To the Caregivers I’ve Known

Being cared for by others over your life should be a reverse bell curve. You start out requiring a lot of help, gradually need less and less, live decades independently, then your needs return toward life’s end.

Once upon a time, I was in lock step with this blueprint of how we insist normal life should be. I was an eight-year old who rode a bike and climbed trees, a healthy third-grader who had mastered most personal care chores. Then rheumatoid arthritis fell from the sky like a white-hot shower of napalm. In a matter of months, dressing and grooming and cutting up food became monumental tasks. From then on, I have had to depend on caregivers for many simple and highly personal tasks.

I have had many caregivers thus far in life: a few dedicated family members who have done it for free and the vast majority who have been paid for their services. Sometimes family helps out of love and other times – let’s be honest – out of moral obligation. We then assume that the ones who get paid see dollars as their goal when sometimes they also stick around for the personal connection. They develop something of an emotional investment in the client.

Much has been studied and written about the burdens of caregiving for disabled offspring or how the sandwich generation are ground down to a nub by their obligations towards both kids and elders. All of it is valid and worthy of discussion. But what about the recipients of care, especially us adults who are supposed to be able to wash our own hair and pare our own nails?

When I was a teenager, I felt especially self-conscious. I was less concerned about needing help than I was sensitive to my personal appearance. I passively accepted my gimpdom but felt embarrassed to get naked in front of strangers.

When I started college at 17, I hired my first personal care attendant. I was anxious about the arrangement. Could I depend on her to get me up and ready so I wouldn’t miss my van ride to class? We quickly built a relationship of trust. I soon felt a bond with Lexie, the punk poetess who would be my caregiver and roll model throughout my four years of undergrad.

One time, Lexie was stricken with a devastating flu and bout of laryngitis. She was much too sick to work, so I temporarily hired an attendant already employed by another girl in my dorm. The sub was pleasant and punctual and resembled Dick Butkus in bibbed overalls. She’d never heard of Captain Sensible nor seen I Am Curious (Yellow.) I soon developed an irrational dislike for the poor woman though I tried not to show it. I deeply missed Lexie and fretted about her health.

Finally, after two weeks, my door swung open one morning.

“Dale Bozzio has a camel toe!” cried Lexie.

I thanked God Lexie – Sally Bowles to my Heidi of the Swiss Alps -- had been returned to me in fine fettle.

Lexie was always dependable, but other paid caregivers were not. As I got older, I realized I would much rather have an inexperienced attendant who is reliable, personable and shows initiative than an experienced one who is always late or I can’t bond with.

Family caregivers can be wonderful because of the memories and private jokes you share. If they love and accept you, all the better. But I have always felt a greater indebtedness to family members than those I pay. That indebtedness can eat at your heart.

A loved one can hug me and tell me I’m not a burden, but the truth is, I sometimes feel like one. I love the concept of respite care but I also feel a sense of shame that it’s needed in the first place. Truth is, the simple tasks of my daily existence can weigh down those dear to me, can pull them down into depression and exhaustion. That can be very tough to live with.

Perhaps we could take a page from the book of countries who are – gasp! – a tad more democratic socialist. Places where tax dollars fund basic attendant care for folks with disabilities so the need for respite care never arises.

Once we accept disability is often a natural and expected part of the human condition, then maybe we can forge a society that cares for all.

YOUR SECRET IS NOT SAFE WITH ME

Oh, yeah…you know you want to.

You burn to click on that link and watch the video clip with its provocative title. You want it to pull you in, to take your focus off the world around you for a few minutes. Maybe you even keep Kleenex by the computer, just in case.

Finally, you give in to your urges and cue up the video. And there it is: a one-legged guy running a 5K. You feel warmth surging through you. The tears well up and roll down your cheeks. You grab that handy Kleenex and wipe them away.

No, I’m not talking about fetish porn. I’m talking about inspiration porn: the objectification of people with disabilities as inspirational simply because they are living their lives. Non-disabled people do this for their own benefit, as if disabled people are not people but are merely props to make the non-disabled feel good. To make them feel inspired, all warm and fuzzy.

Well, I got news for you. If you feel the urge to compliment me simply for getting out of bed each day and pulling my clothes on, stick a sock in it.

Don’t get me wrong: I enjoy getting compliments. Tell me my blue eyes are gorgeous, and I’ll blush and smile back. But if you tell me I’m fiercely independent just because I drive myself to work, you’ll get a wilting glare.

Might as well tell me I’m a credit to my kind. You know, the gimpy kind. Those handicapped, the wheelchair people who shouldn’t be expected to do more than weave potholders and soil their diapers.

Seriously, if you need people with disabilities to make you feel good about your own situation, I suggest you find a good psychotherapist.

Just leave me out of it. 

