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AVM Survivors Network

Awkward Questions (long post)

Hey all,

I’ve got a couple of questions that I’m wrestling with and I figure if I am, odds are, probably at least one other person is, so I’m going to be that person who asks the question.

My kids youth group leader said it beautifully, when she would go out for coffee with a teen or sense that they are feeling a bit awkward, she’ll take the initiative and throw the awkward question out there and say, “I’ll be awkward so you don’t have to.” Now obviously, being the youth group leader of 30 to 50 teenagers is a lot different than this, but I’m going to follow her footsteps. So, Christy, this one is for you……

Here’s the deal, there are people, including my wife and I and my brothers and such who are all wishing/thinking that I should be able to move forward from this better than I am. The other day my wife said, “You know, our daughter has a heart condition and it’s hard on her and it’s hard on us. There’s a lot of things that she can’t do because of her heart condition, and that sucks. But because of her heart condition she has made some amazing new friends - other kids like her.”

“I think you’d be a lot happier if you could find that “thing” and say, “I can’t do this and I can’t do that but……” And focus on that…….

I think that personally I am doing significantly better at not jumping to conclusions and not getting ticked off until I truly understand things. So, I responded and said, “I would love to find something that I could still do well, any ideas?” “Well, not really.”

So, in case you didn’t know that about me, but I think better when I write than I do if I just think or if I talk about it. I spent a couple of hours yesterday in sort of a self exam/written essay where I went through and looked at the things I used to do and the skills that those took and whether I would be able to do them now. “based on Mr. Vanderwell’s medical records and his testimony today, are there any positions out there that Mr. Vanderwell would be able to do full time without significant concessions and adjustments that would make the position effectively not useful?” “No, your Honor, there are not.” (Vocational Rehab person to Judge)

And there you have it. Uncle Sam (a.k.a. The government) has come out and said, “That Mr. Vanderwell, when it comes to work, he’s got nothing.”

The only thing that I can do that I’ve previously done occupationally has been writing. I did a LOT of that when I was working for the orphanage and it was very productive. I currently have a lot of ideas I want to write about but stuff keeps getting in the way:

  • One of the things that this embolization did in my head was made it unbelievably hard to stay focused. I’ve always had a “bit” of ADHD but this ramped it up by a factor of 10. So I have ideas but I can’t get them off the ground.
    -The unreliability of the headaches. I can’t tell whether something is going to cause just a minor issue or it’s going to knock me down for a large portion of the day. So I have a very hard time planning things and keeping things going.
    –The desire to try to meet impossible standards when it comes to being the stay at home dad - along with all of the distractions that come with being at home.

Finally!

The questions:
-What am I missing in this saga? Is there something I should be considering that I’m not?
-How do you “start” a hobby? Until now, my hobbies have been computing, reading and golfing. My head, eyes and my 1 ½ lungs make all of those a challenge. Not to mention I live in a place where you can really only golf May through September (yay, Michigan).
-My wife and I talked about other things - like redoing old furniture, fixing computers, parting out used cars, lawn mowers etc. My wife thinks that they would be very frustrating - which if they were on a specific time line, they would be. Putting an additional garage in the back yard would provide the space and we could put an office in there too - but that wouldn’t be free.

What else can a guy do to feel better about himself when there is really very little that he can do for any length of time without feeling like he got run over?

We don’t have extra space for a hobby inside the house right now and probably won’t until our 27 year old moves out (estimated time 6 months - less if her brother really annoys her) - she graduates in April with a Bacherlors in Cardiac Sonography. She has basically the family room in the basement so there would be room in there for some hobby things. Do you have any advice on setting up and starting a hobby in space ,…like that?

Are there any questions I should be asking that I’m not asking or things I should think about that I’m not?

And if you managed to read this far, thank you. In as much of an abbtrviated form as possible, this is where I am and what I’m wrestling with.

Any thoughts, ideas, etc, would be greatly appreciated.

