Life As a Personal Aide: Have a Nice Day

With all the angels as witnesses, I swear...

I've dropped more stuff in the past six weeks
than I have in the past six years.*

* The scene earlier today.

Life As a Personal Aide: Transitions

Just when I think yet another stupid comment could not possibly come our way, yet another one does. Over the past 6+ years, Ruth and I have made lots of lemonade out of these lemons. We've worked up a number of dark comedy routines about how people view our relationship. One of my favorites involves me whimpering:

"Why can't I be the inspiration and you be the saint?"

I feel compelled to mention this because my impending move to Baltimore seems to be generating an inordinate number of insensitive remarks, although it would be difficult for me to quantify an "inordinate number" given how many routinely come our way.

Coming my way are comments like, "What are you going to do about Ruth?" ─ as if Ruth wasn't a smart, resourceful, independent woman despite her physical inability to make cut up food, scoop kitty litter, and turn pages.

Coming Ruth's way are comments like, "What are you going to do without Meredith?" ─ as if I wasn't entitled to have a separate life despite my tendency to become fiercely loyal to friends. Tonight I found out someone actually lobbed this at Ruth, "Did you finally wear Meredith out?"

No, Ruth didn't finally wear me out. If anything, it would be the other way around because over the years, Ruth has become one of my most dear and trusted friends. I've come to rely on her compassion, faith, wisdom and good humor as much, if not more than she relies on my mobility and dexterity.

What wears me out is the failure of others to recognize: 1) how our relationship has become more nuanced over time; and 2) how challenging this transition might be for both of us. Fortunately, I was able to use this latest inanity to launch into another one of my favorite riffs, resulting in this back channel exchange with Ruth via Twitter:

"Have I mentioned lately how much I hate everyone...except you?"

"Actually...not for about ten days."

Life As a Personal Aide: Bigger Food

Reviewing my posts about being a personal aide, I'm surprised food hasn't appeared as a topic more often. Food is an ongoing challenge in our world.

Our world = the one Ruth and I share. Food = buying it, preparing it, serving it, eating it, and cleaning up after it.

Over the years, we've tried every available option. Meals on Wheels: great to have food delivered, except I had to toss most of it out for various good reasons. Take-out: great to have food delivered, except it still has to be cut up. Personal chef: with what money?

Mostly, we rely on frozen microwaveable dinners, which are convenient, relatively inexpensive, and surprisingly tasty. One tragic flaw: packaging has to be opened by someone. If I'm not around, Ruth has choices: 1) go hungry; 2) risk laceration; or 3) bribe a passerby. Yep, Ruth has paid as much as $20 to get someone to open a can of soup, unwrap a slice of cheese, or cut into plastic containers of cold cuts. Suburban pedestrians and joggers don't like to be interrupted.

Tempted as I am, I'm not going to take this opportunity to rant about how awful people can be. I'm trying to give up such rants for Lent. Instead, I'm going to share this slice of life as a personal aide: yesterday, Ruth opened a frozen dinner without ending up in the ER.

"I used that accessibility thing that doesn't really work, but I was able to get my knuckle into an opening."

Took me a while to realize she was talking about the Boston Market Meatloaf dinner packaging, possibly because I busy trying to open a vacuum sealed package of Trader Joe's Punjab Eggplant. Turns out Ruth's latest exercise in independent living took 2.5 hours. She had to start and stop because of pain.

"I could open some packages in advance, you know."
I seriously doubt freezer burn happens within 36 hours, but I could be wrong. Anyway, Ruth has a solution.

"I think they just need to make the food bigger."

Truly, I never cease to marvel at her eternal optimism and ponder this as I cut up apples for snacks.

"Could you slice those smaller?"

Life As a Personal Aide: Job Security Again

Was she trying, yet again, to tell me something? Last December, I worried about my job security as Ruth's personal aide because she posted something on her blog about robots. Turned out I needn't have worried because my ability to make extraordinary sandwiches is. . . extraordinary.

