Bearing witness — what it is, what it isn’t

I’m a history nerd. I love the stuff.

This is the anniversary of the sinking of the Titanic. I had the dizzying experience of being part of an online re-enactment. (I know, it sounds crazy, but it worked!)

People got so caught up in the re-enactment that there was real heartache over the screams of the doomed and the bitter anguish over lives we couldn’t save, and watching the lights go out one by one. The idea of “bearing witness” was tossed around, but without form, as it often is. I thought it needed clarifying.

Therefore, I wrote the following, in the aftermath. I didn’t trivialize the pain, because who knows what horrors others will face in their lives afterwards. (I can’t even imagine what I’ve been through so far, let alone guess what’s next, and I’m pretty sure I was there.) So, I treated the heartache as perfectly valid — chances are, sooner or later it will be, and we can all use a little clarity at those times.

What I wrote resonated so strongly with so many different people that I thought I should put it here, too. (All these posts are printable, shareable, and linkable, so don’t be shy about sharing.) Hope it helps.

A word to those new to mortality in action…

I was a nurse, starting in HIV care 27 years ago, then Emergency/Casualty, then home care. Then I lost 9 loved ones in 18 months. Then I developed a subtly brutal disease that destroys the body from the inside out, for which the treatments are occasionally fatal.

I have watched a lot of people die.
(pausing for breath, and for the color to come back into the world)
[Okay, moving on.]

There are two ways to cope. One is to shut down and depersonalize, which is increasingly common. As a temporary measure, it’s fine — gives you time to get it together. The humane thing to do, though, is move on from there.

Another is to look closely at where your skin ends and another’s begins, and let them have their experience while you notice that it sucks for them — and you keep breathing.

This is what is meant by bearing witness.

Separating Self from Other allows us to be present while another faces the worst moments of their life.

Knowing that it’s not you dying, or writhing, or what have you, frees you up to stand outside that hell and throw the glowing line of awareness to the one inside it.

That is bearing witness.

I won’t discuss my illness here (check out livinganway.com if you want to see the sunny side; rsds.org if you don’t) but I often wind up in an unbearable state of being. I’m an old hand at looking back at life from the slopes of Hell.

While (keep this in mind) there is nothing anyone can do about my being in an unbearable state, there is only one thing that reminds me there is something beyond it, and all I have to do is get there.

That one thing is a loving look, or kind word, or one of my partner’s frankly feeble acknowledgements of recognizing that my body might as well be burning alive. It’s so small from the outside — but it lights up my world.

It’s a thread of golden light that holds me to life. Just a thread of golden light. But it’s enough.

Bearing witness is not about changing the outcome.

Bearing witness is simply the only possible redemption of these terrible moments.

Redemption is not about undoing anything. It does not change the outward reality.

It changes the unbearable inward blackness just enough that the person who is looking back at you from the slopes of Hell, can find the extraordinary inward strength to keep going until it’s over — one way or another.

You who are well and safe have no idea how important that is, but please, let me assure you that it’s a gift beyond reckoning to do that for another.

Bearing witness to those screams, those unspeakably harrowing last moments — whatever they are — you can’t see their faces change, because their reality is just as bleak right now — but, inside them, they found their steel; they found their peace.

For all those on the Titanic and all those who look back from the slopes of any other Hell, let me say, thank you. You make all the difference.

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Many itchings!

Another great question about an ordinary (for CRPS!) change led to another “Isypedia” blurch. Here goes.

Once in awhile, something changes out of the blue. What is a CRPSer to think when suddenly caffeine and chocolate cause massive itching?

Nerd note: Yes, the word “caffeine” is used differently in ordinary speech than it is in botany or food chemistry. That’s okay.

There is a chemical class called xanthines, of which caffeine is one member.

Related chemicals, with very similar or nearly identical activity in the body, are lumped together and called ‘caffeine’ in ordinary communications.

“Why? Why this sloppiness??” I hear some of you cry.

Because most people are not food chemists, and what’s important is what it does to you, not exactly what to call it.

So…

Technically, tea contains theine, mate contains mateine, coffee contains caffeine, and chocolate contains theobromine (and sometimes a tiny amount of caffeine.)

But…

Neurologically, it’s all “tomayto, tomahto.”

Back to our blog post.

On developing food reactions in CRPS

First, it’s not unusual (yet not really normal) for CRPSers to develop new sensitivities and allergies out of the blue. This has to do with several things, as a rule: the digestion doesn’t break down proteins as well as it used to, and those proteins are more provoking to the immune system than they would be in a healthy body.

It’s worth noting that allergies (and many sensitivities, which can also be histamine reactions — another note for my fellow nerds) happen on the basis of molecules, not teaspoons or larger doses — and, at that micro level, everything has protein the body can react to.

Second note on allergies is, that most of what we eat contains more than one thing we could be reacting to. If I thought it were the caffeine and chocolate setting you off, I’d want to check those labels and look for similar additives.

If you’re using medical marijuana (great when it works! Wish it worked for me) then look into how it was grown. Aim for organic and, if possible, outdoor-grown. If you have allergies or sensitivity to iodine, egg, etc, then you may need to dig further and avoid marijuana grown with fish compost, chicken manure, or what-have-you. You may need to cultivate (as it were!) a relationship with an individual grower who can meet your needs.