*tosses mic to Merl and tries to figure out where Richard hid all of the chocolate……

TJ

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I’ve taken up painting. I used to love wheel thrown pottery, but as I tell people “that’s now tough to do with one and a half hands”. So I was looking for something artistic I could do. My expectations were low when I signed up for an acrylics painting class but I am really enjoying it. The painting are only mediocre, but I love the peace it brings me. Doesn’t tale up much room and was pretty inexpensive to get started. Luckily my right hand was not effected much by the avm.
Now golf is another story. I have balance and vestibular issues (feeling light headed and dizzy when ever I turn my head). I was an avid golfer and quite good; even played in many state events and two national tournaments. Although I don’t play as well and it frustrates the hell out of me, I just can’t give it up. I love being outside and walking the course (getting back to walking was a two year marathon of work on my part, but I did it!!). Now if I could just cut myself a break and learn to live with being a middling golfer. Sheesh

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Where to start???
“The unreliability of the headaches”. This makes management near on impossible. I feel OK, I make a plan, I start a task, then BANG, BANG, BANG… (headache). I can ‘try’ to push on through but the cost of doing so often/always outweighs any benefit.

“The desire to try to meet impossible standards”. We are often our own worst critics (well, I am). I have always aimed high but since this journey started I seem to always be falling short of my own expectations, which then leads to frustration/annoyance, then beat myself up for not meeting my own standards. My wife has told me ‘STOP IT’ but that just makes me feel lazy, which leads to more frustration. I seem to be going around and round in ever decreasing circles and my self esteem has run out of steam. I had to learn to accept and some days that acceptance thing is easy, other days it’s far from easy. And even years later I still haven’t got that ‘acceptance thing’ done. Let’s just say it’s a work in progress.

27yr old still at home??? BOOT :slightly_smiling_face: (JOKE)
Many years ago I ran a youth accommodation program. And IMHO For any parent to still have a 20+ child still at home, either you’re a saint or a masochist :smile:

DOH, Merl found and ate all the chocolate, so good luck in finding any :smirk:
‘You can have your mic back now’

Merl from the Moderator Support Team

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I feel ya TJ. For me, the vision issues have made reading (a pastime I used to love) a chore. I have a dog which is great but he’s not really much of a conversationalist. I can’t drive (see prior vision issues) so what can I do? I’ll let you know as soon as I figure it out.

I did manage to write a book chronicling the past 20 years of said brain injury, but other than that, I’m essentially homebound. And I can’t publish until I get the funds to publish so, yay, wait some more. Ah well, at least health is here for now. Rant over. And I’m out.

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picks up mic
looks around, all of the tables are empty except for some guy slouched in the back corner
is this thing on?

Let me tell you a little bit about my 27 year old. My oldest slept through the night within the first three weeks of her entrance to this world. She made the whole idea of being parents a pleasant reality. Our 27 year old, the youngest child until we adopted the youngest two when she was 12, was the exact opposite. She wasn’t sleeping through the night until she was close to 2 years old. Yeah, she often jokes (and we do too) that if she had been first born, she might have been an only child.

But as she grew up, her whole outlook changed and she has become a wonderful person to be around. Definitely an introvert but after 2 years of college she realized she didn’t want to do what she originally thought. So, took some time off from college, decided she wanted to get into cardiac sonography (partially because her youngest sister has a heart condition) and paid for and completed all of her schooling while being a pharmacy tech at the hospital. We give her a “hard time” because she finished high school only 7th in her class whereas her sister (the second oldest) came in as valedictorian. Yes, she is still around, but it’s all good.

TJ

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TJ,

Hi! Not sure where the chocolate went. Vanished when I wasn’t looking, I’d say.

I think the thoughts I can offer today are…

1 I suspect you do need a space that is yours, in which you can go and hide / be / hang out / take your own time in and do what you want, as if you were at work, perhaps, or certainly not on call to the washing, cooking, cleaning, young person taxiing or whatever.

I’m not sure that it matters whether you carve out a new interest or one you’ve had for a long time but are finding it difficult to do. I suspect you need the space and give yourself permission to spend time there and be productive at whatever you can do (aforesaid limitations noted).

2 Your ADHD note is interesting and feels like something we should think about as to how to help you with that. I can’t say I know anything about it really but I can see that, uncontrolled, you’d get very little done and that could be the bigger part of the frustration.

I watched a TV programme a few years ago about a UK naturalist called Chris Packham. Chris doesn’t have ADHD. Rather, he has Asperger’s but one of the effects his Asperger’s drives for him is almost a hyper reality and a cacophony of distractions. Constantly.

