Disclosure: I NEED ADVICE

Specific Illnesses & Conditions VM/MAV
1

I need advice on what to say and how to say it if I volunteer to help with the aftermath of Sandy.

I just learned that New York and New Jersey jurisdictions are looking for building inspectors to help out over the next month as they restore buildings’ habitability.

I have long been qualified as an electrical inspector, although I’m very inexperienced as a third-party inspector for jurisdictional authorities.

I’m also known in the U.S. electrical industry because of my writing, largely writing about my work as an electrician and consultant. This means that if I respond to the call, there’s a good chance I will be accepted as a volunteer. (Paid, unpaid, I don’t know or care.)

What I need to think through is what to tell the people I contact, if I do so, about my vulnerabilities/reliability.

I could fuzz out, I could get dizzy or nauseous, I could space out fully for a little while. And, as I’ve learned from others, I might not even realize the latter is happening, or that this happened.
First, I have MAV. Second, I also have some kind of spacing out that looks a little more like some mild and wimpy epileptoid seizure activity and a little less like “standard” vestibular migraine. I’ve know this for years, so have my docs, we’ve never been able to sort it out better than that. Between drugs, diet, exercise and sleep, it’s all reasonably well controlled–but that’s within my regular routine. I know stress makes it worse.

None of this has ever happened, to my knowledge, on the job doing electrical work, on the job performing electrical consultation, at meetings, giving talks, any of that.

On the other hand, I’ll be going into an unfamiliar context, different hours than I’m used to, staying I have no idea where, and quite possibly having challenges sticking to any sort of MAV diet.

In short, if I offer my services, I have no way of knowing whether I’ll be able to think clearly or function effectively as a representative of whatever government agency I’m trying to support.

It doesn’t seem fair not to say anything, but it also seems ridiculous to go through a whole song and dance as I volunteer.

What are your thoughts and suggestions?

2

First and foremost KUDOS for thinking about helping and even being well enough for it to be on your radar. I’ve recently had to mention my MAV at my very part-time work for fear that a colleague noticed my symptoms and thought I was on drugs. I just said I was diagnosed with a neurological disorder that compromises my balance, but I’m working on getting the right combination of medications and that I’ll be okay. I got a very understanding non-condesending reply. Here’s why I mention the specific wording. I don’t use “migraine” because I don’t have headaches that come and go and I don’t use “vertigo” because the room doesn’t spin. These are classic definitions that people pigeon hole me into that do not describe me at all.
So yes, say something, people who volunteer are human and aren’t perfect. I find MAV is hard to explain because people have preconceived notions, so I have no problems using other words…use them. Since I don’t know your current symptoms it’s hard for me to suggest what you should say, but I would be happy to if that’s what you’re looking for…just let me know!!
Again…way-to-go for being in a place to put your skill set to use.
Judy

3

Hi David, I’d definitely say something, exactly what though is hard to decide. I always feel I’m being less than honest if I keep stum but I agree it’s a difficult one to get right. How much do I say? How do I say it? Tough.

In your shoes, I’d probably start by saying something like “Look, nothing has ever happened while I’ve been working, probably never will, (positive before the negative!) but just wanted to be up front with you (they can’t be anything but pleased at that!). Although my symptoms are well controlled now, I do have a condition called MAV which can show up in various ways…”

It would be up to you how much more you said, how much more they might want to know. I think you can say too much sometimes. For myself, I’ve always mentioned my lack of reliability, if only to take the pressure off myself ‘just in case’. Then at least if something happens,it’s covered and I don’t feel so bad about letting them down because I’d been honest in the first place.

But I generally try to say as little as possible but make sure I cover as much as I can in a a few short but essentially informative sentences - if that make sense.

Kudos to you for wanting to help out. Good luck!

Brenda

4

Thank you, Judy, Brenda, for your compliments but mainly for your advice.

Judy, I think you’re right, that “neurological condition” is the way to go.

Brenda, saying “MAV” doesn’t make as much sense to me in part because people tend to have an idee fixe about what migraines are/look like, and partly because what’s going on with me probably is “migraine-plus,” and I don’t mean “son of migraine.”

For now, I’ve decided to wait on taking any action till I get a post some time this afternoon from the local inspection department with more info as to what’s needed in the damaged areas. I did confirm yesterday afternoon that the need for additional “building inspectors” definitely includes electrical inspectors.

“Neurological condition” sounds kind of scary to me, but “neurological condition that’s under reasonable control thanks to diet and medication” seems more likely to be tolerated. What do you think?

I suspect that a natural follow-up question would be, “What’ do you men by ‘reasonable control’” or “what might happen”?

The other thing I’m trying to sort out is when it would be appropriate to bring this up.

5

— Begin quote from “david shapiro”

“Neurological condition” sounds kind of scary to me, but “neurological condition that’s under reasonable control thanks to diet and medication” seems more likely to be tolerated. What do you think?

— End quote

I think that sounds perfect, it hits just the right tone, honest, not too detailed or scary but easily allows for questions if necessary.

Regarding questions, you’ll have to be well prepared for those, so it doesn’t get too sticky! Again, less is more I think, as long as the essentials are covered. Is safety an issue David? Not quite sure what the work would entail but if it is an issue I think that’s all the more reason to be totally honest for everyone’s sakes, not least your own.

As for when you bring it up - maybe you should sound them out at the start, maybe in an initial email or phone call saying you are interested. But make sure you give them all the positive stuff about yourself first. See how they feel about taking you on and then bring it up. That seems sensible to me. No good wasting your time and theirs proceeding any further if your ‘neurological condition’ is a stumbling block at the off.

Once again, good luck!

Brenda

6

Hi David

I read your post and my immediate first impressions of hearing ‘a neurological condition’ alone does sound quite scary and a bit vague as if you have something to hide. Could you say ‘a neurological condition called Migraine Vertigo’? That way you are telling them what you have but also telling them it is neurological so they know that without asking more details about what Migraine Vertigo is. I only say it because if someone said to me they have a neurological condition and that was all they said about it full stop and I didn’t know them or their history, I might start thinking they had something terminal like a brain tumour or I might think they had some kind of mental health issue. If they were too vague it might put me off employing them as I would think they had something to hide but, like Brenda said, there’s no point going into too much detail unless they ask for it. I just think giving them the name of what you have accompanied by a very brief explanation is the best way forward. Hope it helps to have another person’s perspective…