Not only have I come up with great combos over the past six years, but I'm able to make extraordinary ADA-compliant sandwiches without having been taught how by the State of New Jersey. I've been very proud of my sandwich competency. Maybe too proud? Is this what Ruth was trying to convey this year?

"[Anonymous] brought over tuna sandwiches."

An angel winged her way into Ruth's life after my public meltdown about our desperate need for back up help.

"Her tuna sandwiches were really great."

"Oh really? Better than mine?"

I hate myself for asking.

"Hers had celery."

Being a personal aide can be so extraordinarily humbling at times.

Life As a Personal Aide: Just Shoot Me (H1N1)

Along with diagnosing and maybe treating her pneumonia in June, the pulmonologist delivered cheery news about the probable consequences of Ruth getting the H1N1 flu virus. While he didn't exactly say, "you'll be a dead quad," that was the information conveyed.

Since she's allergic to eggs, Ruth doesn't ever get flu shots which makes for interesting adventures during flu season. I, however, am not allergic to eggs; medical "issues" of my own compel me to get an annual flu shot.

As everyone knows, the supply of the regular might-not-kill-you-but-will-make-you-feel-like-crap flu vaccine is extremely limited this year. By the grace of someone/something (St. Luke? St. Jude?), I managed to receive the next-to-last injection at my church, paid for by a kind parishioner because I had no cash with me.

I was fretting about how I might score an H1N1 shot when I remembered that I am, among other things, a health care worker. Ruth, who excels at everything Internet, managed to find a post about H1N1 flu and the disability community on the AAPD (American Association of People with Disabilities) blog, Justice for All.

Back in August, reps from the Centers for Disease Control and the Department of Health and Human Services discussed how "the direct care workforce needs to be vaccinated to ensure continuity of care or personal assistant or attendant services for people with disabilities." Good to know that the life sustaining and enhancing nature of PA-hood is recognized at the federal level.

On the off-chance this awareness hasn't filtered downstream to the local level, I plan to show up at Monday's H1N1 clinic with a printout of that blog post. I'll also bring a copy of my pay stub from the agency that pays me a whopping huge $9.25/hour to provide care for someone who has the unmitigated gall to continue working instead of going on the public dole.

Life As a Personal Aide: The Back Up Disaster(s)

If we were exhausted back in May, we're even more so now. Once again, by "we," I mean Ruth and I. The search for back up help isn't going well at all.

Wanting to spare me the drain, Ruth has personally interviewed nearly 40 applicants by phone. Her tried and true screening technique includes asking if they're willing to do anything she actually needs. Generally, they are not and it's game over.

What kind of things? Body, mind, and spirit breaking stuff. . . like making a sandwich and then cutting it in eighths so Ruth doesn't choke to death. You might be surprised by how much of an issue this and similar tasks quickly become; I no longer am. And oh dear God, how I wish I could be surprised by some of the crap Ruth endures.

Alas, I am no longer surprised by people who say they'll pitch in, but don't show up. Or show up, but refuse to do more than one thing per visit. Or, have the nerve to suggest Ruth try harder to become a little more self-sufficient despite that pesky spinal cord injury. Or, drop food off in containers that can't be opened and in portions that wouldn't keep a hummingbird alive. Or who bag up garbage, but won't haul trash cans to the curb. This is the short list of what no longer surprises me.

Last month, when I was out of town, someone showed up as promised. Short-lived surprise. That someone smoked when asked not to and refused to open windows to vent out cleaning chemical odors. Now, four weeks later, Ruth is almost over the ensuing pneumonia. The pulmonologist hasn't had to make a house call for two weeks.

There's yet more to this story, but I'm too disgusted to write it all out. Surprised?

Life as a Personal Aide: The Back Up Challenge

We're exhausted these days and by "we," I mean Ruth and I. Being middle-aged, workaholic, over-educated, multi-taskers would be tiring enough, without adding quadriplegia (hers), fibromyalgia (mine), and a stomach virus (ours) to the mix.