Chris’s strategy for dealing with the constant intrusion is to cut himself off. To live rather in the woods but also, when he needs to be able to concentrate, he keeps the decor in his rooms very simple and he closes the curtains to shut out some of the distraction when he needs to. There is a fascinating film about him currently here on YouTube – the film I watched some time ago. It may be worth a watch but it is simply his strategy for cutting out the distractions that I think you should think a little about – and get yourself a space you can do “work” in that is simple, not distracting, and a bit of a sanctuary.

3 If you can get to be a bit more settled in yourself, you’ll achieve more with your family. So, rather than seeing your time out for yourself as selfish, you should see it as something that helps you do better and because you do better, you will achieve more with your family. I’d hope it will help all of you.

Hoping something there might help,

Richard

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The last time that I played golf was in 2009 and even at that point, my AVM had already affected me to the point that anything beyond mediocre was totally out reach. When I was in high school, I played in a golf marathon and in the middle of it, I shot 2 over par for 18 holes. After I got back to it after my 2009 episode, bogey golf was the best I could get.

You know, you say that about art, I thought a while back, hey, maybe I should take the piano up again? I played quite a bit through 9th grade and haven’t much since then. Shortly after I thought that, my wife sat down to play and I love listening to her play, but it was so loud on my bad ears. So we’ll have to see.

Thanks for the thoughts, they mean more than you will ever know…

TJ

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Your hobbies were the same as mine! I don’t know if what I’m going to say will speak to you but this is how I roll. Travel has been a big hobby. I like the challenge of trying to get this disabled body through this world.
Finding hobbies is my hobby. Almost everything I try is unsuitable for my new normal. But the trying of things to see where it comes apart is fun.
Perhaps just moving the focus from finding to looking will bring happiness.

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I would also like to mention Scouting again. Trying to communicate to a youth and the satisfaction of watching them (really me lol) succeed. Very gratifying.

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Richard,

Thank you my friend.

Yes I’m realizing more and more that I need that time that is just mine and I need to not feel too focused with it and just see where it goes.

My wife and I were talking about something about the house we live in and we came to the conclusion we live in an odd house. It’s a 120 year old house surrounded by a couple of hundred 40 to 60 year old houses. It’s sitting on an acre of land (for those not used to acres - they are 43.560 squ. ft. or 208 ft by 208 ft.) and all of our neighbors (well 95% of them are living on lots that are 100ft wide by 140 ft deep). One of the advantages about that is that I don’t have to feel like I need to keep up with the Joneses (a metaphor for always having the nicest car, the biggest house, the cleanest yard etc.) At our previous house, our neighbor would go out in their yard and pull the dandelions one by one because she would not be happy with them in the yard. Yeah kind of strange if you ask me (and if you’re that way, I apologize).

Well if I can get my wife to be patient enough and me to be patient enough, I could see me moving from just mowing to doing the rest of the yard work too. 4 hours of slow motion yard work a day would be good for something, eh?

*so if Merl ate all the chocolate, you do’n’t suppose that he’ll buy more, do you?

Signing off,

TJ

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I know that headaches are an issue for you, that you enjoy writing and young people.
Maybe volunteering at the local high school. Where my kids went they had a writing center in the library where they could get help from local volunteers. Quite at least. Or I volunteered at the public library teaching esol.
I’m all about participating in what’s available. I was never a great swimmer, but now I love the pool. The bouncy helps with my balance. It’s the only place I’ve found where I feel like my old self. Never used to do water aerobics, but now I’m enjoying it. I guess you never know until you give it a whirl

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I think the library is a fine idea. I think some of the trouble is being well enough to be reliable. Our local library is calling out for volunteers; I’m quite keen to offer some time but I can bet that they’ll then want me there every week on the same day(s) or they’ll make me feel guilty that I’m not keeping the library open.

TJ,

I watched the CP Aspergers film yesterday, prompted by thinking about it. I do think if you’re struggling to focus, getting yourself a space with few distractions in it, quite plain decor but perhaps some things in there that provoke the mind might be useful. Chris is seriously autistic, so mad patterns on the wall in the children’s unit or the windows not lining up were big distractions for him. While you or I might not be on the spectrum, I’m sure clutter or lots of stimulation could distract us, too.

I’ve got some Kendal mint cake somewhere… we could start some of that. But don’t tell Merl!

