theory. I call it the ignorant idiot theory. I believe that most people fall into one of those two categories. Either they are ignorant - and let’s face it - we all can’t be experts in everything - or they are idiots.

If you’re ignorant, then I know you meant well, so I will attempt to bite my tongue and hopefully I can help you be less ignorant and help you see what’s really happening.

If you are an idiot, then you have no idea the kind of harm your plattitudes and warm fuzzies and unicorns are doing. And I don’t have time for those type of people. I believe there are way more ignorant people than there are idiots. i believe that somewhere deep inside most people is the inherent desire to do good, to be appreciated, to be part of something bigger than themselves. i also believe that there are way more people in the world who are ignorant than there are who are idiots. The writing I do on my personal site - much of it is written with the “ignorants” in mind (that was not a typo). Many of the issues of today - racism, abuse, corruption, child trafficking, immigration, education, jail overcrowding - they are all way bigger than most of us can wrap our arms around.

Don’t waste your time on the idiots. There are way more important things to do.

throws mic over shoulder and walks to the concession stand

TJ

#12

That’s fantastic. You had me laughing and crying at the same time.

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#13

I think I should make this a separate topic - but doesn’t it just frost you when people don’t know what they don’t know and so they act like they know and prove that they don’t?

And isn’t it amazing how that last paragraph, taken totally out of context could make me look like one of those don’t know I don’t know people (which in many ways I actually am).

Hmmm… prepare for Rambling Part # 3 hopefully tomorrow. How can we change the balance of the known, unknown and clueless without getting thrown off balance ourselves?

#14

Excellent question

#15

Hey Tom,
I wanted to add to your ignorant idiot theory and add arrogant in there too.
I had a female boss and no matter what you had done or where you had been, she’d always done it bigger and better. I had taken time off of work as I was unwell, very unwell as it turned out. I had an approved medical certificate from an approved practitioner which was provided to her. Rather than be accepting of the situation she called my home and proceeded to berate me because ‘…you wouldn’t know what unwell is…’. Her conduct was not professionally appropriate but her arrogance was simply beyond measure, luckily for me my wife was at home at the time and took the phone from me, informing the boss just how inappropriate her conduct was, because my next comment in the conversation was going to be damn direct and damn right insulting. I was the sole male worker in an environment of 20 other females, if one of the other employees had taken time off she would be very understanding, but for me to do so I was seen as weak. As it turned out by the end of the week I was in hospital requiring surgery but her arrogance was just beyond measure and no apology was even given for her conduct.
Ignorance, well, they obviously don’t know. I can accept that.
Idiot, well, they need an education on the realities.
BUT,
Arrogance, ohh they need an education with pain. Pain can be a great learning tool.

Some people think they know it all and are not accepting of anybody else’s views nor realities. No amount of logical conversation, polite discussion nor formal education will ever get the message across. Hence, an education with pain.

Merl from the Moderator Support Team