Author: Esme Goldblatt, Childhood & Family, Coming of Age, Death & Dying, Endings, Family, Identity, Illness, Loss, Love, Mental Health

When Grace came for her interview, she struck terror in the residents of our Group Home. She entered in the doorway which, in terms of width, she filled. In height she was but a gnome, barely reaching my shoulder. The group were genuinely afraid of her. She had deformities of her face and body but what unnerved them the most was the glare from her very large, green, ex-ophthalmic eyes. Everything about her stance and her expression proclaimed a fierce self-will.

From the background given by her family, the social worker and from her records we learned that Grace had been born with scoliosis, brain damage, a weak heart and generalised disabilities. The doctors predicted she would only live until she was about 16. Her parents therefore decided to give this child the best 16 years they could. They chose to do this by never saying “no” to her. By letting her do and have whatever she desired. While she was still very young, she spent many months in hospital undergoing surgeries to help straighten her spine. This only compounded the sympathy her parents felt for her and they simply gave in more and more to her every whim

So, this young girl grew up feeling thoroughly entitled. She was demanding and discourteous, especially to those closest to her. By the time she was twelve she had no idea of boundaries and it was not unheard of for her to walk into the family kitchen before a meal and eat an entire roasted chicken on her own. Nothing was ever done to correct this.

By sixteen she was still very much alive.

Then her father died and she stayed with her devoted mother until she was thirty-five. Then the mother passed on and her older brother and sister-in-law had to take her in. But they soon found they were out of their depth with her and they came to us desperate, explaining that she disrupted their household, was rude, spoilt and did not cooperate with them or their two growing children.

According to her medical records, Grace had Type 2 Diabetes, hypertension and the beginnings of heart failure. She was on medication for the blood pressure and the diabetes but her obesity and eating habits were never addressed

During the interview I was sitting on the same side of the long dining room table as Grace. So, I did not look directly at her but was strongly aware of her presence beside me. This turned out to be very fortunate because I did not expect what then emanated as a very clear feeling from this obviously difficult woman. I sensed in her something subtly different from the personality and form she was presenting. What came through to me was soft, kind and actually quite beautiful. This was the deciding factor for me in the meeting with Grace.

Over the years, anyone coming to be interviewed for our Group Home for Adults with Intellectual Disabilities would need to spend some time alone with our other residents. Afterwards we could ask them if they felt the person would fit in. Their opinion was always taken very seriously.

So, after Grace left, we waited for their reactions.

The response was unanimous – “NO!”

“Nee – she’s scary!” said Anna.

“Ouma, did you see her teeth? Her eyes?” said Edgar.

“She is so bossy and cheeky. No!” said Clive

“Sy lyk soos die tokolos Ouma**” whimpered Marie.
[**Ouma was my nickname, given to me by the residents. I was in my thirties.]

We had never admitted anyone that the group did not feel happy about. But this time I said,
“I really believe we must give her a chance”. After some discussion I could more or less reassure them that this was the right thing to do and we agreed to admit her for the usual 3-month trial period.

She arrived on a Sunday. Her brother took her many suitcases of clothes and boxes of personal items to her room. Then he fetched in about six fully laden shopping bags of cookies, chocolates, candies and potato chips which I thought must be a gift for our whole group.

“Should these go to the kitchen?” I asked.

“No, no these are for Grace.” he said, heading to her room.

“May she eat all those things? They are regular sweets, not diabetic ones.” I mentioned, astonished.

“Well…. she loves them…and…. you know how it is?” he said shrugging. He dropped off the bags and quickly ushered his wife out to their car.

Before speeding off, he handed me several containers of artificial sweetener through his open window, as if he had just remembered them. “She must use this in tea and coffee,” he said.

I just shook my head as they pulled away.

That Monday first thing I took Grace to the local doctor who found her blood pressure reasonably controlled but her blood glucose level was up in the high twenties. This was serious and could not go on he told her looking earnestly at her. I nodded. Grace scowled as if she knew she was about to be told “No” for the first time in her life.

“No more sweets Grace, no cakes, no puddings, no jam, no nothing unless Ouma puts it in front of you – alright?” he said to her firmly.