Richard

NOPE :selfish:

Interesting you talk of Aspergers Richard. Many moons ago some people were labelled as idiot savant, their social skills were minimal but their knowledge or skills in one particular area were near perfect. The term ‘idiot savant’ is now seen as politically incorrect, but many of those same attributes are considered to be markers for Aspergers Syndrome, also sometimes called ‘High functioning autism’. Some high tech industries are specifically employing people with Aspergers due to their desire for perfection. What was once seen as an undesirable trait has now become highly regarded in some sectors. There still hope for us all :smile: I’ve got the ‘idiot’ trait worked out, that I’ve perfected, now I just have to work on the ‘savant’ bit :smile:

As for too much stimulation, I couldn’t agree more. I can handle some driving OK, but city driving now is all too much. Too much traffic, too many people, flashing lights, traffic lights, emergency vehicles etc etc, It’s all too much.

Hey, I heard that… …. where’s mine??? :smile: :smile: :smile: :smile:

Merl from the Moderator Support Team

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Well TJ I can say is bravo for Bogey Golf. One pays (around here anyway) a lot of money to play golf. Seems to me the more you get to play (bogey golf) the more bang for the buck…

It all changes anyway My middle daughter was a Div 1 Tennis player. She was in her final match at nationals and had played Deuce 9 times. Finally at a switch she signalled me to “coach her” So what do you say? All I could I think of was “Finish it up and go for it You’ll be playing in the old ladies league next” She won (on aces I might add) Played Pro for a year, Coached a College Team for a year, and was club Pro for a while at a country club. About a year after that I got a call from her telling me remember my last college match (of course I did Her Serena match in the pros was very forgettable- she hit the dirt on the first serve) “Well you were right” I just got spanked by a 50 year-old Doctors wife. The point is looking back isn’t always helpful. We are far more effective where we are NOW than we ever think. (BTW the Doctors wife had been taking private lessons from Jessie) We ALL have far more to offer than we think IF we give ourselves the chance.

TJ1 - Mod Support

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I do love me a good TJ post. As always you take the words right out of my mouth and the life I’m living as well. As many of you might already know I suffer horribly from daily headaches and migraines myself, debilitating ones and I have run into the same problem with trying to find something to occupy some of my time because my life can’t just be pain, doctor appointments and a part time job that I hate. A lot of my friends fell by the wayside after my massive stroke they don’t know how to deal with me so I had to come up with something on my own. I used to be very big into art, took 12 years of art classes, and I’ve dabbled in that the past few months which is very enjoyable for me. When I’m in my room I just have one lamp on, if I need my bright overhead lamp then I put a hat on to block some of the light, but I make it work. I also agree with the other poster about swimming, I’ve done that a few times and let me tell you TJ dipping your poor head under some cool water is a feeling that is so delicious lol… I also agree that finding a space of your own with limited distractions would be very helpful. I know you said you have trouble focusing when you’re writing but I think you should really pursue that. I think you are such a beautiful writer, and whatever title you decide for your book I will be the first one in line to buy it. It’s so relatable to myself and I’m sure so many others. Maybe your wife could help you with an outline and to stay focused and then go from there. My therapist is the one who told me to get back into painting because she said distraction is huge for pain management, and it’s true. When I’m painting in my room, I can start whenever I want and I can cut it short if I’m having a bad day. Doing a little bit every day or every other day is just fine because I do it at my own pace, it could be the same with your writing. I’m thinking about other things, what color should I paint this, what should I draw here, and it’s good instead of just sitting in my room constantly thinking about my pain. I think you have such a skill in writing and I would love if you would pursue that, In a space that is yours with the lights low and quiet atmosphere.

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“Distraction is huge for pain management.”

Stop and think about that.

That is so true. But that’s also hard to do. Especially when you are constantly reminded of the reason you aren’t out there doing whatever you used to do “out there.”

Thank you so much for your advice and your kind words. Both are very appreciative.

Oh and I have started my first book. I’m on chapter 3 and I don’t know how many chapters it will be. The preliminary title - “Wrestling with God on a Cold Winter Day - One Man’s 42 year struggle with a rare illness.” I’m not sure I really like the subtitle portion of it yet, so we’ll see.

Oh and I have the outline planned for my next one - “The StarFish Poem and 25 other ways that white adults make international and transracial adoptions harder.”

