Grace in Motion

Amy wasn't feeling well. She'd been sick off and on for weeks, the glands on one side of her neck were swollen, and she had almost daily severe headaches, not to mention that her inhaler (for asthma) was empty and she couldn't afford the appointment to see the doctor for a new prescription, let alone buy the inhaler afterwards.

Amy is our "almost daughter." Warren and I took her in for ten days three years ago when she fled her dad's house during an altercation, and then I tutored her several times a week for the remainder of the year - her senior year - to help her graduate on time (yes, she did). Amy, who will be 21 this spring, has been a part of our lives ever since and she will call me when life gets too overwhelming. So when she called me Monday night, half crying and worrying aloud about her medical problems, I told her she needed to get to Grace Medical Clinic at Andrews House on Wednesday evening.

A long silence ensued. "Are you going to be there?" Amy knows I work at the Andrews House Legal Clinic, so hoped I worked the medical clinic as well. When I told her no, she hemmed and hawed long enough that I said, gently, "come pick me up and I will go with you."

Grace Medical Clinic, which is held weekly, is in its third year of existence. It is entirely volunteer-driven and free to all. I have known about it since its inception, I have heard glowing descriptions of the work the volunteers do, but accompanying Amy was my first opportunity to see it in action.

What a gift.

Despite arriving some 20 minutes before the official check-in time, Amy and I walked into an already full waiting room. She was #13 on the sign-in list. The woman who held the number one slot had been waiting since 2:00.

Ages ranged from toddlers to seniors. Some were Latino; many were white. There was a family in chairs against one wall: father, mother, and three children, the oldest of whom might have been five. At another chair, a toddler played happily on the floor at his mother's feet, trying to stack nesting cups and making the bright loud sounds of a contented baby.

One patient, an older man, was explaining to another client that he was diabetic and experiencing neuropathy in his feet. "When it gets so far up the leg, they'll take my leg off," he added in a matter of fact tone. There was a couple, perhaps in their sixties, cuddled up on the couch. He had a heavily wrapped arm; she held her stomach.

The set-up crew arrived shortly after Amy and I found seats, and I watched the proceedings with fascination. It was what I always imagined watching a MASH unit set up would be. Within 20 minutes, the dining room was divided into a series of curtained examining rooms. Across the hall, others set up prayer rooms. (Grace Medical Clinic is sponsored by an area church, so offers prayer and counseling to any patients who may want it.) Although I could not see it, further down the hall, yet another team was creating an on-site pharmacy.

Amy was nervous. Amy was tense. Amy was anxious about how long it would take. Amy kept thanking me for being there with her. Amy kept talking.

The evening slowed down. Some volunteers brought in food for the patients, knowing that many of them came straight from work, or otherwise had not eaten. Apples, sloppy Joes, pretzels, bottled water - enough to take the edge off of someone's hunger. There was an announcement that the clinic was short one doctor and one nurse tonight, so they could would not see more than 15 patients that night. Little children - and there were lots of them - grew tired and cranky, then grew contented again. People talked in quiet voices. Children flowed from the waiting room to the makeshift play area (also staffed by volunteers) and then back again to their parents.

Amy got called for a weigh-in and triage. She came back with an indecipherable look on her face. When I asked about it, she replied, slowly, "She was really nice. I didn't know girls my age could treat another girl that nicely."

We waited longer. Patients were called into the examining rooms. Amy ate an apple; I ate some pretzels. We both giggled at the little girl who took a sloppy Joe, then returned it a few minutes later, all the edges nibbled off, and carefully placed it back on top of the pile of sandwiches.

Amy was finally called into the examining room. With the seat beside me empty, Peggy, one of the volunteers, sat down and we started chatting. Peggy has worked with the clinic since its inception. She lived in Columbus, and said she never thought of Delaware as needing a clinic, since the county appears to be so affluent, but how she had quickly changed her perception.

