My letter to a neighbor tonight. It’s amazing how people shirk their responsibilities. I did not even touch upon the dander dance with my clothing and purse. Dude, it’s a major fucking hassle to have any interface with cats.

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Dear Neighbor,

I live across the street from you. We have chatted a few times, including this morning, and I always have experienced you as a very friendly and sweet man. (I still remember when you went out of your way to bring me my flying red umbrella.)

Tonight when I came to talk with you about the incident of your cat climbing into my car, I shared with you my distress over the situation, revealing that I have a severe allergy to cats. Rather than telling me that I “should not have left my sunroof open,” I would have appreciated your taking responsibility for your cat and demonstrating concern for the consequences of your cat climbing into my car.

Anytime I am near cat dander, even if it’s on the sweater of someone sitting next to me, I get a severe response — including extreme difficulty breathing, nonstop sneezing, and an itchiness so unbearable that I am left wanting to claw at my eyes and skin. Suffice it to say, I avoid cats like the plague. The fact that a cat had been rolling around in my car meant that everything in my car had been contaminated – which in turn meant that getting into my car risked getting very sick, very fast. I felt especially upset, because I urgently had to drive somewhere tonight, and I knew that meant risking an asthma attack. I did in fact end up having one while driving, and I am still recovering from that episode, as I write this.

In addition, tomorrow I am scheduled to go on a trip. I needed the morning to get some work done before leaving, but now I will have to spend it removing everything from my car, putting it in plastic bags (until I can hire someone to thoroughly clean it all for me), and getting my car professionally cleaned. Not only do these consequences cost me time and money, but they also cause me anxiety. Dander is tough to remove completely, and I am apprehensive about the possibility of suffering another asthma attack while on a long drive. If that does happen, I will need to turn around and cancel my trip altogether – which has its own chain reaction of consequences, financial and otherwise.

Please consider this: If you accidentally left a window open in your house, and a neighbor’s dog climbed in and caused damage in your home, how might you feel if the neighbor’s only response was telling you that you should not have left your window open?

Loolwa

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Today I went to my endo for a check-up. The nurse who usually works there – who is totally awesome not only because she wears purple smocks but also because she remembers and adheres to all my sensitivities — was not there, and I got this studentish-looking nurse who took quite a bit of time with basic stuff. I gave her a heads-up that I have low blood pressure (the healthy athletic kind, not the anemic kind) and that I need her to use a manual cuff so that she can stop before the blood pressure reader gets super high, because I end up in bad pain when it gets past a certain point. She said OK.

She then proceeded to do an elaborate procedure putting together a manual cuff. Then, when she was pumping, the pressure was fine until it went from “starting to hurt” to “excruciating pain” in, like a nanosecond. “It’s hurting,” I said to her. That’s usually the cue where other practitioners let the gas out, so to speak, and the pressure starts going down right away. She, however, just stopped pumping.

“Please stop,” I said. “OK,” she said again, not making a motion, watching the numbers on the screen. A few seconds ticked by, and I was ready to rip the damn cuff off my arm. Quite frankly, I should have. “I need you to stop!!” I said urgently. That’s when she let the gas out. But the damage had been done. I’ve been in pain since that time, and it’s been about eight hours. I anticipate having a hard time sleeping tonight.

I often err on the side of being polite and sparing people bad feelings, but this time I believe I was scowling, and I made no attempt to hide the fact that I was in pain. The studentish nurse apologized and said that in the future, I could ask to not have my blood pressure done. I was tempted to ask her why she didn’t move when I said stop, but I figured she obviously felt bad, and there was nothing to be done to undo the situation anyhow, so why add to her stress.

But I often look out for other people’s feelings instead of taking care of whatever business I need to take care of, and I do wish I’d asked. Simply because I’m curious and because it’s good feedback for another situation – ie, to understand the psychology of medical types.

Anyhow, off I go to bed with an ice pack. I’ll dance it out tomorrow.

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In this climate of New Age bullying, where people have decided that we choose our life circumstances (even those out of our control) and that we create our realities (ditto on the out of control bit), I feel so very vulnerable, when I openly share my experience of injury, pain, and suffering, as well as when I openly call out and challenge social behaviors that contribute to the injury, pain, and suffering of myself and others.

