say THIS not THAT

What a workweek!  Last week I got a new project assignment, and have spent most of the weekend, workdays, and worknights crafting a slide deck for a software pitch, including making lots of graphics.  So these statistics infographics I’d been making every day — suddenly I had no creative energy left in my body, heart, and mind.

Tonight’s offering is, instead of a stats graphic, a chronic illness graphic. You can be equipped with better words, instead of saying frustrating or offensive things to a friend who has a disability, a chronic condition, an invisible illness.

say-this-not-that.png

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you know you have IC/PBS when…

Yesterday I had a stomach bug, so between waking up at 4am and going to bed at 9pm, I drank one 16-ounce bottle of ginger ale… and nothing more. I hoped this wasn’t going to send my bladder into spasm, because I normally drink a full glass of water each hour between breakfast and supper. Alas, it did cause a Painful Bladder Day, so to keep the mood light, I’ve been playing with this list throughout the day.

  1. You never go anywhere without an extra pad. Or ten.
  2. A colleague raises an eyebrow when you excuse yourself from a meeting for a bio-break.
  3. For the third time.
  4. In an hour.
  5. You get really good at not doing The Peepee Dance.
  6. Or you’ve had so much experience that you add artistic flourishes to your Peepee Dance, rendering it unrecognizable as such.
  7. Your underpants drawer has Nice Panties, Period Panties, and orange Pyridium Panties.
  8. For that matter, you buy all your towels and sheets in shades of orange.
  9. You never go more than 10 minutes without drinking some water.
  10. You keep your urology office’s number on speed dial.
  11. You can’t remember the last time you had OJ.
  12. You keep strategic stashes of towels. And wipes. And extra pads.
  13. You never ever let your pyridium run out. Or your prelief.
  14. You have expert knowledge on the acidity of foods and beverages.
  15. Your urologist’s nurses recognize you and call you by name.
  16. You reflect nostalgically on the days when you could eat Mexican food.
  17. You throw out all your pantyhose and leggings.
  18. ….

So what have I missed?  Let me know in the comments (or on social media)!

disability and shame

TIL that I have a substantial amount of shame all knotted up with my disability.

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Shame. Photo by maureenml0521.

A disclaimer, before I tell the story: this came about because of a disappointment. Because I know that a couple of my colleagues follow me on social media and read this blog, I want to make my purpose for writing this post very clear.  This realization came about because of a disappointment. It’s a disappointment that was not intended in the slightest, a disappointment that I had the ability to turn around, a disappointment that I don’t blame on anybody because it’s just a thing that happened.  What I want to explore here is not the sequence of events, but my own internal response to them, the affect that I have felt and some of the sources of that pain. But to get to that, I kind of have to tell the story.

 

Last week, I was asked to help write a proposal. So I poured time and energy into it, and I had a lot of fun working on it, and I thought it was a kickass document. The sales team thought it was pretty kickass, too, because they not only said so publicly a few times (yay!), but they invited me to the presentation with the client.  I was so touched by this gesture. I hadn’t been invited to anything like this here before. How exciting–and flattering–that they wanted to include me!

Here’s where the disability piece comes in. I have vertigo. I have vertigo every day, severe enough that it causes me to fall, severe enough that I am on the edge of vomiting at least once a day, severe enough that I can count the number of times I’ve driven in the last three months on one hand. Continue reading →

disability

This past weekend, I came across a quotation about migraine. A World Health Organization study had said that a person experiencing severe migraine is as disabled as a person experiencing dementia, active psychosis, or quadriplegia. I read it out loud and said, “Well, clearly mine have only been moderate.”

Then I realized that I’ve driven myself to work three or four times over the last three or four months. That’s pretty disabling.

Continue reading →

Recent happenings

The last few weeks have been packed full.  There’s been some amazingly wonderful stuff… and there’s been some real crap.  I’ll start with the thanksgivings.