On neuro causes of itching

However, you’re specifically noticing reactions from caffeine and chocolate, which — specifically — can activate the C-type fibers in your nervous system — the very fibers responsible for the sensation of itchiness and also for the surface hypersensitivity that go with CRPS.

So, it’s very possible that it’s not so much an allergy (which is a protein response) but that you’ve developed a neurological hypersensitivity to these C-fiber-stimulating chemicals.

In that case, it’s not just a question of avoiding caffeine and chocolate (sorry!!!) but also supporting the C-fibers so they can calm the heck down and not go further into their over-reacting.

On other causes of itching

Have you changed meds in the past few weeks? MANY meds can cause itching, especially neuro-active meds — and most meds that we take are neuro-active in one way or another.

Check with your pharmacist or doctor right away if you develop itching with a new medication.

Have you changed laundry detergent or other things that come in contact with your skin? These could increase your skin’s reactivity.

If your neurological system is being hyper-reactive, it’s not a bad idea to switch off of scented products. Keep in mind that they don’t have to test something for safety before marketing it, and their profit depends on consumers not asking too many questions. Just food for thought.

Things to try that don’t require a doctor

Some things to try for itching, if you aren’t already doing them, are nutritional (something to swallow) or topical (something to apply to your skin.)

Nutritional care for itchy nerves

– Vitamin C, preferably Ester-C (food-based, and specifically easy on the stomach and slow-releasing.) Vitamin C is one of the few food/nutrition things specifically studied in CRPS. It’s wonderfully neuro-protective and most forums recommend making it part of daily life. The range studied was 1,000 to 1,500 mg per day. Some people take 500 mg /day with good results. I take 1,000 mg.

– Magnesium, either as digestible chelates in capsule form, or as Epsom salt in a not-too-hot bath. This can really soothe hyper-reactive nerves, especially the C-fibers. If you take the capsules, take with food, partly to improve absorption and partly because magnesium can be a little hard on the stomach. (For internal use, stick with the chelates. Don’t drink Epsom salt solution unless you want to clean out your GI tract really fast.)

– Other nutritional supplements that can help moderate that itchy C-fiber activity are, believe it or not, Calcium (food-based, not rock-based) and vitamin D3. The physiology is kind of complex, but it boils down to this: Calcium not only builds bones, but it handles certain kinds of nerve transmission; D3 stabilizes the behavior of Calcium, so it doesn’t wander off in the wrong direction. Not surprisingly, CRPSers (and everyone who’s chronically ill, even in sunny locales) tend to be very low in vitamin D3. Talk to your doctor or pharmacist about your condition, your symptoms, and what dose of D3 to start with. Although too much can be toxic, that’s not something you’ll be dealing with for awhile! Unless you’re tracking this already, you’re likely to be quite low in D3.

Topical care for itchy skin

– Certain oils can help tremendously.
* Emu oil (not suitable for vegetarians) is packed with antioxidants and anti-inflammatories. It’s absolutely amazing for pain. It’s extremely well-received by most skin, and absorbs several inches deep into the tissues. This makes it a great carrier oil, as it can carry whatever is added to it right into your tissues. Be sure to get AEA certified emu oil, as that’s the only kind known to be 100% real. (Because it’s not cheap and not regulated, all kinds of things get tossed into a bottle and labeled “emu oil.”) Cheapest brand of AEA certified I know of is Pro Emu, available from proemu.com and amazon.

* Sweet Orange essential oil. Always, always blend this at 1:15 or more with other oils, because it can cause chemical burns (first time I used it in a bath I didn’t dilute it! Never making that mistake again! LOL) In other words, a few drops of Sweet Orange oil to a couple tablespoons of any vegetable oil or emu oil, makes a great treatment for that C-fiber itching.

* Clove essential oil is better for nerve pain (been used for thousands of years for nerve pain) than it is for itching, but it sometimes helps me with my itching. Same precaution about diluting the heck out of it, applies. I mix it with Sweet Orange and Emu oil for a one-size-fits-most solution.

– The herb Melissa officinalis (also called lemon balm), either as tea, hypercritical extract capsule, in the bath, or on a washcloth used as a compress, can also be helpful. It, too, has been used for thousands of years to treat inflamed and over-reacting nerves. It’s good for itching and great for nerve pain. It blends very well with chamomile, which also has anti-inflammatory (not NSAID-like; works differently) and can soothe itching.

– Some find oatmeal baths helpful, especially when it’s an allergy itch. (Sometimes it helps with a C-fiber nerve itch.) Put rolled oats in the blender and whirr the heck out of them to make your own “Aveeno bath”, and use about 1-1/2 tablespoons in your bath.
I can’t go near oats because they trigger gluten issues for me, but that’s my problem. If I could use oats, I’d add a few drops of orange oil mixed with carrier oil right into the whirring blender and whip it right into the oat powder.

What’s cheapest and most reasonable of these things depends on your situation and circumstances. I hope you find something helpful here.

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