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Some thoughts on reinventing myself


#1

Hey all, It’s a been a little bit since I’ve written on here - time for an update…

First, a 40 years update in 2 sentences. Diagnosed originally in 1978, treatment in 1978, 1986, 2009 and now 2018. Started in left neck and spread and migrated up towards my head.

Now - Embolization treatment to reduce the risk of brain bleeds on January 30, 2018. Woke up with no hearing in left ear, extreme sensitivity to noise, enough balance issues to be a nuisance but not enough to keep me from driving - for shorter periods - too long and the road noise does a number on me - or from walking and a paralyzed left vocal cord. Have not been back to work yet and really don’t know what work I could do with these symptoms.

My last post was celebrating the fact that I slept in bed - a flat bed - but that only lasted two nights. Both times, I woke up with significantly worse headaches that kept me up for a while (as opposed to my usual 10 minutes) and significantly more tired the next day. My wife and I and my therapist decided to put that on hold and get more rest in order to deal with it all better.

As I’m waiting for the Social Security Department to process and hopefully approve disability, I’m spending a lot of time working on the emotional and mental process of reinventing myself. I’m working on adjusting to the hearing loss and the isolation that comes from that. I’m working with my counselor on how to make sure that the angry and the sad don’t rule my life. Allowing for them but don’t let them rule you - that was his advice.

I am working on a writing plan - because I feel very “normal” when I can communicate that way - and I have probably 75 articles planned out that I want to write - so hopefully disability gets approved and I can do that.

Last week, my therapist asked me to try an exercise - take 30 minutes and write down everything that you want to do. Not from a bucket list standpoint but from the standpoint of, “I can’t work, so what can I do to keep myself from going nuts and feeling like I’m doing some good.” I did that - and was amazed at the things that I could think of - I don’t think I’ll ever make any substantial money refinishing old furniture - but it might be enjoyable - just one of the things. It really opened my eyes to things that I hadn’t thought of before.

This week, we’re going to start figuring out the “steps” to do these and the realities of making them happen. That will probably narrow the list down a good bit - but will also provide clarity and purpose - which are crucial for decent mental health and feeling okay about yourself. I was going to make a joke about keeping me from drinking too much - but I had one beer with my brothers after my dad died - and hardly slept that night - my head hurt too badly - so I’m not worried too much about me wanted to drink too much.

The other thing I wanted to share - my physical symptoms - ears and voice - aren’t getting better on their own any more - kind of plateaued - but I’m being persistent in letting my doctors - both the neuro and the ENT - know what’s going on and we are attempting to work through assistive technology to try to help. Right now I’m wearing “filtered earplugs” that reduce sound levels by 25 decibels. Makes it possible for me to go to church, to go to my daughter’s graduation and things like that - even if I can’t whisper with the person next to me while it is going on. Whatever side effects/issues you have, keep pushing. My experience, so far, has been that what the ENT doc wanted us to try the first time - is plan A and there are at least two other options beyond that as well. Does that make sense?

Two other thoughts - I have a 16 year old and a 17 year old at home - and I’m dreading the school year being done - because then I have more noise around the house. Otherwise, I had the time when my wife was at work where it was just me and the dogs. Hopefully they will both have summer jobs.

While I definitely didn’t have a James Earl Jones smooth voice, with it sounding crackly and raspy, my kids (both adopted, both with trauma issues) have a hard time determining when I’m just trying to project loud enough to be heard and when I’m actually upset. Makes it a challenge too.

Okay, one more thought/question. My therapist said that it is important, since I look overall healthy, to be open about the issues that I’m dealing with - because you can’t see them. So, I’m going to be doing a fairly decent amount of writing on my blog about my story and the AVM is a large part of that story. I would love to do a series on there featuring you guys - I’d probably title it something like, “The Top 5 Things You Need to Know about AVMs - from people who have them.” So, if you have anything you’d like to add to that, I’d love to have you either share it in the comments or message me. I’m thinking I would reference and link to the group but not mention any names individually.

Make sense?

Stay strong and keep in touch,

Tom


#2

Hello @Tom_Vanderwell Thanks for your post- Where is your blog going to be? I had a massive rare stroke at the age of 43 due to 5 blood clots then later for bonus points I got an AVM, - I had a great career before all this and now can not work and new stuff just seems to keep coming up-

What seemed to help me was early on accepting my new broken self and striving to get back to old self.

I dont work and I am on SSDI- I am a volunteer Commissioner for my local Aging Commissioner even though I am in my 40’s - this is an appointed position by Supervisiors in our county. I also formed a nonprofit with some friends and we are trying to find space to open a no kill cat shelter - I also help other nonprofit get their act together.