I nodded. "We hide our poverty well," I said, explaining about my involvement with our legal clinic. "And if you're from Columbus, the first thing you see coming this direction is south county, which is where most of the money and big houses are."

We compared notes on clinic operations. I admired the hot food and told Peggy how we did baked goods at our legal clinic. She said this was the first night they had hot sandwiches. Peggy talked about the setup and teardown crews and how they rotate volunteers. I talked about our bank of attorney volunteers.

The evening wore on and more patients left. Members of the teardown crew started trickling in; many of the setup and prayer volunteers, including Peggy and her husband, started leaving.

Close to 9:00, Amy finally appeared. She sat down and said, shyly, that she was going to the prayer counseling area and asked me to go with her. Once there, Amy started crying as she talked about the stress in her life, including the loss of her beloved dog. The prayers were Amy-specific: for strength as her father faces foreclosure and the roof over her head becomes uncertain, for guidance as she looks for work, for direction, for healing her grief. Amy continued to wipe away tears.

Our last stop was at the pharmacy, where she was handed a new inhaler, medication for her infection, and replacement prescriptions. Amy just glowed.

"Thank you," she said. "Thank you."

Four hours after we walked in the door, we walked out. On the way to her car, Amy reflected on what she had experienced that night. "I thought they would be rude or make me feel bad for being poor. But they were all so wonderful and caring."

She was quiet for a moment. "I cried in the examining room too," she said. "I never cry. But the nurse who saw me first was so nice and saw me as a person."

For many, a trip to Grace Medical Clinic is a life saving experience. For Amy, it might be a life changing experience. When you grow up in what can at best be called "hard circumstances," and where you are now living life at an even lower level because of the Great Recession, you learn early and quickly that life is hard and people often look right through you because of your poverty. Amy is losing the roof over her head. Her future is so uncertain right now. So she came to Grace Medical Clinic with all her defenses and walls in place, expecting to be treated poorly at worst and brusquely at best. Amy walked out saying "they were so nice, they really cared." She was stunned that the Grace Clinic volunteers treated someone "like her" - someone in need of a helping hand - with dignity and kindness.

The Grace Medical Clinic is a gift in the midst of our community. The volunteers, medical and lay people alike, are passionate about this mission. Their faith shines through in their actions, their smiles, and their gentleness. They are the embodiment of Kahlil Gibran's saying that "work is love made visible."

Our communities are full of patients, clients, customers, and others who gather the courage to step through a door and ask for help. They are the Amys of the world, not sure what reception they will receive when they ask. I am always in awe of the volunteers who open those doors and serve - those who dispense prayers or medications, those who give legal advice, those who cook and serve meals, those who put their beliefs into action - and count myself blessed beyond words to have the chance to work alongside them. They are ordinary people who have stepped forward in extraordinary ways. They are ordinary people who have looked around, said "this (lack of medical care, lack of legal help, hunger, homelessness) is wrong," and then taken action.

Wednesday night I got to witness a miracle firsthand. I saw Grace in motion.

*Photo courtesy of Andrews House, Delaware, Ohio.

Hard Times

Times are tight all over. My older son Ben is looking for work again, having been recently laid off. I know of at least two high school classmates of his who are working three jobs each. My older brother just broke his leg in a freak accident and is out of commission (and work) for at least six to eight weeks. Someone else I know has a home in foreclosure, a chronic illness, and a soon-to-be ex who just left the country, leaving her and their nine year old son, who has his own medical problems, without insurance, without money, without support, without anything.

That last individual recently asked me to please set aside any "extra garden bounty" I might have as we would be seeing each other later in the week. So yesterday before meeting up with her, I picked some tomatoes from our wreck of a garden and even found a couple of red, ripe King of the North sweet peppers to add to the sack. There was a zucchini in the refrigerator - the last from my dad's garden - that my hand hovered over. We love zucchini. Then the bakery scene from A Little Princess, during which a hungry Sarah Crewe divides six hot rolls with a beggar child, came to mind:

Sarah took out three more buns and put them down…

"She is hungrier than I am," she said to herself. "She's starving." But her hand trembled when she put down the fourth bun. "I'm not starving," she said - and she put down the fifth.