As Ruth recently explained in her blog, disability is not illness. And yet, disabled people do become ill and chronically ill people may become disabled. Most people gasp with shock whenever we reveal the woeful inadequacy of our aide back-up plan. It's truly by God's amazing grace that we haven't gotten into more severe trouble these past five years.

The disgusting reality is this: good, reliable, honest, and capable help is hard to find. Actually, it's pretty near impossible. In addition to aides who swoop in, watch t.v., and eat pizza, there are those who behave more feloniously. Imagine the absolute worst and it has been inflicted by an aide on someone needing personal assistance.

My reluctance to cut back on my hours probably has something to do with having heard these stories from Ruth and others in her situation. Still, because we know it's time to start searching for back-up, that's what we're doing. Ruth is already exhausted by the prospect.

"We may have to go through a lot of aides before we find one who will work out."


I don't see this as a major problem and tell her how I plan to be fully present and involved during the screening process.

"I dibs the hospital bed. You take the wheelchair."

Life as a Personal Aide: Job Scope Creep

Entered into Evidence:

Exhibit A

Exhibit B

Life as a Personal Aide: No Monkey?

Apparently, the U.S. Department of Justice's new ADA regulations will ban all assistance animals except dogs.

Ruth and I have had a number of conversations over the years about what we both refer to as "the monkey." In the context of our lives, hers as someone with quadriplegia and mine as her aide, the monkey = assistance animal.

I was extremely keen on this and not just because of the monkey's opposable thumbs. I was charmed by the thought of little outfits, especially for Christmas and Easter. We would, of course, get a girl monkey because there was no way I was going to look at monkey...you know.

Ruth was not as keen.

"You'd have to change its diapers."

"Why would I have to change its diapers? It's an assistance monkey. It should be able to change its own damn diapers."

For the past three years, Ruth has taken every opportunity to send me YouTube clips and articles about monkeys doing bad and wrong things; filthy and disgusting things. She once sent me a training clip about monkey diapering that quashed my interest in chocolate pudding for a very long time.

In fact, I completely stopped talking about the monkey well over a year ago, which is why I felt the triumphalist tone in Ruth's recent email was unnecessary. Her subject line: there goes the monkey....

Life as a Personal Aide: Job Security

Was she trying to tell me something? The other day Ruth posted something about viability and this morning a post about "A Fetching Robot."

Yes, even a personal aide worries about job security, especially one who also writes for a so-called living in this tanking...tanking...tanked economy. So instead of making (more) stuff up, I called to ask. Turns out my job is safe.

"It can't make a sandwich."

What a relief. I happen to make extraordinary sandwiches.

"The technology is still ten years off."

Whew again. I imagine we'll be sick of sandwiches in a decade. Until then, the Fetching Robot is s.o.l. and the Kvetching Aide still has a job.

Life as a Personal Aide: Liturgical Version

Being a personal aide to someone with quadriplegia is a blessing. Being a personal aide to one who is also a disabilities rights activist is a kick in the butt. I know, I know...I should be grateful that I can stand up to get my butt kicked. Ruth, after all, cannot.

The latest kick in my able-bodied butt has to do with realizing how tough it can be for people with disabilities to receive Communion. While it's fine with me if anyone in a wheelchair or on crutches wants to come up the aisle, I've noticed how it's clearly not fine for others.

And so whenever I have the privilege of distributing the Eucharist, I walk forward to meet people with disabilities. I do not expect them to roll or hobble all the way up to me. I'll also serve seated people with disabilities first, kneeling to make eye contact, and taking our sweet Jesus time in the process. I do this not to get them "handled" or "out of the way" but to honor the courage and strength it took for them to get there at all.

Guess what? Religious organizations are not required to comply with the Americans with Disabilities Act (ADA). Our worship and religious education spaces -- and the bathrooms that go with them -- do not have to be physically accessible. Our churches, synagogues, and mosques are under no legal obligation to provide American Sign Language translation or braille worship aids. If any of these accommodations are made, it's because someone took the moral high ground and then scraped together the funding to make accessibility possible.