My Dirty Little Secret

I have a dirty little secret, one I’ve been keeping for 26 years. Once upon a time, I worked for a penny stock firm.

Yes, I know how it sounds. But before you stop reading and cast a pox upon my house, please hear me out.

I was a newly-minted young lawyer in search of a job in a city the spat out hordes of newly-minted lawyers every six months. My husband and I no longer qualified to live in $268 per month (utilities included) married-student housing at Ohio State. We found a modest bungalow to rent nearby, but our monthly expenses doubled. I had gone on numerous job interviews, all of which yielded exactly nothing.

They were desperate times, indeed.

I considered that maybe I wasn’t an appealing job candidate because I didn’t currently have a job. So I responded to a newspaper ad promising to build my business experience with income limited only by my own level of initiative. The company had one of those reassuring Plymouth Rock-sounding names used by banks and insurance companies.  

A few days later, I found myself sitting across the desk from a white-haired, sixty-something man who looked like a sweet older guy you might regularly see at a local diner. He was personable and charming. He explained the job was at a stock brokerage which would pay me to get my license and train me to sell their investment products. He made it sound so simple, and hired me on the spot.

I was thrilled, but immediately had to push nagging doubts to the back of my mind. If he was an experienced, reputable business man, didn’t he know asking about my marital status was a violation of federal employment laws? Also, why did he keep pronouncing the word “business” as “BIN-ness?”

I reported for work the following Monday. The brokerage offices were in an office park straight out of the movie, “Office Space.” Unremarkable buildings surrounded by landscaped berms, parking lots and zero pedestrian connectivity.

I was nervous but comforted to find out I wasn’t the only new recruit. I was assigned a desk in a row of cubicles populated by other newbies. The white-haired older gentleman was the main supervisor but rarely had contact with us. We were given our marching orders by a middle-aged guy who arrived each morning with an untied tie hanging around his neck. He gave us materials to study so we could sit for the licensure exam in about a month.

“I can do this!” I thought. “Hadn’t I studied for and passed the bar exam just six months ago?”

So I threw myself into the material. I -- who at age 25 still only had a sketchy understanding of how the stock market worked – studied and memorized as if my life depended on it. And it kind of did. My husband and I had bills to pay. The terms of my employment were that I would be paid $150 per week for four weeks. After that, the only income I would have would be whatever commissions I earned on sales I made.

During the first several weeks, I would take occasional short breaks to chat with my co-workers. We all shared some sort of quiet desperation: a thirty-something single mom who had lost her previous job, a couple young guys who dropped out of college, a guy who used to write children’s books about good health and a Chinese-American woman who had recently found Jesus.

None of us knew anything, really, about selling stocks. And we had only the foggiest notions about the type of stocks we were expected to sell. I heard someone talking about a vending company that sold machines from which you could buy freshly-made batches of French fries. (“Crisp, not greasy! Who wouldn’t buy stock in that company?”) There were other companies seeking to raise money through stock sales, and all of them seemed to have WASP-y Pilgrim names, too.

Finally, I aced the exam and got my license to sell stocks within the State of Ohio. I was psyched. “Bring it on!” I thought. Now I was given a script to follow, along with index cards containing leads: people the company had identified as being likely to purchase dubious penny stocks from complete strangers cold-calling them out of the blue. What could go wrong?

The second day after I got my license, the middle-aged manager with the untied ties came around and asked to speak to all of us “ladies.” With a sheepish grin, he told us to leave work that day at 4pm. When we asked why, he looked at his shoes and informed us that one of the guys was getting married and they had ordered a stripper to come to the office at 4:30 “and grind on the bridegroom.” He didn’t want us to feel uncomfortable.

He also politely told us to quit asking too many questions about the products and just keep making sales calls. He told us to stop mentioning Junk Bond King Michael Milken, who had recently plead guilty. If we learned too much, we might accidentally utter the phrase “junk bond” to a potential client.

About a week into my sales career, I began to suspect the leads were crap. Why did every single person I called sound angry or mentally unsound or just plain hang up on me?

During my two months at the brokerage, while I was trying to make a sale and avoid the Chinese lady Jesus freak who insisted I wasn’t saved, I interviewed for an attorney job and nailed it. I could finally move on to my chosen profession and extricate myself from one that had begun to feel like something that could earn me a prison sentence.

Two years later, I saw the movie, “Glengarry Glen Ross,” and simultaneously laughed and cried.

Five years later, I took a job with the state government agency that investigated allegations of securities fraud. I learned that my agency was investigating -- you guessed it -- my former employer, the Plymouth Rock gang. The older guy who hired me and struggled to pronounce the word “business” copped a plea, as did others.

I wasn’t involved in the investigation, but tearfully told my new boss, the chief legal counsel, about my checkered past at the brokerage. But since I’d never made a stock sale, I had nothing to worry about.

Sometimes underachievement pays off after all.