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Background Life with multiple sclerosis

Bottled Water

Bridge across the Helmand River. Photo by Mohammed Omar Lemar

A long time ago……no, too depressing.

Some time back……no, too vague,

Once upon a time…..yep, that’ll do.

(Ahem) Once upon a time, I found myself with my ODA, sitting on a bridge over the Helmand River in Southern Afghanistan.

A pre-dawn raid was being conducted in a nearby village by another team and we were there to stop people from leaving the party early via the bridge. Due to the timing, we were forced to skip our morning coffee and as the sun rose and things calmed down, our Afghan Army counterparts broke out the necessary bits and began to brew up a pot of tea.

When it was finished, they offered us some and a teammate asked if it was safe to drink and did I want a cup? I replied that if it was made with bottled water or he saw it boiling, then it was safe and yes, I would very much like some morning caffeine. He went back over with the interpreter, who verified that it was indeed made with bottled water and returned with a cup for me.

As I sipped mine, I looked out over the river and watched two men washing a car in the shallows, a man and his son watering their goats by pushing the whole herd out onto a sandbar, and several women washing clothes while 3 children bathed nearby.

I was near the end of my cup, thinking that the tea had a rather earthy aftertaste and as I watched one of the goats lift it’s tail to relieve itself in the slow flowing water, I felt some grit between my teeth. The tea was sweetened with raw sugar, so an undisolved grain or two was to be expected, but I looked at the, now visible, bottom of my cup and upon examination, the grit was unmistakably sand, with a small pebble or two added in.

I waved the interpreter over and explained my concerns. He went back to ask our tea makers about the water quality. He was raised in Southern California and even though English wasn’t his first language, it was the one he slipped into as I heard him exclaim, “What??!! Oh, no!”.

Turns out that there was a bit of misunderstanding/misinterpretation on both sides. The water had come out of a bottle. An empty bottle that had been filled at the river’s edge, near the base of the bridge. It had also not been boiled because time was variable and the thought was that boiling would make it too hot to enjoy right away.

I dug through my bag and enjoyed a nice chaser of Ciprofloxacin and gave some to everybody that had drank the tea. Well, almost everybody. I didn’t get to everyone in time and that unfortunate soul had to suffer, both the wrath of the river and my less than stellar bedside manner, but that’s another story.

The point of my story today is to make an addition to a previous post about understanding the language and managing expectations between you and your healthcare team. The information you and your team share has to be clearly understood by both parties, as do any expectations. As the head of your own healthcare team, (which you should be, by the way), the responsibility falls on you.

Those of us with multiple sclerosis have, medications, therapies, assistive devices, etc, etc, to consider. It behooves you to understand and have a realistic view of the risks and/or benefits of all these.

For example, I have an intrathecal baclofen pump. The decision to have one implanted was not entered into lightly and was not made before weighing every expectation, possible benefit, and risk. In the end, it was this honest and, understood by all parties, “weighing” that made me decide to accept the risks and inconveniences in favor of the possibility of a better quality of life.

That’s an extreme example of both sides understanding the difference between bottled water and water from a bottle, but hopefully the point is made. When it comes to MS, make sure you understand what is being said to you and that what you’re saying is understood.

Categories
Life with multiple sclerosis

Beach

Photo by Michala Hofmeister

I am late with a post this week, but in my defense, I was at the beach with my family all last week and am still in lazy, vacation mode. I thought I’d better post something in the way of explanation, so as not to upset my tens and tens of readers.

I had a wonderful time and though my days of sun worshipping are far behind me*, I was still able to enjoy the beach and frolic…..(yes, I frolic), thanks to adaptive equipment (like the all-terrain wheelchair in the photo) and more importantly the help of my spectacular family.

I was once loathe to ask for help. I’m still somewhat hesitant, but that’s just foolish pride rearing its head. Truth be told, I never even had to ask for help. It came without bidding from the depths of my family’s love and good graces.

I’m not sure what I ever did to deserve it and I hope I make myself just a little worthy of it.

That’s it for this week. An explanation and a weak attempt at expressing my gratitude for family making the inaccessible…..accessible.

* I never really had sun worshipping days. Although it’s grey now, my hair was once blonde and my eyes are blue. We are of Northern European descent and are a pale, non-tanning people.