For the past few years, transportation issues have prevented Ruth from attending and participating in the Mass. Maybe that'll change now that she has the van. Maybe not. She's understandably tired of the eye rolling, dramatic sighs, and sotto voce muttering about being in the way that frequently accompanies her appearance in the power chair.

I'm not sure taking the manual chair is a solution, although God knows I'd welcome the opportunity to mutter "repent" and "get out of the way" while navigating it up the nave with her in it. Might be a great way to kick off the new liturgical year.

Life as a Personal Aide: On a Roll

Ruth's accessible van was delivered yesterday from a dealer in Georgia who specializes in these things. Her blog post about it is up.

So what if the van arrived four days after we piled Ruth, her manual wheelchair, and all the stuff she needs to be a properly-hydrated kick-butt attorney into my inaccessible car. The van is here! Not that I've seen it. I'm still physically recuperating from Monday's adventure via the acupuncture, napping, Diet Coke, and pretzels cure.

And as I'm starting to perk up, I'm realizing how dramatically this accessible van will enhance her quality of life. Mine too, because now Ruth will be able to follow through on her annual holiday promise to me.

No more excuses! This Advent, she can drive while I aim the camera to capture images of ADA parking lot violations at shopping malls. This is going to be our best holiday season ever.

Life as a Personal Aide: Out & About

Here's what happens when the personal aide and the person she's aiding are bleary with overwork and nauseated with exhaustion: they get giddy.

We get giddy. We are giddy.

I'd say we're slap happy except Ruth doesn't have either the energy or dexterity to slap anyone and I've promised her I won't. On Monday. When I'll want to slap a lot of people.

Since we cannot get Ruth's power chair to where she needs to be, she'll be using her manual chair. One problem: she can't wheel it any more without generating a lot of pain and exhaustion. This means I have to push her in it, which I really don't mind but she does for a slew of reasons that I completely understand.

What can we do about this situation other than get pissed, get over it, and talk about what I might wear?

"How about a nurse's uniform, with a cap and a cape and white shoes and stockings?"
"No."

"How about I buy an aide's uniform with a smocked top -- teddy bears if I can't find kitties.""No."
It was time for me to get creative, so I made tomorrow's lunch and then washed some dishes and then scooped Buddy's poop and then finished putting away the Peapod order and then put away laundry and then rearranged the freezer and then loosened all the caps on the bottled water and then bagged some trash.

Being a kinesthetic learner, I knew activity would generate some great ideas and indeed it did.

"How about I rent a foam cervical collar..."
"For me?"
"No, not for you. For me."
We'll be thinking about this strategy over the weekend. My next suggestion will be crutches. No, not for her. For me.

5 Days of Tweets and Still All A-Twitter

Five days into trying twitter and I'm even more smitten.

It abounds with possibilities for business, although an entire generation of sales and marketing folks may have to retire before twittering becomes standard operating procedure in that sector. But perhaps with smarties like Chris Brogan and his colleagues at CrossTech Media championing new media tools for business development, change will happen sooner rather than later. That's my hope.

Moving right along.

On Wednesday, I twittered with a group watching the presidential debate. Very handy to be a sociologist! I was able to read, analyze, and sort the flow into categories pretty quickly. Quickly? Understatement. This is a very fast medium. That experience got me thinking about how conference or meeting-based twittering would need to include training about how to get and stay focused.

What does this have to do with church and building community? I'll get to that in another post.

Here, I'll note that I installed TweetDeck to organize my tweeps into categories. Tweeps = people using twitter. I'm following 49 folks involved with new media, or church communications, or ministry. I also added to my list folks who self-identify as sociologists.

How many people are following me? By today: 20. Ruth, who started twittering within 12 hours of me, has 33 tweeps following her. "It's because I'm a gimp," she says. She thinks her disabilities rights knowledge and activism is generating a following for her micro-blogging. Her aide wants to see if it generates any hands-on assistance.

Life as a Personal Aide: Job Training?

During the five years that I've been Ruth's personal aide, I've received increasingly demanding letters to attend job training.