Green fire flashed at us, her jaw tightened and she clenched her little fists as we left the doctor’s office. She was still complaining loudly to me when we arrived home. She could not believe it when I removed all the snacks from her room.

“You heard Dr Simons.” I said.

So ensued a standoff of mutually dug in heels for some time. But there was no relenting on my part and no matter how many grumbles or tantrums, I made sure she remained scrupulously on the correct diet. Of course, I felt for her because it could not have been easy to suddenly have to watch others eating a malva pudding with custard dessert while she had to be satisfied with a piece of fruit and some unflavoured yogurt. But she was given so much consistent praise and endless encouragement for sticking to this regime that as the weeks went by, she began to adapt to the change with fewer grunts and glowers.

Integrating our residents into the community of our small rural town was a cornerstone of our program. So, getting Grace to stick to her new eating plan outside of the house also had to be faced. Our residents went visiting in town regularly and attended many functions where they were warmly welcomed and offered generous refreshments. We had to drill Grace to say “No thanks I am not allowed to, I am diabetic” and this was a lot harder than controlling her diet at home. Often, when I could not be at these outings, I would appoint one of the other residents to try to keep watch on what she ate. And as to be expected this often ended badly. Fights and arguments ensued and these discords needed resolving when they returned home. But in time, I was able to convince the very generous hostesses of the community to please offer Grace something not loaded with starch and sugar. And they did and this problem was then handled.

But during the first few weeks and months with Grace we not only worked to alter her appetites but we also had to challenge her behaviour especially towards her fellow residents. She had good “company manners” and was always charming and agreeable to the public. But she was so used to manipulative relationships with “family” that initially, at home with us, she was a tyrant, still expecting to always have her way and be put first. It was a surprise for her to find that although we wanted to love her and that we deeply cared about her, we refused to pander to rudeness.

Right from the start I had mainly been the one to correct Grace when she was bossing another resident around, giving orders or pushing someone out of her way. She refused to be contradicted ever and would answer back with venom. She did this once with me. But only once. And she was genuinely shocked at my immediate censure.

The difficulty was that she held the residents in a spell of almost superstitious fear. She only had to glare at someone to get her way or have her demands obeyed. This of course had to stop.

“Why do you allow her to yell at you, to boss you around, to grab things from you or make you do her chores?” I would ask them as one by one they came to me to complain about her bullying.
.
“But Ouma she gives us that look!” They would say, noticeably distressed. “She must go. Tell her brother to take her away.” I was often quite torn by their discomfort but kept remembering what I had felt about Grace during the interview.

“I can’t tell her to go just yet.” I said to them “But anyway she is half your height, most of you. She can do nothing to you.” I would say to both the men and the women who equally backed down for her. “She is not magic, no matter how she looks. Just say “no” to her and see what happens.”
I repeated this for weeks on end.

Eventually the group somehow gained resolve and began to react to her in a more realistic way. Together we could now go on grinding away at Grace’s stony surface and after a few months of this unified stance, Grace began to change. More and more often she would respond pleasantly. She would react in a fair and reasonable way towards the others. Until she seemed to realise how much better things turned out if she cooperated, was polite and got along with everyone. At last she must have experienced how it felt to be included and liked rather than just always obeyed.

Grace’s eventual transformation was astounding. All in all, it took place over about 1 year. By then she had also dropped about 4 dress sizes and in the process, had turned into a disarming elf. The bullfrog cheeks hollowed down. The strange undershot jaw and protruding lower teeth were no longer so disturbing in what emerged as the delicate face of a sprite. Those enormous green eyes still protruded but the brittle glare had completely dissolved. So that, now, diminutive in stature and open-hearted in demeanour, with an ethereal dignity, the Grace I had sensed that first day finally stepped free.

As with many transformations there is no one point where you can say ”Aha, that was what did it – that was the day it happened.” We simply realised, as time passed, that Grace had been so helpful, so sweet for so long; she had caused no fights, been loving and agreeable for so many months that no one could even remember what she had been like before. She was now a real treasure to have in our family.

Then one day she began to fade.

She returned from a short vacation on her uncle’s isolated farm in the cold shadow of the mountains, looking tired and drawn. She was very pale; her belly was badly distended and after the mildest activity she would be exhausted and breathless. Previously she could stride briskly along with the others but now she found that even the two blocks to church was too much for her.

