Monday, March 28, 2016

This is the face of poverty

Dorothy Wray Semans Clark

It is inconceivable that anyone could look at this face and see anything other than exuberance, trust and hope. And yet, that would be incorrect. It is the face of poverty that as a society we have come to shut out of our minds. Instead, many have replaced it with image of  "The Welfare Queen" hawked by the late Pres. Ronald Reagan when he planted the seed that has grown into a form of genocide - wipe out the poor by denying their existence and reality - withhold food, shelter, warmth, and medical care to millions while portraying them as free-loaders and rendering them invisible.

When she was six and I was 14, Dorothy decided that she had had enough of Snow White, Uncle Remus, and Hansel and Gretel at bedtime. She wanted a whole new story so she wouldn't know the end before I finished telling the tale. 

When I look at this picture, what pops into my mind is "The three little squirrels ran 'round and 'round and then went up the tree and down the tree..." 

She was so tired from playing hard all day that she would immediately fall asleep. Good thing because I had no idea what to do with those squirrels once they were back on the ground.

That story has never been completed but her life story has come to an end.

There was a memorial service for Dorothy Wray Semans Clark on April 2. It  was the last opportunity to say goodbye before her ashes are scattered in the Colorado mountains.

The service was the final piece of the jigsaw puzzle that was her life. We know bits and pieces of other's lives, but it is not until all the pieces are sorted and put together that we really understand who they are.

I can't decide which is more correct - that she died in poverty or of poverty. I am certain that she - like all of us - wanted to depart this world  leaving something good behind. And I know that if by telling her story, others can be helped and/or enlightened, she would agree.

She grew up in a middle class family doing all the things that little girls do - gymnastics, dance classes, piano class - just one class because she hated it. She loved roller skating and often won competitions even though we kidded her about being so clumsy.

She wasn't an excellent student but was exceptionally outgoing so adapted well to each new school. Things at home were often chaotic so changing schools and dealing with family drama were the rule not the exception.

As she drifted into her teen years, she wasn't really connected to the realities around her. 

She spent a lot of money - primarily my Dad's. She would "borrow" a few hundred or max out one of his credit cards. It was a constant source of friction between her and Mom.

But they did have a common interest - daytime soap operas! Mom would tape them so that they could watch them together when Dorothy wasn't working. They had their favorite characters and there were ones they hoped would get killed off. 

She worked most of her life and paid taxes: property taxes on her homes, personal property taxes on her vehicles, sales taxes and income tax. Although most of the taxes were used to support projects that she didn't benefit from, she never complained about it. She was in a position to pay taxes and for that, she was grateful.

Health wise, things began unraveling for her when she reached her 30s. The first problem surfaced when she became jaundiced and didn't feel well. She was diagnosed with a rare syndrome found in women who have given birth. While pregnant, the body clots easier so that women don't bleed to death during delivery. In very rare cases, a clot forms in the artery leading to the liver and doesn't dissolve. It blocks off the blood flow and the liver begins dying. The fortunate part for her was that the doctor she was referred to had been trained in an experimental treatment that might prolong her life another five years by placing a stint in the artery and replacing it if the clot returned. She lived well beyond the prediction but only with regular check ups and new stints. Her liver continued to die and, if she had lived, a transplant would have been needed sooner rather than later.

She never whined about liver problems and was grateful that Dr. Mitchell Shiffman continued to give her excellent care for more than two decades that allowed her to continue to work until other illnesses took over.

She loved her job as a bus driver for the Virginia Beach schools and enjoyed the kids, many of whom were disabled.

One day, Mom received a call saying that Dorothy had started shaking and crying after she had let the last child off. She had been taken to the hospital where she was diagnosed as being bipolar which explained some of her behaviors - drastic mood swings, spending money without thought. She received psychiatric treatment for a short time and then was switched to medications which controlled her symptoms and allowed her to return to bus driving. She didn't complain and was grateful that there was something that helped and that she could continue to enjoy the children.

When she went on Medicare, she had to pay for the mental health drugs out of her almost empty pocket because Medicare doesn't cover mental health.

A couple of years later, Dorothy began dragging one foot instead of taking proper steps. This time the diagnosis was devastating.

She had cerebral palsy which explained the life-long clumsiness. The doctor said that now it was progressing faster and it would not get better. And, again, she didn't complain although it was becoming painful but, she was able to continue working and for that, she was grateful.

And then there was diabetes. The doctor told her that if she was careful, it could be controlled with diet. And again, she didn't moan "why me" and was grateful that she wouldn't have to take medications.

The cerebral palsy eventually made it unsafe for her to drive the bus. One leg was much weaker than the other so it was difficult to get on to and off the bus. 