Can you drive? Just so you can have quite time? I need quite time as well. You & your family might want to learn some sign language there are great free apps - might be worth- I know my voice is constantly screwed up from another genetic issue I have and my husband has a hard time hearing me plus we both worked in trading -

I look fine too even though I fall alot, my head hurts 24/7, aphasia, cant take opiates, have insomnia and have trouble using my arms- I have a handicap placard and have gotten into once with someone. Be prepared for people to be judgemental- There are so many invisible aliments out there - So many that impact sleep which is so important and people dont get it.


#3

Angela, Thanks for your response. You’ve got quite the story too - wow…

My blog is at http://tomvanderwell.net. I have been writing on there already and am going to be ramping it up to see what that brings. Writing is one of the few things I can do pretty much like I could before (though I do need to proof read a little more carefully.)

Have you been talking to my counselor - that’s one of the things he said - grieve what a you lost, be open to what the new you might look like and go forward saying, “I’m still going to have an impact.”

I’ve been waiting on SSDI for 2 months - even though I’ve been off work for 4 - it took 8 weeks before we could figure out whether this was going to be a long term thing or not. I will be more comfortable with being busy with “other things” when the income issue is resolved. Right now, we’re kind of like the government - staying afloat but spending more than we make - not by choice…

I can drive - I wouldn’t trust myself on a longer trip without another adult with me who could take over driving - because sometimes it hits me with a kind of nasty headache. I don’t have the dizziness as much as I do, well I call it “cruise ship wobbliness” - you know that feeling when the ship is moving with the waves? I have only fallen once - and that was on the second to the bottom step - my left heel didn’t hit the step and slid off - probably related but I can’t say for sure.

Quiet time - I have two teenagers at home - my quiet time is on the days where they are in school and my wife is at work. I can settle in to my “writing chair” and the dogs all find their sleepy spot in the den. That’s my quiet time.

And I can’t remember the rest of what I was going to say - so I’m going to post this, go back and read what you wrote and then I’ll respond more. Oh, I remember one thing - my iPads (plural) have become my best friends - the smaller screen and the less visual stimulation makes them much more user friendly than a laptop with a 17 inch screen and many tabs etc…

More in a bit…


#4

I remember what else I was going to say - awareness - that’s one of the things that my counselor has advised me to be a big proponent of awareness - of AVMs, of people who are dealing with chronic illnesses in addition to the causes I’ve already been big on - racism (my two youngest kids are black - adopted from Haiti), mental health, immigration, adoption and more.

One of the things I’m kind of geeked about (yes, I get that word from my daughter, the math and Dr. Who geek) is a ghost writing volunteer blog I want to set up. Our church had a 44,000 sq. ft former school donated to us and we’re working on turning it into a church (main floor) and subsidizing housing and other multicultural opportunities in the rest of it. A big big job - probably a $10 million renovation before it’s all done. I’m going to put together a proposal to our church that I want to set up a “building blog.” It will be written from the standpoint of the building and talk about the history and the people and really hope to personalize it and make it something people are excited about. This building has been around for so long that my Mom taught there from 1960 to 1962! It will point back to people at the church if someone wants to help or know more - but unless someone knows how to look up the domain owner name, no one would know it’s written by me. Total different type of writing and a really interesting chance to personalize a history and hopefully move it forward.

Okay, enough for now. Keep in touch and let’s keep this moving forward…

Tom


#5

Tom,

I like the idea of a top 5 things you need to know about AVMs. I keep starting a post to set one or two of mine out and then delete it. It’s so difficult to talk in general terms that would work for many people because experience of these things varies so much.

So… Based only on my own experience (and I know this varies for other people) I’d say my no 1 is…

Just because you’ve got an increased risk of a stroke doesn’t mean you should give up. It doesn’t mean it’s going to happen. Not today, anyway.

(I know this doesn’t work for everyone. In some cases – maybe half – it is more urgent / important, but the docs will act promptly if that’s the case)

My no 2 is… If you have any sudden or severe symptoms, go to the emergency room straight away. There’s no advantage in toughing any of it out.

I’ve got lots but I’m unsure of the value of them. I’m keen to see others’ ideas / rules of survivorship.

I took a wander round www.tomvanderwell.net the other day. You’re quite the inspirational thinker. I like it and I like your prose style.

It’s great.

Even the layout is great.

You know what I mean? You set your thoughts out very thoughtfully on the page. I particularly like

Don’t be ashamed of your story
It might just inspire someone

A perfectly good reminder for those of us here.

Very best wishes,

Richard