The zucchini went into the bag.

My overwhelming social impression as we drove to and from Montana last month? Hard times. Call it what you want - a recession, the Great Recession, or (what I believe along with columnist Paul Krugman) possibly the Third Depression - the signs are evident everywhere. Empty houses, starting on our street and lining the route all the way to Helena and back. Empty storefronts to go with those empty houses. Signs for food pantries, even in towns of 150 or 200.

Increasingly, we are all impoverished. If not literally, then figuratively by the spreading poverty around us. Our piggybanks are worn and chipped. So are our spirits at times.

In the middle of opening wedding presents, Alise suddenly said, anguished, "we can't accept this gift from [a family member]. They can't afford to give us this." She bent her head down, it hurt so much. Her father, a wise and compassionate man, told her to appreciate the love behind the gift and to accept and use it in that spirit. Several times that morning, as other gifts were opened, he or Alise's mother quietly mentioned how certain family members had clearly dug deep into their pockets to gift the newlyweds.

I suspect the newlyweds, on their own shoestring budget, will never forget the love and hope woven into their presents.

Warren and I feel the pinch at times. We each have modest incomes. After he pays support from his and a monthly payment for back taxes comes out of mine, they are even more modest. I'm helping Sam tackle college in my own limited way (his father and Financial Aid are doing the bulk of it). There are always medical bills, and overdue (and uninsured) labs and an oncology appointment loom for me in October. Warren's truck just gave up the ghost after many, many, many, many miles, so there is a replacement in our future.

Warren recently said, as we drove home on a day that had already been too long and during which we had both been stretched too thin, that he wished things would ease up a bit for us. Me too. I worked on the household bills this morning - my income is still recovering from August - and I winced when I summed up the total and then looked at my checkbook. At least I have income with which to pay those bills. I am grateful for that, because there were times during my illness when I didn't have the money or means to pay. There are many around me who do not now.

Many months ago, when we were just starting our relationship, Warren wrote: "you probably aren't going to get Europe, diamonds, many expensive meals or lots of shoes." As I told Warren in response, I never cared for diamonds or shoes, and I can make my own great meals fairly inexpensively. I've seen Europe, albeit many years ago, and there are places in this country I want to see before ever returning. Fortunately, we each learned, separately and a long time ago, to make the most of what we have, including financially, and in that regard, as in so many other ways, we are very well suited.

When it comes to the hard times our nation, my community, and my friends and family are going through, my focus is small and local. I can't fix the Third Depression; I can only hope that thoughtful analysts like Krugman point the way for our otherwise entrenched and polarized politicians.

But I continue to chip away at the grassroots level, one zucchini at a time.

Tiptoeing Through the Medical Bills

Today's mail held two medical bills, the continuing fallout from July's horrific oncology visit with Dr. Bully. After a long meditative moment spent pressing my forehead against a handily nearby doorframe, I picked up the phone to talk with two different billing reps and a financial assistance counselor at Ohio Health. In each case, the folks I dealt with today were far better listeners and far more pleasant than Dr. Bully had been back during our disastrous blind date.

For the record, Dr. Bully's arrogance and refusal to listen to the patient, i.e., me, cost me over $1000 after a hefty discount by the hospital. Had he listened, the bill would have been only a little over $400.

Another way of doing that math is had Dr. Bully not been so determined to shatter my self-confidence, I would have had enough presence of mind to cancel the unnecessary tests and my bills would have come out to only a little over $400. My shortcoming was falling apart when he bullied me throughout the entire appointment, thus costing myself over $1000.