I’ve talked for a couple years about becoming a spiritual director, and over the last about-9-months, I became one.  I haven’t been to any classes or training.  It just sort of… happened!  My alter ego (can a Sister be an altar ego?) has had several people come to her with questions, and the relationships formed into just this model.  One is a recent convert to Christianity, who is being baptized at Easter.  Another has allowed me to witness their conversion from not believing to being willing to admit the Divine might exist to believing with all their heart.  Another lives in an abusive relationship.  All are broken, as I am.  All are a bit quirky.  All are very intelligent. All have struggled with depression. I cannot tell you the blessings I have received from this work.  I am in awe at how God can work through us, in such deep and powerful ways.  There’s a major event at my parish church in a few weeks, and I’ve donated 3 months of spiritual companion services (because I much prefer companion to director).  I hope this ministry is helpful for God’s children.

The new rector at our parish is fabulous!  He is plugged in to the Holy Spirit and actively listens for God to point him and our church to our next work for the Kingdom.  And — you’re never going to believe this! — I’ve joined the praise band for our contemporary service.  Yup, I’m playing flute with the band, and I’m having a blast doing it!  I have missed making music terribly, and I’m so glad to be able to serve the church in this way.  It’s been quite a while since I’ve played in jazz bands or done improv, so I’m stretching those skills and taking some risks.  That’s almost always a good thing.

God willing, I will take my life vows with the Anglican Dominicans this summer at Chapter.  I’ve been leading our annual online lenten retreat, on the theme of narrative, and that’s been fun.  I’m finding that our mind-heavy Aquinas-Dominicans are less interested than our more heart-oriented Eckhart-Catherine-Dominicans, but that’s okay.  A couple weeks ago, I heard our new fabulous rector refer to a certain mystic as being “pretty out there,” and shared my (very slight) offense at this with my husband later.  He asked me, “What, you mean to tell you that you aren’t pretty out there?”  I said, “Well, yeah, but he shouldn’t say that about all my fellow mystics!”  Then I laughed at the sheer ridiculousness of this, especially because I’d written a reflection just a week before about mystics and how we’re all sort of “out there.”  I can be pretty protective, but it’s weird to be protective of people (saints, even!) who have been dead for centuries.

I am joyfully living into another new ministry at the parish.  Our “family area” in the nave is in a place where you can’t see the altar, so when the children become bored because they feel excluded from the Important Adult Business — which worship should never be! — they can become noisier and annoy the Important Adults around them.  Being a rather untall person myself, I know how icky it can feel when you can’t see what’s going on.  So I now sit with all the children who want to, right in the center aisle, on the floor, where we can all see what’s happening during the Eucharistic Prayer.  I like to say that we do this because churches are short-sighted that they don’t provide sycamore trees for us, like Zaccheus climbed to see Jesus.  When I used this line with one gentleman at church, he said, “We could do that!”  We had fun exploring what it would be like to have a tree in the middle of the nave: the symbolism, the places to climb and sit, the ways we could decorate it and use it as part of our worship.  It was fun, in a totally liturgy-geeky way.

I continue to work part-time on disability, and I continue to wait for my disability claim to be approved.  It is in appeal, and the decision is due any time now.  Meanwhile, I owe about six months of child support, am perpetually a month behind on my car loan, and seem to stay about a month late on most of our other bills, too.  Some days I want to echo Teresa of Avila: God, if this is how you treat your friends, it’s no wonder you have so few of them!

On Wednesday, I had my second appointment with the new rheumatologist, who turned up an active chronic Epstein-Barr infection.  So that goes onto the diagnosis list, along with Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome, Proportionate Short Stature (yeah, I’m Little), and a severe Vitamin D Deficiency.  I’ve learned some things about these conditions this week, and I’m not quite sure how I feel about it all yet.  For example, I’m finding increasing numbers of people labeling CFS as an auto-immune disorder.  I’m finding CEBV described variously as a form of CFS, a potential cause of some cases of CFS, and as a separate (but similar) disorder.  I’m learning that EBV will become active pretty frequently, but only becomes symptomatic in those whose immune systems are faulty somehow.  I’m learning that there are physical changes in the brains of PWCs (persons with CFS), a reduction in grey matter and increase in white matter — so the “brain fog” and other cognitive effects are not only real, but are based in physical matter.  This terrifies me.  I’ve learned that each recurrence of EBV infection increases one’s likelihood of developing lupus later in life.

