Creative Advocacy

Some time back……I’ve learned that if I actually think about how far back it really was, it will unnecessarily depress me, so, like I was saying, some time back, I found myself with my team in Kandahar, Afghanistan trying to catch a flight back to Bagram. It was unscheduled and we kept getting told that everything going that evening was full and to check back later.

“Later” kept turning into even later and was on the verge of turning into never. This was probably because when the bored Airman at the desk told us that, “The Airforce is not a taxi service.”, a less than diplomatic teammate replied that that was exactly what it was. It was decided that he would no longer be sent into the terminal to inquire about flight availability and that I would perform the next “check back later”.

As luck would have it, I bumped into the Group veterinarian while waiting. He asked if I was going to Bagram, and when I said yes, he asked if I would carry a package there for him so it could be sent back to the states via courier. The package turned out to be a cooler, sealed and marked with a biohazard symbol, and contained tissue samples that were to be tested for anthrax. I was nothing if not helpul, so of course I was happy to carry a cooler full of what could be samples containing a potentially fatal disease. Months later, I would catch Q-fever while helping that same veterinarian vaccinate livestock as part of a civil affairs project and after that, I was way less inclined to be so helpful, but that’s another story.

No matter, it was soon my turn to go to the terminal desk and ask if there was any space available on a flight to Bagram. I absentmindedly set the cooler on the desk and after the Airman gave his automatic reply of “everything’s full”, he looked up, saw it in all of it’s sealed, stickered, glory and asked, “What’s that?”.

I was beyond tired at this point and forgot to add words like, “potential”, or “to be tested for” to my reply of, “anthrax samples”.

We got several rows to ourselves that had just, that moment, become available on a C-17. I even had an empty seat next to me to set the cooler on and sprawl into as I snoozed.

That story is an example of creative, albeit, accidental advocacy and I don’t recommend that particular method for either a real airport or a healthcare visit. In both cases, not only will you not get what you were after, but you will very possibly be tased and/or pepper sprayed, handcuffed, and arrested…..not necessarily in that order. The point is, sometimes you have to go the extra mile when advocating for yourself or someone who is unable to.

I am able to advocate for myself…..most of the time. My wife accompanies me to appointments whenever she can, to fill in things that I’ve forgotten*, or (maybe more importantly) to ask questions and add to the discussion from the perspective of a caregiver. I realize my situation may not be your situation, but there are things a caregiver, physical therapist, occupational therapist, etc, etc, could add to your next neurology visit. They may not be coming with you, but believe me, it’s worth asking them for their input.

I mentioned it in my last post, but if you haven’t already, take the time to learn about multiple sclerosis and whatever medication, treatment, therapy, device, and so on, that you’re asking about. It’s not about sounding smart, or using big words, although if you lead off with, “I saw on Facebook”, or “I googled______”, you should probably immediately follow it with something that shows you’ve looked a little deeper into it. It’s about sounding like you care enough about the answer to have put some effort into the question. If you don’t like the answer, be prepared to ask why that answer was given. If your provider can’t, or won’t explain the answer, it might be time to get a second opinion.

Yes, I’m aware there might not be options when it comes to providers. I get most of my care from the department of Veteran’s Affairs and like many taxpayer funded healthcare systems, you get what you get (my kids would add, “and you don’t pitch a fit”). I know I have been extremely fortunate in my neurology care, but I would like to think it’s at least partially due to my being a successful advocate for myself.

I don’t bully (I don’t even think I’m that assertive), I don’t manipulate, coerce, or even pitch a fit and I don’t suggest you do either. I do, however, suggest that you be your own advocate and that you advocate creatively if need be.

If MS is ever cured, it will be the result of someone asking the right question.

*There is some debate as to why I forget things. I say it’s because I have MS. My wife’s theory is that I’m getting ol……you know, it’s so far fetched and harmful to my pride, that I won’t mention it here.