December, 2018

Life with Lupus: Light and Pericarditis

I thought to check in and share what the latest experiences have been regarding light in my life of lupus. As the days grow shorter, I celebrate the darkness. Less light makes life so much easier. Exposure to UVA and UVB can jump start a lupus flare.

On the downside, I find this time of year with the slant of the sun, glare increases: off the dining table, the tile, granite. Ha! Even Christmas trees are covered in a light that glares.

Thinking that the glare is the trigger, I was able to get prescription sunglasses. Working with them on in front of my laptop and using less precaution in the house, not darting through bright rooms, still resulted in a flare. There's the possibility of some other variable in the mix, but my gut is that sunglasses, alone, are not enough to allow me to sit in the light inside our house. I haven't been able to find research on such specific qualities of light.

Aside from sitting in a dark room for a couple days to recover from flares, my latest lupus manifestation is pericarditis. A $15,000 ER visit and further followup tests gave me this diagnosis. Inflammation triggers fluid in the heart sac which very much mirrors a heart attack. The fluid and pain eventually pass, in that case after 3 hours. I've read it can linger days or weeks. Scarring often results, which exacerbates the condition. So there's my new symptom that warns me to escape the light, work less, and breathe. Since the hospital visit, I've only had short episodes.

One note: even with insurance, many hospitals will adjust their fees with financial aid according to your income. It's worth submitting the paperwork, often found online.

The first image above is my collage from the former site, Polyvore, and the second is linked to the Mayo Clinic source.

While I appreciate the dark, I think of those struggling with depression in the absence of sunlight this December. Blessings on you.

A Gift of Words: Archbishop Tutu

“Dear Child of God, you are loved with a love that nothing can shake, a love that loved you long before you were created, a love that will be there long after everything has disappeared. You are precious, with a preciousness that is totally quite immeasurable. And God wants you to be like God. Filled with life and goodness and laughter—and joy.

“God, who is forever pouring out God’s whole being from all eternity, wants you to flourish. God wants you to be filled with joy and excitement and ever longing to be able to find what is so beautiful in God’s creation: the compassion of so many, the caring, the sharing. And God says, Please, my child, help me. Help me to spread love and laughter and joy and compassion. And you know what, my child? As you do this—hey, presto—you discover joy. Joy, which you had not sought, comes as the gift, as almost the reward for this non-self-regarding caring for others.” Desmond Tutu

Collage: my art from the former website, Polyvore

Open Letter: To the Annoyed-by-Protesters

My collage from the former site, Polyvore

Twice in one day, I brushed against people who are annoyed by protesters.

1. The first claimed that after losing the House of Representatives, she would not be protesting as so many others had recently. She had restraint and would acquiesce to the democratic process.

2. The second complained he was tired of people marching and doing nothing.

So, I'd like to address these two. The first I know has walked through tragedy, has been greatly hurt by the church. The second I know works with pediatric cancer patients.

To the Annoyed,

I ask you to tap into the pain you have experienced. Recall the grief and anguish you have bravely walked. Now, without setting aside your politics and belief systems, I ask you to consider this: the folks who are walking, carrying signs, shouting, and gathering are people who have been raped, shot, sexually harassed, denied rights, silenced, marginalized, excluded, bullied, suffered prejudice, are threatened, and more. These are hurting and crying out for their loved ones who have been hurt. They are worried about our earth and its inhabitants.

The marching are gathering because, collectively, they have experienced pain and injustice. Together, they are shouting to be seen and heard for change. Each has dignity and belongs.

I ask you to make yourself vulnerable. Recall your own pain and then lean into theirs. Until you see the individuals, wounded as you have been, there is no room for empathy. There is no compassion and no problem solving. It doesn't matter if the wounds are from the same source or the same line of story. The hurt is common among us. 

The marching is not useless and doing nothing. The marching is calling out the pain. It is laying before the social consciousness injustices that must be addressed. It is motivating people to run for office. It is alerting leaders what matters to constituents. It is calling hope to rise from all corners, and it is inciting action for change.