The rheumatologist has recommended to my primary doctor that she send me to a specialist in infectious diseases, and I’m expecting to have my immune system checked out as well.  I need a new echocardiogram — these are recommended for EDSers to have annually — and a bone scan.

It’s all just so much stuff.  And oh yeah, here comes Holy Week.  Maplestar and I are ready to sleep until Ascensiontide.  I expect there’s a significant number of clergy and other Professional Christians who feel the same way.

Do you know what month it is?

It’s National Disability Employment Awareness Month, established by the US Congress in 1988.  The theme established for this year is one that I’m very passionate about, the value brought to workplaces, places of worship, communities, and our nation by diversity.

“Talent Has No Boundaries: Workforce Diversity INCLUDES Workers With Disabilities”

The theme serves to inform the public that workers with disabilities represent a diverse and vibrant talent pool for hire. This theme epitomizes Secretary of Labor Hilda L. Solis’ commitment to “good jobs for everyone.” “The solutions and innovations applicable to the successful employment of workers with disabilities impact the entire workforce, including aging workers, injured workers, at-risk youth, women, people of color, and unemployed and underemployed workers,” said Kathleen Martinez, assistant secretary of labor for disability employment policy.

I’ve written more than one post on this blog describing my disability journey, from “something’s wrong with my shoulder” to surgery, into chronic pain, to my diagnosis with Ehlers-Danlos Syndrome two years later, through my struggles to continue working and mothering and keeping house with increasing pain and disability, through bankruptcy, through losing the house I’d worked so hard to buy on my very own, to admitting to maplestar that I could not handle living on my own any more, and up to the present where I’m on medical leave from work, my initial short-term disability claim denied (in appeal!) so that I’m working a fraction of my time and earning a fraction of my salary.

What may not always be clear when I write here is how much my employer has done to help me keep working.  I am a professional woman, nearing 40 years old, who has been working full-time since I was 20.  I am a Little Person.  I have Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome, osteoarthritis, and an autistic spectrum disorder.  My employer has given me a desk that is short enough for me, while I use my own custom chair to keep my feet flat on the floor, my elbows at that perfect 90-degree angle, and my back against the back of the chair.  I see you with that confused look on your face, wondering why this is even worth mentioning.  Well, until I had my custom chair and my custom desk, I had never experienced the feeling of sitting at a desk with my feet flat on the floor and my work surface at the proper height.  It was so empowering, so wonderful!  And you’ve probably taken it for granted for most of your career.  My employer has also issued me an ergonomic keyboard, which I use with my own professional-model touchpad (not those nasty things that come on laptops), and voice recognition software.  My employer even allows me to telework, so that when pain or fatigue flare, I’m mere steps away from ice packs, heating pads, medications, and rest.

I have a good job, a good salary, and good insurance.  Every year I have the maximum $5,000 deducted from my pay (pre-tax) for healthcare expenses, and every year I exhaust these funds months before the deductions are finished.  I will need physical therapy and pain management care for the rest of my life.  EDS does not have a cure, and treatment is to try to keep the connective tissue from getting too much worse.  EDS is not itself a progressive condition, but it causes conditions that are, like osteoarthritis.  When I’m invited to a meeting, a movie, a picnic, an afternoon of bowling, I don’t know how I’m going to feel that day.  It could be an okay day, or it could be a horrible day; good days have become quite rare for me.