Since I already know how to construct a sandwich that's ADA accessible, I've ignored these invitations. Also, I just wouldn't feel right about collecting my $8.51/hr. for simply sitting around when I have (Ruth's) laundry, food prep, cleaning, paperwork, bill paying, and other stuff to do. Once, I asked a supervisor what would happen if I never went. "You'd be noted in our records as non-compliant," she said, never realizing that I'd flush with pride rather than fear.

I could teach that training. In fact, I should teach that training. More specifically, I'd like to teach about how essential it is for any personal aide to disappear self and let Self emerge. For the Christians (and Buddhists) in attendance, I'd explain that being an aide provides excellent (and abundant) opportunities to practice that "die to self" thing.

I'd explain how we're there to do what the person we're assisting needs. If we're really good at our jobs, we figure out what they need before they do. We should provide assistance seamlessly, without complaining, without making it about us and our needs.

For example, a good aide would never starting weeping on the phone about something that neither she nor the person she's assisting can apparently do anything about -- like getting reliable back-up help if the aide is sick or safe, reliable transportation to something that could, in fact, be handled by teleconferencing.

Mutual positive regard must emerge. Ruth and I have developed this over the years. We respect each other tremendously, which is why I called Ruth to apologize for this morning's mini-meltdown. Imagine my shock and dismay to hear her say, "Well, you're only human."

Life as a Personal Aide: Being Handy

Ruth says she doesn't like to bother me. As her personal aide, I don't quite follow her logic although I absolutely appreciate her consideration. It's my job to do the stuff she can't do and I've never felt exploited at any point during the past five years.

Usually when Ruth says she knows I'm very busy with other work, I'll respond with something brilliant like, "yeah...so?" Sometimes I'll sigh dramatically and chant the Kyrie. I've been known to accuse her of scabbing when, for example, she tries to open a can of something when I'm standing right there at the ready in my kitty apron.

We've recently instituted a (better) system for scheduling and organizing our time together. It's working well and I'm noticing that Ruth is becoming much more clear and direct with her requests for assistance.

I was pretty thrilled to read, "need your hands" in this morning's email; somewhat disappointed to discover that hand shadow puppetry was not on her list of things for me to do.

Accused of Cheating

She made the accusation after I had finished scooping cat poop, bagging trash, and making dinner. I had not yet gotten around to making lunch. In fact, I think I was in the mid-tuna sandwich when Ruth accused me of cheating.

What you need to understand is that Ruth is a killer attorney. (Actually, as a public defender, she's an attorney for [alleged] killers but hey, we believe in constitutional rights.) Thus, our conversations occasionally resemble an episode of "People's Court." I'm used to this and even enjoy these colloquies. Reminds me of law school, which I punted shortly after losing the struggle to understand Pennoyer v. Neff. I digress.

It's the morning after, so I don't remember what precisely led up to this:

"Do you like LinkedIn more than blogging?"

I hesitated for maybe three seconds, but in my own defense I must point that I was dealing with mayonnaise. Since we're all on diets, I needed to pay attention to the tuna situation. (All = Ruth, me, and her cat, Buddy.)

"So you do like LinkedIn more than blogging."

"I wouldn't say that."

"More than blogging, you like spending time on LinkedIn."

Note her exquisite technique.

Let the jury and readers note, I do not "like" LinkedIn more than blogging. They're totally different arenas for highly productive slacking.

I am not cheating on More Meredith Gould with Meredith Gould. There are limits to my self-absorption.

Life as a Personal Aide: Survival of the Visible

Last week, Ruth and I finally added a jaunty orange flag to the back of her power wheelchair (aka, The Beast). Amazingly, it serves to inspire motorists to at least consider stopping when she enters a crosswalk.

Alas, the jaunty orange flag doesn't seem to be fool proof, so see these flame stickers? Earlier this evening, I decorated The Beast with them. If they don't bring drivers to a screeching halt, I'm going to add more decals.

Ruth says she's okay with anything but Tweety Bird toting a rifle. I'm torn between either images of the Sacred Heart or skulls.