I had coffee with a friend yesterday and we talked briefly about my situation - both my cancer and my lack of insurance. She said, both bluntly and warmly, "I can't imagine what you must go through to deal with cancer and the medical bills."

I appreciated her words tremendously, because often I can't imagine what I go through.

Money and medical care have been on my mind a lot lately. I don't like owing bills. I don't make lots of money either, so I have to pay them off in increments. Recently I have read in several different sources that America is the only industrialized nation where citizens routinely go bankrupt from their medical bills or die unnecessarily from not receiving medical treatment because they cannot afford it.

I've already done the former in recent years. I'm not looking forward to the latter. As it is, I have cut my oncology supervision to the bare bones minimum short of suspending it all together. On a day like today, when my mailbox is abloom with medical bills, I nonetheless wonder whether we can shave that supervision down even a little bit more.

I was supposed to see my oncologist in late October. I rescheduled that appointment to next week, but not because of concern over money. No, I am pleased to the point of smugness to report I rescheduled as a one-woman stand against the medical establishment.

The day before my late October appointment, I got a call confirming my appointment with…Dr. Bully. I almost dropped the phone. I thought I had heard wrong and so asked, "who?" "Dr. Bully." My regular oncologist would not be there and Dr. B. was again filling in for him.

Without even missing a beat, I said, "Oh, no, I won't see him. I refuse to see him. I had a terrible appointment with him and he makes me cry."

The poor woman on the other end of the line quietly said "Oh dear, I'm sorry. Would you like to reschedule?"

That was a no-brainer. I figured I could live with temporary uncertainty over my test results better than a bruised psyche.

Until today, I had shared this story with only four people. All four, starting with Warren, were heartily supportive of my decision. Margo emailed me: Good for you! Exactly the right thing, and I'm glad you didn't decide to straighten your shoulders and be a quote cooperative girl unquote. Many times the thing to do is to not be a cooperative girl.

I see my oncologist next Tuesday. I will be a quote cooperative girl unquote (thank you for that great phrase, Margo!) with Tim because I trust him. He knows my bone marrow, my pocketbook, and, most importantly, my character and my attitude. To top it off, he is an excellent listener. We will talk about my numbers, about what if any options we need to examine within my financial constraints, and about how long until I check in again with him. He will do so without threats, or badgering, or humiliation.

Having a thoughtful and compassionate doctor does not pay my medical bills. But it does allow me to come out of my appointment with my mind and my spirit intact, so that I may better spend my energy taking care of myself and my responsibilities.

I don't know where the national debate over health care will come out. I have stopped following it closely because it is too personal and too upsetting. Instead, I continue to do what so many of us out there do: stay as healthy as possible in as many ways as possible. I also regularly admonish my bone marrow to behave, although I have learned it doesn't take orders well.

And I continue to savor and celebrate each day and the myriad of small moments of great reward that fill my lap. As I finish typing these words, I can smell the homemade chili heating up on the stove. Sam is helping Warren move timpani in a little bit and may stay for supper. Afterwards, Warren and I will share our respective days and our thoughts and our love.

My lap is full to overflowing.

Fragility

Being poor takes time because you live in such a fragile world that you spend all day worrying about and dealing with things, tangible and intangible, breaking down.

I recently attended a daylong workshop on the program "Bridges Out of Poverty," taught by Phil DeVol. He's the one who made the above observation. He went on to define poverty as "the extent to which a person does without resources." Resources include financial, emotional, intellectual, physical and other quality of life factors.

One Bridges exercise is to evaluate one's own resources in the different categories and rate them on a scale of 1-5, 5 being the best. I have not done the exercise in full, but it came to mind this morning as I dealt with some healthcare matters ("physical").

On healthcare, I give myself a 5 (quality of doctors), a 2 (my overall health, which is pretty good except for incurable cancer), and a 0 (no insurance, no coverage, no nothing), for an overall score of 2.3. Because of the 0, I spent some of my morning visiting a financial counselor at the local hospital, which is where I see my oncologist (who is one half of the 5 score, my wonderful personal physician being the other half).