And there in lies part of my problem - I have a very long list of things I want to write about and it’s very hard to sit down and do them and I’m finding myself very frustrated with myself.

As I’m sure you can tell (at least I hope so) that God is a large part of my life and a large part of what’s keeping me moving. When my Dad died (2 years ago next month), I inherited over 500 of his sermons in writing. My goal is to take those sermons (spoken word of 20 to 40 minutes each) and turn each of them into a number of shorter (500 words max) devotionals that I can post some on my blog and eventually package and share them as devotional books.

I learned while surfing the National Institutes of Health’s website (yeah, I’m a geek about it) but there is apparently a link between TBI’s and chronic fatigue. That could explain why I am tired all of the time. What to do about that? I can’t really say I could find anyone who said “here’s the thing to do.”

And with that, we’re off! You guys have lifted the baseline mood a bit this morning and that in itself is a really good thing.

drops the mic, raises a glass of ice tea (it’s only breakfast) and smiles

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So what if it’s only breakfast? Ice tea?? now come on. If you’re gonna take the microphone, surely you’ll be needing something a bit stronger :cocktail: :cocktail: :wink: :wink: :wink: :rofl:

Absolutely, and having that constant reminder can drive us damn near crazy. So we try to ignore it, but at what cost? I ‘tried’ to keep myself occupied by keeping myself ‘distracted’ at work, pushing those boundaries, only to have my whole world implode. Sometimes it can be a fine line between Distraction and ignoring a reality.

“…there is apparently a link between TBI’s and chronic fatigue…” Without any doubt what so ever. And it all fluctuates with the TBI effecting the chronic fatigue and the chronic fatigue effecting the TBI. To the point where they seem to feed off each other. Some (uneducated people) think it’s all unrelated but we know better. I don’t believe there is a set “here’s the thing to do.” What works for one individual maybe of no benefit to another and that makes the whole ‘management’ thing just that much more difficult. We can’t have a set plan when symptoms can be so variable.

Merl from the Moderator Support Team

Here… …Have a shot of whiskey, neat. That’ll warm ya up and put hairs on ya chest too AND you’ll forget all about breakfast :rofl:

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TJ, you’re taking the words out of my mouth again about being constantly reminded of all the things I used to be able to do that I can’t do now. I see a therapist every other week who kind of scolded me the other day because I need to look at life as “mostly sunny” and not “mostly cloudy.” She however has no idea what it’s like to live in these shoes every day, and the struggle it is just to get through life. I would love to find another therapist who I can relate to more but I’ve already been to two others in this one takes my insurance so I feel kind of stuck, so I go anyway. She always brings up the same line that everyone else does, “things could be so much worse.” Like yeah, it could be but that doesn’t make me feel any better about my situation. I’m very glad you are writing, this makes me happy. I’m not sure if you’re allowed to post a link to your blog on here I would love to read it, or maybe private message the link to me? I admire you very much, and I’m comforted when I read your posts because it makes me feel that I’m not the only one out here living like this. So thank you TJ.

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TJ

I’m with @Jeannine. You’re pretty marvellous at what you do. I’m sure that all writers, musicians, artists, comedians and the like find it incredibly hard to sit down and turn out what they are satisfied with.

I’ve just randomly watched the following video, which contains some snippets of gorgeous piano music, and the equally marvellous Mr Andersson saying that his solution is to just keep at it. Plug, plug, plug.

It made me think of you.

Greetings from over the pond!

Richard

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Jeannine,

Hearing you say that makes me think of the Grinch in the Dr. Suess book - you know the place where it says that his heart grew three sizes that day. Lately I have been doing more writing on here and personal contacts than I have on my blog, but I’m working on changing that.

I’m working on a series for the blog that I’m calling, “Because…”. I had a conversation the other day with someone I know locally who asked me, "Why do you write? What pulls you into it? This series will be an inside look at what moves me, what do I have that I want to write about, what do I feel matters. And then we’ll branch out into a lot of other things as well. One of the projects I’m working on is an autobiography of my AVM. Well, it’s sort of about me, but only about those parts of the story - for now.

And on that note, I think it’s time to call it a night. Thanks for turning this day in a positive direction…

TJ

Oh and I don’t know if we are supposed to put links on here, so I’m just going to urge you to Google “Thoughts From an Ordinary Guy” let me know what you see.

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