In the words of Thich Nhat Hanh:

"We have to see that we are they and they are us. When we see their suffering, an arrow of compassion and love enters our hearts. We can love them, embrace them and find a way to help. Only then are we not overwhelmed by despair at their situation. Or our own."

My call applies to all in various parties and religious systems. These two people just happened to interact with me this week. The same empathetic action must be engaged by all for all. When our initial reaction is defensiveness, we can turn to wonder, instead.

Lean in. Empathize. Help.

I Reject Your Shame, Again

My collage from the former site, Polyvore

I'm in the midst of year two, reading about trauma and suffering. During that time, I've come to dwell on Dr. Brene Brown's studies on shame. Taking those concepts and looking at the rage and grief of survivors during the Kavanaugh fiasco, I have a few thoughts.

If anger is an acceptable secondary, social emotion covering other internal feelings, I'm pondering what else is underlying the nationwide outrage felt by so many sexual assault survivors, and what our critics don't understand. I, personally, felt betrayed, gut-punched, grieved, discarded, and ignored by the experience. And then I felt anger.

In Daring Greatly, Dr. Brown points to the 2011 study funded by the National Institute of Mental Health and the National Institute on Drug Abuse (Proceedings of the National Academy of Sciences, 108, 15: 6270-6275) and its conclusion: pain from social rejection and disconnection is real pain which the brain registers like it does physical pain. Speaking for myself and from my experience with sexual assault, I was shamed into silence by societal pressure in my childhood. I was further pained by this shame. 

Dr. Brown writes the antidote to shame is empathy. Because shame is a social concept, the social wound needs a social balm to heal. This is exchanged through sharing and dialogue. Recently, the assaulted in our country have found self-compassion to rise up and out of society's shaming message. We have found our voice to say, #MeToo, and this sexual assault behavior and shaming must stop. At a national level, we surged forward to stand by Dr. Ford. We believed her, regarding the horrific assault she endured. Witnessing her testimony, we relived our own assault for days, weeks. We entered the social arena where a balm could have been provided. Empathy could have been given. And it was given for a moment after Dr. Ford's testimony, and then it was withdrawn for a predetermined, desired vote.

After making herself completely vulnerable before a worldwide audience, Dr. Ford was left standing, not believed. Every survivor who stood at her side was left, told and shown we are still disconnected and unworthy of being listened to and believed. This pains us deeply. Our rage rises, above the pain.

So now, we continue to work hard to not feel shame. We reject the cultural shame that has tried to bury us again. We reject the president's paper-thin investigation and the majority of the senators' votes. We reject the opinion of those who judge us an angry mob and make no effort to understand and empathize. We stand shoulder-to-shoulder, shouting what has been done to us and repeated through the treatment of Dr. Ford. Even if society won't share empathy to balm our social wound, we will empathize with each other and every soul brave enough to share in our singing over the bones. We belong. We will not be quiet. I will not be shamed any longer. I reject shame. I will not be disconnected from the group because I was sexually assaulted. We, I, am worthy of love.

Trying to Survive: #believesurvivors

Trying to survive the ignorance and lack of compassion. #believesurvivors

#BelieveWomen, a Cultural Correction

My collage from the previous site, Polyvore

I'm seeing disagreement within the conversation concerning #believewomen. I'm hearing the debate among friends, as well as it being presented in media outlets. One view is that to #believewomen causes one to #doubtmen, and the action potentially dismantles the justice system. I disagree. To #believewomen is a cultural correction that causes the justice system to be engaged for all.

Anna Maria Archila, Maria Gallagher, Senator Flake, and an elevator:

“I didn’t tell anyone and you’re telling all women that they don’t matter, that they should just stay quiet because if they tell you what happened to them you are going to ignore them,” she said to Flake, who stood in the corner of the elevator looking down.

“Look at me when I’m talking to you,” the woman yelled. “You’re telling me that my assault doesn’t matter, that what happened to me doesn’t matter, that you’re going to let people who do these things into power.”

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