I went to see the financial counselor for two reasons. First, I receive a 35% discount from the hospital because I am uninsured. If I saw a counselor, that same discount would apply to all of my oncology visits at the hospital as well. That's about a $35 savings and given that I see my oncologist next week, I needed to do that. Second, I just had a very specific blood test done for next week's appointment and I wanted to know the cost of the test. (Note: Finding out costs at a hospital is surprisingly difficult, due to the labyrinth-like nature of hospital billing systems, which have been permanently warped courtesy of the insurance industry. We never did find that figure.)

So out I went, spent about twenty minutes with a harried but genuinely warm counselor, filled out some paperwork, and came home with more papers to retrieve and get back to her as soon as possible.

I need to get them back quickly not merely for my own benefit, but because it turns out that our local hospital, which was consumed several years ago by a BIG Columbus-based system, is closing its financial counseling office at the end of this month. Everything related to financial assistance will now flow through one central portal somewhere else.

The counselor made it clear, with a tone in her voice I could not quite decipher, that Corporate was calling the shots on everything. I would have to fill out financial aid papers, involving income declarations and proof of income, for the new system to evaluate my status.

Just hearing that brought me to tears. Admittedly, I was already on edge. Financial dealings having to do with my healthcare are touchy topics to begin with. Healthcare is my fragile world.

Being faced with paperwork was more than I wanted to deal with this morning. The counselor knew I was stressed. She probably talks to stressed individuals all the time. After all, we live in a country where we have historically chosen not to care whether medical care is available and affordable for everyone. (Thank you, President Obama, for saying that is so wrong.) In the midst of this Great Recession, my guess is that her cubicle is full of financial woes.

She all the same took the time to sit down with me, fill out the new paperwork, then list what additional proof Corporate would need.

I asked the counselor twice whether the 35% discount applied no matter what my income was. As sweet as it would be to get a larger discount, 35% makes a huge difference and I needed to hear, apparently more than once, that it applied to any uninsured patient. As it is, I can only afford to have some lab work done and see my oncologist once a quarter, which is shaving my healthcare needs very closely for the cancer I have. (I don't make huge sums of money, folks.) My repeated question is an indication of the fragility of my medical resources: tell me the discount I have will not be affected, because I am really, really counting on that resource to continue to exist.

I wonder if Corporate has considered the effect of eliminating the local office. People in hospitals tend to be people with lots of stress to begin with, regardless of their income levels. How to pay the hospital bills is only one of those stresses. People with chronic illnesses, like an incurable cancer, are constantly dealing with a fixed level of stress because they know that "chronic" means "always."

My stress level rises steeply when I have an oncology appointment approaching. If I had had to have the same discussion over the phone that I had today in person, I would have hung up and cried, then eaten all the rhubarb bread left over from last night's Legal Clinic. Instead, thanks to Susan the counselor, it took only three pieces to calm me down.

I will probably spend 45 minutes or longer gathering the paperwork that Corporate needs to determine if I qualify for more than the standard 35% discount. I will deliver it in person locally rather than ship it off into some unknown void, which is what awaits me after July 31.

Next week I see my oncologist and get my test results. I will try not to worry too much between now and then. The numbers are what they are and we will deal with it when I see Tim. I will also try not to worry too much about the cost of the test that was done yesterday. We need those numbers; I needed the blood test.

One thing I won't worry about is the financial paperwork that took up this morning. Ultimately I will get a determination as to whether I qualify for more than a 35% discount, but I know that in no case do I get less than a 35% discount.

What I don't know is what happens to the local financial aid staff when their office is closed at the end of next week. Has Corporate found places for them in the new department or is that function being outsourced? Has Corporate found other positions at our local hospital so they can continue to work in this community?

Or has Corporate given them a pink slip and shoved them into a suddenly fragile world?