Through this all, my employer has stood up for me, kept me working, and given me a place where my perspective is invited and valued.  Some days I may feel this less than others, but I am grateful and appreciative for this opportunity.

thy kingdom come on earth

Let me just start out by saying, the United States is not the Kingdom of God.  In God’s Kingdom, all are filled with health and vitality; in the United States, we allow our sick to be stripped of their homes, to be arrested and imprisoned rather than treated, to lose the things that give them respect, esteem, and independence.  In God’s Kingdom, there is no marriage and divorce; in the United States, these exist, but are not available to all who need or want them.  In God’s Kingdom, forgiveness and love are treasured values; in the United States, we seem to most value fear, anger, and hatred.

Today, in this earthly kingdom, my body fails me.  If you’ve read this blog before, you’ll know that I have Ehlers-Danlos Syndrome, which is an inherited connective tissue disorder that has caused me recurrent injuries (sprains, strains, subluxations, dislocations) and chronic pain.  Also associated with EDS and affecting me are Chronic Fatigue Syndrome and several dysautonomiae, including vertigo, low body temperature, and Raynaud’s-like temperature sensitivities.

Also in this earthly kingdom, I work a desk job.  I’m blessed to work as a skilled professional, and I’m similarly blessed in terms of salary.  And I spend much of that on prescription medications, doctor visits, physical therapy visits, therapeutic procedures, braces, splints, and purchasing conveniences (like meals out) that reduce the incidence of injury and/or pain levels.  So yes, I spend dollars to relieve and alleviate pain, and a lot of those dollars go to meals that I’d really prefer to be able to cook for myself.

In early August, my doctor and I discussed going on disability.  Between EDS and CFS and full-time work — yes, this is full-time work at my ergonomically-optimized workstation, which is in my home — my body was exhausted.  Not exhausted like “I just mowed the lawn,” but exhausted in its true sense, meaning “used up.”  So on August 5, I did not work.  My short-term disability claim was filed (and there were shenanigans, including incompetence and good ol’-fashioned American laziness), and on September 14, it was denied.

Right now, my doctor has cleared me to work 12 hours per week.  My employer will not allow me to work more than this right now; of course not, because they don’t want to be liable for harm to my body from working more than my doctor says is safe!  So imagine your pay for a moment; now imagine about a fourth of it; now give serious condition to living on that for the next few months.  But wait!  First you need to go unpaid for a month.  THEN you can live on about a quarter of your regular pay.  For the next several months.  That, or live with your normal salary, but completely unable to enjoy any benefits of it.  Like a home-cooked meal.  Like a vacuumed carpet.  Like getting through an entire workweek without having to use any vacation or sick time for profound pain or exhaustion.  Oh yeah, and because you have so much absenteeism and because your productivity has tanked, you’re under constant fear that you’ll lose your job entirely, so you wouldn’t even be able to get any disability benefits whatsoever.

This is not the Kingdom of God.  Heck, this is one crappy kingdom for human beings!

So, yeah.  Having Ehlers-Danlos Syndrome in the United States in the 21st century has already cost me my house, in bankruptcy last year.  It has wrecked my career and made me virtually unemployable — who wants to hire someone capable only of telecommuting, with a horrible record for absenteeism and productivity?  Now I’m only wondering how long it will be until my husband and I are living in our van down by the river, literally.  And the best part?  Disability attorneys don’t even want to talk to me.  They tell me they’ll be willing to talk to me once my application for Social Security Disability has been denied, but can’t offer me advice until then.  So I’m hamstrung by being a skilled professional with a good job and good benefits.

My husband and I joked about being glad he’s working at the parish he is, because it has a great outreach ministry to a homeless shelter nearby.  We laughed about having our first cardboard box as a married couple and the fun of looking forward to finding a nice roomy refrigerator box instead of our starter home in a microwave box.  And right now, I weep.  I weep because I don’t know what else to do.  My husband and I aren’t going to qualify for any kind of assistance program until we lose most of what we have.

But hey, my monthly withdrawal to the IRS for this year’s owed taxes bounced last month.  Maybe they’ll arrest us for tax evasion, so we can have a nice comfortable home in federal prison.

Because that, my friends, is the United States version of the Kingdom of God.