Our local doctor examined her thoroughly and grimly told me he was sending her to the hospital in the city for tests. This process was to turn out lengthy but they eventually confirmed the diagnosis we had all dreaded. Her kidneys were failing. Years of uncontrolled diabetes had left her body ravaged and she had aplastic anaemia. There was nothing that would reverse this; we could only manage it for as long as possible. Bravely, without really understanding the full implications of her illness she began to submit gently to her growing discomfort and progressive loss of vitality.

She received regular blood transfusions which meant time in hospital. We preferred it when she could go to our small town’s cottage hospital so we could be with her. But most often she had to go to the city two hours away because other treatments were also needed. Despite having her brother there, she received virtually no visits. We would call the hospital every day and she could sometimes talk to us on the duty room phone. We always heard from the staff how she lit up the ward she shared with the poorest of the poor; of her friendliness and the beautiful prayers she said for them. Everyone, doctors, nurses and patients loved this elfin woman who smiled and chatted and never complained.

When she came home, she was more and more confined to bed. As she weakened, she could do little for herself. We bathed her, changed the diapers she eventually required and assisted with whatever she needed day and night. At this stage she was being showered with attention and pampering when she actually did not want it anymore. By now she had become so sensitive that she apologised continuously for needing so much care and expressed endless thanks. Neither were needed as it was a true pleasure to assist her.

Her room-mates Dana and Maxie were inspired. I have never seen such joyful, selfless care. Often, they would call me at 2 or 3 in the morning so we could change the bedding and lift Grace into a warm and cleansing bath. They helped me care for her like two professional nurses with tireless patience and thoroughness. Every so often Grace would whisper to me, out of their hearing, to buy them some gifts from her pocket money to show her appreciation. She would look utterly delighted when they showed her the new crayons or the chocolates she had given them.

As her physical state deteriorated so her radiant spirit came more into view, a significant light in our home as her condition worsened. And so, we could share in her brave and gracious preparation to release a body that had troubled her all her life.

On Easter Saturday the housefather had an idea to set up his video camera in the dining-room in front of our Easter display. Each of us in turn was to speak for a few moments, with only the eyes and ears of the camera present, alone in the room filled with green and gilded palm branches, painted eggs, black, red and green drapes and dozens of candles which we lit at all meals during that week. At the end of the day we gathered together to view our conversations.

Each one was perfect: innocent, uncontrived and unique, addressing their own perception of Deity or their departed loved ones. Some expressed many thoughts and feelings, others only spoke for a few seconds; some were funny, some shy and some messages were just silence or sighing or a smile.

We carried Grace from her bed in her yellow fluffy pyjamas and she had a turn speaking in a soft unhesitant voice. Like a prayer she said how much she loved and appreciated Jesus. She told him how she missed her mother and she shed a few tears. Then she thanked him for everything he did for her and for her wonderful friends.

As we watched Grace on the tape, all around her the screen began to glow, with a luminous golden yellow that had not appeared with any of the others’. Even long afterwards when we played that tape no-one could decide if it was just the candle flames reflected off her yellow pyjamas or did Grace, that last Easter, already begin to move off into the light.

Her birthday came that spring. It was a quiet and happy day. None of her relatives visited, but they called and sent gifts. She was forty-three.

A week later she had to return to the local hospital very ill and we were told to notify her family urgently that weekend.

They never arrived saying they were busy, or their car was broken.

We stayed with her. She was barely conscious and, on the Sunday, her little limbs could not find rest but thrashed around as if wanting to begin on a journey. She smiled a lot.
Early Monday morning she stepped across into the golden yellow light.

Now the family found the time and attended her funeral and I watched their tears and again could only shake my head.

We would visit her grave often and leave flowers but there was no money for a headstone. The following Easter Saturday, we packed the minibus with plants and a pile of clean, white river stones. We decorated her grave with pagan flourish in a riotous planting of flowers and set a large cross of the white stones into the silver-grey Karoo earth. We said prayers, one by one, as the autumn clouds lowered over us and we all felt Grace’s deep, glowing peace.

To my knowledge none of her family has ever visited her grave.

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