She qualified for Social Security Disability and received a small retirement check and that became the family's only income. When she married her husband, he too, was on disability and they didn't know that by marrying, one would have to give up their benefits. This left the couple and her son from a former marriage living on less than $14,000 a year so they moved in with Dad.

(Later, after they moved to North Carolina, they were excited about the expansion of Medicaid for those who didn't qualify for other parts of the Affordable Care Act. It would have allowed her husband Kevin to get the medical treatment he needed for his untreated illnesses. But the state refused to accept the expansion and Kevin became one of almost a half-million people in the state left without resources to seek medical help.)

Her leg grew weaker and she tripped on the walkway and broke her ankle. Later, another fall would break the other one. And still another fractured a vertebrae. But, she didn't complain, she was grateful that she could still use laughter to get her through the progressively worse days.

She tried to stay active and avoid using a cane or walker but that came at a price. Walking through a store parking lot, she lost her balance and fell face down on a concrete barrier placed between parking rows. Miraculously, she didn't break any bones in her face but did knock out most of her teeth and those left were broken off near the gum. 

Shortly after that, our father died. The family couldn't afford the house payment so were forced to move. Dad left her a small insurance policy and she wanted to use it to buy a home so they wouldn't have to pay rent. She also wanted to leave Virginia Beach so I searched for foreclosures in North Carolina that might be within her reach.

We found one and before making an offer, had a contractor check out the condition because it was an old home and had been empty for a couple of years. The builder said that the house was structurally sound and needed just cosmetic work so she bought it.
The contractor had not looked close enough. The roof had to be replaced as did a ceiling in an upstairs bedroom. There were some electrical and plumbing issues and the inside needed paint. The price tag was higher than we expected but still managed to get the work done.

We were on a least until the water was turned on. The man from the water company called to tell me that when he went inside to wash his hands that his feet got wet. Someone had stolen all the copper out of the house so the plumber was called back.

Next came the HVAC system which used propane. The gas man filled the tank and tried to start the unit up, but the copper line from the tank to the heating/cooling system also was gone. After that was replaced, we found that the unit was completely unusable and would have to be replaced. 

There was no more money to sink into the house so I looked for programs that helped to correct such problems for those living below poverty level. There was an organization that had just received a very large amount of federal funding through the federal stimulus program and it was earmarked for weatherization and heating programs for those living on income below the poverty level. 

Dorothy quickly enrolled and then waited...and waited...and waited throughout an entire winter. Every week, there was another reason why the work hadn't started. Finally, a worker at the agency admitted that the holdup was because they weren't told how to administer the program so didn't know how to spend the funds. 

To try to get them through the winter with no central heat, I bought space heaters, blankets, warm clothing, thermal curtains, plastic to put over windows, fleece sheets - anything that I could think of to make the house bearable. When the temperatures went really low, they put the space heaters in their bedrooms where they could contain the heat and stayed in those rooms.

Finally, with the help of Sen. Marc Basnight, the work was done and they had heat...until the propane ran out. Prices were high and it was more than $600 for enough to last 3-4 weeks depending on the temperatures. That was more than half their monthly income so there was no way that they could pay for it. I paid for it and looked for a program that would help. 

The Low Income Energy Assistance Program, LIEAP, is available for one fill-up or utility bill per year. Social Services can pay once during the year but - at least according to her Social Services worker - only after the temperatures have dipped below 32 degrees two days in a row. If the temperatures hovered in the mid-30s or hit 32 but then went back up to 34, then too bad. But using the two programs provided about six to eight weeks of warmth in the winter and for that, she was grateful.

I helped when I could as did Kevin's brothers. Someone loaned them money for a partial fill-up and they were repaying it $25 per month but there were still times with no heat for a couple of weeks while we figured out how to solve the problem.

Her physical condition continued to deteriorate and she frequently fell so I found some used rugs to put on the hardwood floors in hopes that it could save her some pain. 

Medicare doesn't cover dental care so I continued to search for a program to get the broken teeth removed and, hopefully, dentures. I couldn't find anything and was thrilled when Missions of Mercy was coming to Dare County. But the excitement was short-lived. I found that patients seeking help started lining up the night before and stayed in the cold night air for several hours trying to make sure that they could be seen. 

She wasn't up to that. I continued searching and asked a friend if he knew of any programs that might assist. He couldn't believe that there was nothing out there so searched himself. He called the next day and admitted that he, too, ran into a brick wall. But, he said, he and another friend had a check waiting for me to use to get some of the work done. 

When I told Dorothy, she cried, not because of the amount of the check, but because someone - someone she had never met - cared enough to want to help. And for that she was grateful.

While all of this was happening, her son diligently searched for a job. He had two strikes against him: he was heavy and didn't have a GED. He found a GED class nearby and went night after night and passed a portion of the test but the tutor told him that she couldn't help with the next section which was math. There was another class 18 miles away but there was no money for the extra gas.