We are living in a time where condemnation trumps compassion, and where spiritual smugness is at the throne – at least in the world of holistic health, which is the circle where I run. For this reason, when I share a story of triumph through debilitating pain that nearly tore my life apart, so many people focus not on my fierceness, courage, and tenacity, but rather, on the situation that created the pain in the first place. In other words, they judge me by my circumstances instead of by my character. In addition, when I offer up my story, to help raise awareness of how we can all be more sensitive and awake and considerate of each other, I very well may get judged by the fact that people in my story were unkind to me – as if I were responsible for creating their actions towards me.

This attitude is FUCKED. It actively encourages self-flagellation, and it actively discourages outspokenness. Abuse, trauma, and insanity flourish in silence. Behold the feminist movement: When women started sharing personal stories, they discovered that the personal was political – ie, it was not them or their particular lives, but rather, there was a social steam-roller out to collectively squash women.

The New Age bullies can fuck themselves and their Law of Attraction cohorts. I will not be silent, even when I feel vulnerable. And I encourage you to speak up as well. Tell your story. The more we speak up, the more we are seen, the more knowledge we have, the more we find each other and the more power we have to change this crazy-assed world.

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So I decided to say something to the head-banging guy from the party tonight. I found him on Facebook and sent him this message:

We met at the post-Hanukkah party tonight, and I want to address something that came up:

I let you know that I do not shake hands, because I did not want you to take it personally when I did not shake yours. The back story is that I suffered from a decade of chronic and debilitating pain. While I have self-healed from that pain, I still have a very sensitive body, and shaking hands usually triggers pain that can last a few hours.

When I told you I don’t shake hands, your response was to proffer your elbow. When I said, “I don’t do that either,” you made a fist and started coming down on top of my head, as if you were going to bang my head with your first. Not only was that gesture decidedly unfriendly, dare I say bordering on violent, but while you stopped your first an inch or two above my head, the energetic momentum continued. As a result, I ended up feeling as if I’d just been stabbed by an ice pick, and I’ve been suffering from head pain in the two hours since.

I’m feeling upset about and frustrated by what happened. Obviously you did not know about the sensitivity in my body. It is specifically because you did *not* know me or my circumstances, however, that I question why you kept pushing the issue – ie, why did you did not just say “ok” when I said I do not shake hands.

Thank you in advance for your care and consideration of this matter. I look forward to hearing from you.

Loolwa

Here is how he responded:

Dearest Loolwa, I was kidding and trying to be brotherly. There was no energetic momentum and your headache is probably the result of you thinking about it to much. I have no violent tendencies nor any desire to hurt you or anyone for that matter as I dedicate my life to helping people who are in pain and I feel it is hurtful that you would throw such unkind accusations at me.

Also would like to apologize if it did cause you to be upset.

Don’t mind me I’m just a grain of sand in the sands of time and maybe someday you will look back at this whole Chanukah party thing and will be able to smile

Here is how I responded:

Thank you for your apology.

Questioning your behavior in one interaction does nothing to discount your awareness or general awesomeness in countless other interactions. We all have blind spots and places where we can learn from the experience of others.

I invite you to read this cover story I wrote for AARP magazine, on drug-free remedies for treating chronic pain. As you’ll see, the opening anecdote is about a woman whose chronic pain left her so sensitive that even walking *near* her made her scream from pain.

For those who are physically sensitive, energy can be as intense as physical touch. When you did that motion coming down on my head, the energy did in fact trigger an immediate jolt of pain, which had nothing to do with my thoughts. Please consider that just because you have never experienced something does not mean that it is psycho-somatic or otherwise invalid. Please consider responding with compassion and curiosity instead of denial and dismissal.

When we speak up, and when people open their hearts to listen, the world changes. The party interaction between you and me is fairly typical of, and is just one of, countless interactions that people with invisible disabilities experience day-in, day-out. Most people say nothing. Most of the time I say nothing. But the less aware and sensitive that able-bodied people are, the less that disabled people feel comfortable or safe going out in the world. To the contrary, the more aware and sensitive that able-bodied people are, the more disabled people feel comfortable or safe going out in the world. Our lives are made up of little tiny moments and little tiny interactions. It’s unrealistic to address every interaction, but sometimes it’s worth it to take the risk to reach out to someone, see what happens, and learn from the experience.

All the best to you, and maybe I will see you at an upcoming event.

Loolwa

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