Life as a Personal Aide

Earlier this week -- like yesterday -- I had a conversation about home health aides with a friend who has recently entered this crazy system of so-called care.

This, in turn, prompted me to think about how I've been going about this aide thing all wrong. You do know that a huge part of my life (that I cannot imagine being without) involves assisting Ruth, aka Wheelie Catholic, right? I've written about this before.

I might start writing more about this because we have so many noteworthy adventures. For example, I recently had to explain how to get much-needed wheelchair parts more quickly. The parts, I was told by the vendor, were coming from "all the way across the country." I suggested the dealer might be commanded to use an overnight delivery service.

Okay, so maybe I'm a genius when it comes to using the phone but what about my onsite performance? After a bit of research into what other aides accomplish, I decided to discuss my key concerns with Ruth. In addition to being the Boss of Me, she has a lot more experience in these matters.

"I love the kitty apron but I think I should be wearing a uniform."

"One of those smocky things? You didn't want one."

"No, I just didn't want one with bunnies or puppies. I wanted one with cats."

"What else?"

"Well, I think I should probably be more like other aides and watch TV while you struggle to eat something in the kitchen."

"You're forgetting to demand gas money and that I order in an entire pizza for you."

"Oh, okay. Could I get anchovies with that?"

Prayed Upon

Approximately two years ago, I started telling people about another significant part of my life. For two years before that, only a few trusted friends knew I worked four jobs and that one involved providing personal assistance to someone with quadriplegia. What began as a part-time job has become a core feature of my life -- and identity. I'm still sorting through why I decided not to talk much about this until relatively recently.

With the exception of one published piece, I haven't written about it, either. For one thing, I've been busy writing about other things, but I suspect the really real reason is that I just wasn't ready. Hearing from Elizabeth has prompted me to start writing about disability issues from my perspective as a PA, and with the blessing of the person I assist.

Elizabeth is a smart cookie. She figured out I'm a PA and after reading some of my blog posts, asked that I comment on the following:

Christians tend to pester me about not praying for healing enough or they stop talking to me because my life now is so different from what it was, but say, "I'll pray for you" which sort of sounds like "see you later....like never" because I've heard it so many times. Several have gotten quite angry because I say that I believe that God's hand is doing this -- that I believe in many ways that God has prepared and strengthen me for becoming disabled. Can't say I know why! But many seem very frustrated that there are not exact answers, that I get sicker or that I am in more pain and there seems no meaning to it.

You mean "some" Christians, yes? I offer this to start: I'll pray that you meet good Christian folk who won't pester you about "not praying for healing enough." Good Lord. If you have the energy the next time this happens, please consider asking whether the person is talking about you being healed or cured. While you're at it, try asking whether they're talking about disability or illness. These are not the same, although illness may indeed lead to disability. In either event, it's possible to be healed in mind and spirit while the body is disabled -- or even terminally ill.

I write this with confidence, based on my experience providing hospice care in the past, my current role as a PA to one of the most spiritually healthy people I've ever met, as well as my own 20+ year dance with a chronic, incurable-but-not-life-threatening and sometimes debilitating physical illness.

In my own situation, a turning point came at a retreat when, during Mass, in response to reciting, "Only say the word, Lord, and I shall be healed," I heard the Holy Spirit whisper, "You already are healed, you just don't know it." That I didn't also hear, "you idiot," proves it was the H.S. My overwrought psyche would have engaged in such negative self-talk.

Your ability to see God's hand in what's happening as you become more sick and disabled is not only evidence of grace but of your own spiritual maturity. I'm not surprised that you have trouble explaining your deep knowing (e.g., God's hand). Mystery defies easy explanation.

As for interpreting, "I'll pray for you" as dismissive, you may be correct. But not always. Sometimes, saying "I'll pray for you" has about as much authenticity as asking, "How are you?" Having caught myself doing this, I vowed to write out my prayers in a journal so I could see if I had, in fact, prayed as promised. Very illuminating or, as some Christians would say, convicting!