There is a stereotype that heavy people are either lazy or unreliable. He was neither. The longer he went without a job, the harder it would be for anyone to consider him for a position. He needed some kind of work record and I suggested that he volunteer on a refuge so that he could start building up references for a job application.

The refuge staff, realizing that the expense of gas to go back and forth was a problem for the family, paid him $20 a day to cover mileage. When Social Services found out about the reimbursement payments, they cut the family's food stamps because it was viewed as income.

Repeated attempts to explain what the $20 was for and even a call from the refuge manager didn't move the Social Services worker. It was costing the family more than the reimbursement so he stopped volunteering.

Dorothy occasionally became depressed not because she was bipolar but because her life was depressing. Repairs to the house were constantly put on hold because there was no money to do them nor program that could be found to help. I called government agencies, churches and other nonprofits but no help was coming. 

When she became too unsteady to stand in the shower stall, I mailed her an adjustable-height stool that would fit in the shower, but she never had the opportunity to use it. By the time it arrived, the cold water in the shower wouldn't turn off so plumbers were called again.

Two different companies said that the only way was to cut through the wall from the outside and the cost would be at least $1800 to fix it. Instead, they were paid $100 to cap off the faucet. There was another bathroom upstairs, but, she couldn't go up there so was relegated to taking GI baths. 

Windows that needed replaced because of rotting casings were covered with plywood and a much-needed wheelchair ramp didn't materialized. My sons were planning on surprising her with a visit this summer so that they could take care of all the repair work. 

She lost weight but the doctor didn't seemed concerned about shedding the 50 extra pounds. I had bought all her clothes for several years and it meant that everything had to be replaced. I shopped sales, thrift stores and garage sales but one item remained elusive - bras. We couldn't figure out what size she needed.

It would have been easier to give her money to shop at Walmart but she had stopped going anywhere except to see doctors and to come to my house a couple of times a year. I asked her why she wouldn't shop since they had motorized shopping vehicles for the disabled. I knew that she loved going into stores to see what they had even though she couldn't afford to buy much if anything.

She said that it hurt her feelings when people frowned at her when she pulled out food stamps and she thought that her toothless smile made them think less of her. She was trying to protect her feelings by simply not going out in public.

Her last trip to my house was two years ago. She didn't come back because she was afraid of our stairs even though I assured her that we could get a special seat from EMS to get her up them.

She enjoyed sitting on the sun porch and watching the birds, rabbits and other wildlife that roam around. And being in a place where there always is laughter and tales really seemed to lift her spirits.

I was determined to get her out of the house. I convinced her that we needed to take a day-long jaunt and that I could rent a wheelchair. An employee put it in my car so I had no idea how heavy and cumbersome it was. 

Our first stop was Island Farm because I knew she would enjoy seeing all the kids, barnyard animals and activities. But I couldn't budge the wheelchair. Luckily, a friend was leaving as we arrived. He wrestled the monster out and helped get her into it. He then pushed it through the grass to an area in front of the house where they were making candles.

He left to rejoin his family and Dorothy mentioned him throughout the day. "You have such nice friends - he was so kind." She was grateful for his help and friendliness and took both very personally.

We started to go to the cookhouse but the wheelchair wouldn't go forward in the grass. We headed for the car with me pulling it backwards and although there were adults all around, no one offered help. The day's outing was going to have to be from the car because the wheelchair idea wasn't going to work.

The Cape Hatteras Lighthouse and the house from "Nights in Rodanthe." called and we responded. We laughed about stupid stuff all day - the kind of humor that only sisters can share. Lunch was out of the question because if she had 'to go' there was no way to get her into a bathroom.

This day is burnt into my memory because it is the last time we had an adventure together. And it is the last time she felt part of the world.

The week before Christmas, I visited with her for a few days so that my brother-in-law could visit his family in Virginia. 

On the way there, I picked up Chinese food for our dinner and she was thrilled because she hadn't been in a restaurant for years so it was a treat. I spent the next few days taking care of some things around the house that needed tending. She spent most of the time in bed watching television because her back was really hurting. 

Their box springs and mattress were on the floor so I went shopping for a bed frame. When I told her that it was in the car, she said I should take it back. They didn't use a frame because if she was in the house alone and fell, it was easier for her to crawl back into the bed from the floor. There were towels piled up in the floor around the bed, but when I went to pick them up, she stopped me. Those were there so that if she fell, she wouldn't hurt herself so badly.

As I cleaned house, I realized that almost everything she had came either from our mother or from me. All that money that she had spent over the years had not gone toward buying things for herself - it was always for her friends. Loans that never got paid back, furniture, plane tickets for a family of five to go to the west coast - she was trying to make sure that she had friends. Of course all the recipients left the scene as soon as they got what they wanted. She just wanted a friend.

She was different but I couldn't put my finger on it until thinking about it on the way home. She never asked me for anything - not food, water, clean clothes - not anything. When I offered them to her she quickly said yes but she didn't ask for them. 

Dorothy had reached the point where she didn't think she had the right to want anything no matter how basic. 

Her hair was a tangled mess and when I handed her a brush, she raked it across the top of her head and asked if that was good enough for me. She didn't care anymore.

I was to go back this month and she agreed that she might want me to cut her hair so that it was manageable. 

Poverty had drained her of the blood of her soul like a vampire.

I talked to her a week before she died. I called and she said that she didn't feel good but would call me later in the week. It was our last conversation. Before we hung up, I said "I love you" and she responded, "Oh, and I love you."

The next time I spoke to her, she was unconscious - or at least I hope so - with wire and tubes going to various drips and machines. She had sepsis shock caused by an abscess in her lung. She was extremely ill and it didn't look hopeful that she would recover.

Although she had a do-not-resuscitate order, the decision was to put her on a ventilator and fly her to Pitt Memorial where it was hoped that doctors could operate to remove the abscess.

At Pitt, more bad news. Dorothy's primary physician had retired in November and her files were transferred to another physician at the clinic. Even though she was on Warfarin, the office had not scheduled her for an appointment for blood work since November. She had been scheduled for her first visit to the new doctor a few days before but had cancelled because she had diarrhea and was afraid of having an accident on the way.  I was stunned. I always asked about her appointments and didn't realize that when she said she was going during those months, that it was her pain management doctor who didn't screen for Warfarin use.

The Pitt doctors said that even if the antibiotics started reducing the infection, they couldn't operate because she wasn't able to clot at all so she would die. The abscess was the largest that they had ever witnessed and it took a long while for it to grow to the size it was - this wasn't something that just quickly happened.

Her heart beat wouldn't drop below 135; her blood pressure was barely there; and her oxygen levels were all over the place. They had paralyzed her to insert the ventilator so she laid there with her eyes unable to close and her body stiff. My prayer was that she didn't know what was going on because I couldn't stand the pain of what she would be feeling and thinking otherwise.

Visiting with my nephew and brother-in-law in the waiting room, I found out that they had not had heat in more than a week including the days when the cold snap brought the snow. They hadn't told me because they didn't want me to worry about it. They assured me that she stayed warm because they put all the heaters in the bedroom with her.

When I left the hospital late in the afternoon, I worked to replace the vision of her in the hospital with my favorite one of her as a child. If she had had proper care the outcome may have been different.

She died the next day. When I talked to my nephew, I found out that they had stayed at the hospital until about 11 and then he had gone to the job he had recently landed at 4:30 in the morning. His boss knew Dorothy was in the hospital and asked him why he was there. He didn't want to lose his job. 

They sent him home but before he could try to get more sleep, the hospital called them back in. That afternoon, God graciously took her out of her pain.

Many friends have asked if they could send flowers somewhere or donate to a charity in her name and I told them I would get back to them about how to recognize her passing.

And now, I'm back. 

Help me make her face the face of poverty so that the poor are no longer invisible. Her life was fraught with more challenges than most in poverty but some of the same things face them all. We must be better than this.

If someone posts a meme on Facebook that infers that some work so others can get "free stuff" - let them know that poverty comes with a high price tag  - often one's life.

Frequently, those who post such comments also send out memes that state: "Share if you love Jesus." Please let them know that isn't the kind of sharing that Christ was referring to.

If you can't educate them, then unfriend them.

The memorial service was special because her one friend in the entire world came -  Debbie, her childhood friend who has remained such for about 50 years - and her mother attended. And for that one friend, Dorothy was always grateful.

But she wasn't the only one to suffer from North Carolina's poverty crisis that legislators try to keep bottled up and out of sight.

To learn more about the state's worsening epidemic of hunger, illness and hopelessness, watch this video of a presentation recently given in Dare County by Gene Nichol, director of the Poverty Research Fund at UNC-Chapel Hill.  Attendees were so engaged and enraged at what he shared that they would still be asking questions if time wasn't finally called. It is long but well worth watching even in segments. Gene, a UNC law professor made it very clear that he was not speaking for the university.


  1. I have read this three heart aches. thank you for writing this.

  2. Sandy,

    Thanks for sharing your very personal story. By putting a name and a face on poverty in your blog, I know you will touch a lot of readers - hopefully those who have no understanding of poverty - and will make them more attuned to the plight of others. After all, any of us with just a small change in circumstances could be faced with huge challenges your sister, Dorothy, so bravely endured. I think both of you are the faces of Love!