"Then in the fall of '95 I started swelling up as my kidney function was lessening due to fourteen years of diabetes not being kept under the best control. I'd been anorexic and bulimic for the past ten years, and they were wearing on my body as well. Diuretics worked for a few months, but the doses kept going up and their effectiveness down until I felt like a sausage stuffed into my skin. I was so swollen.”
In February of '96 Sue discovered that at night she became almost totally blind. Only in bright sunshine could she still see clearly. She went to an eye doctor who diagnosed retinopathy and diabetic glaucoma. He gave her several laser treatments to seal off the bleeding vessels in her retina, each time promising that her sight would be really bad for a few days then improve.
Sue comments:
“I didn’t realize I was going blind because my eye doctor never told me. I’d go in for laser surgery, and he’d say “Your vision will dim for a couple of days and then get better.” So I’d walk around with what seemed like a sheer grey veil over my eyes, bumping into things but not worrying, just patiently waiting for a couple of days to pass. But it never got better. Since losing my sight, I’ve talked to many blind people in various places, and have heard the same story- and it REALLY pisses me off. Those doctors see enough people to know that, after a certain number of surgeries, the situation is hopeless. To mislead their patients is inexcusable in my mind. I think they don’t want to be the bearers of bad news or else be burdened with the emotions the news will bring or something, but instead of me preparing for what was coming I just went on my happy way until one day it blinked out altogether. It was a slow process, taking over a year, but still… In that year I could have been taking my “last looks” at things, like photos and friend’s faces and my house and… I also could have started on Braille and mobility with the white cane and labelling clothes and so many other things. Instead I had to start in the dark and work my way towards light again, so to speak.”
By March Sue was seeing (?) another eye doctor for glaucoma. The eye pressure was so intense that she'd get migraines where she literally screamed in pain. Sue had a lifetime history of being an excellent patient, a non-complainer with a high pain threshold. Her mother quickly realized the severity of her condition and rushed her to hospital where the doctor cut little triangular flaps near the tear ducts and 'burped' her eyes – literally pushing out air and relieving the pressure.
Sue takes up the story:
“The 'burping' process was awful, but the relief was so wonderful I didn't care. I had many visits to the doctor at all hours of the day and night for the next couple of months, until she worked out an array of drops that kept it down once and for all. I was taking five different drops in different amounts at different times through the day. I felt chained to the things, but knew if I skipped I'd be asking for a migraine.”
Sue tells of an experience that made her realize that she could no longer drive.
“I ran to the store on Mother's Day, and while I was inside a storm rolled up. I was terrified trying to get home, and really was driving more by rote than sight. I wisely decided not to take a chance with others or my life again and turned in my keys. As it worked out, the car sat in the driveway for a year and a half before I could bring myself to sell it - and then it went to a 16-year old for $50. A mustang, in great condition! I cried for hours, it was like the last step to admitting I'd never drive again - the last sliver of hope gone. Then I got over it and took my Mom and sister out to lunch.”
She is candid about her feelings at that time.
“Everything was very confusing, and happened so quickly I didn't really absorb it. I was depressed and angry, and unfortunately Mom bore a lot of the brunt. I also had minutes where I'd wake up from a dream, which were and still are in full colour, and forget that I was losing my sight. Then reality would come crashing back in and I'd have panic attacks and scream until Mom came running to calm me down. But overall I always thought I'd get through it and go back to life as before- return to finish school, etc. There was really no single moment of epiphany when I knew I'd never see again - or I'd have spent a lot more time staring at the things I loved, and would want to remember always.
Pictures of my Dad & extended family, Mom and my sister, the cat, the garden, every nook and cranny of the house, the blue sky, birds and squirrels... Sigh, hindsight is 20/20 - and most of this still lurks in my memory to come out when I sleep or at the odd moments during my writing. I know, because it always brings a slight ache to my heart as well.”
~~~~~~~~~~~~~~~~~~~~~
Transplant and Aftermath
A healthy future was not to be. In March of '96 Sue’s endocrinologist suggested that she sign up for a kidney/pancreas transplant, saying that it would save her sight which had worsened as her kidney function lessened. She was in the midst of a vicious cycle. The endocrinologist knew where Sue was headed but didn't tell her patient.
Sue is philosophical about the doctor’s silence.
“I'm not sure if this was wise or not. Maybe it was for the best, as I didn't sit worrying about each new phase of my body's failure until it was sprung upon me.”
But then the humour re-surfaces, as it has done all her life.
“The transplant clinic gave me at least five pounds of information on paper, of which I read none - what did they think? It was a strain to see big objects like couches and such, so there was no way I'd be reading anything. I tried to hold as much of what they threw at me in my head, but it was overwhelming, to say the least. Average wait 2 ½ years, lifespan of transplant average 8 years, lists of medications I'd be taking for the rest of my life, technical aspects of the surgery, on and on. I left with my brain whirling and a pager which would have to be worn or kept with me at all times, so they could call the instant a donor was found.”
It seems that if something unusual or ironical were to happen to anyone, it would happen to Sue Scott. Sue explains:
“The pager went off continually - the number obviously had belonged to a drug dealer, and until we got it changed Mom and I lived in a state of constant panic.”
From March to September life settled into rounds of doctors’ appointments for every single inch of Sue’s body, both inside and out. It was vital that Sue be prepared to go when the call came. Hanging over her head at all times of the day and night was the knowledge that if the call failed to come within a year she would have to go the rounds again. With her worsening sight, car travel was a nightmare and she couldn't go anywhere without getting sick. Sue and her mother took to keeping a 'safety bucket' in the backseat, so that she could whip around and grab it immediately it was needed.
Sue’s physical condition deteriorated as she explains.
“In September I had to go on dialysis, and that was something I hadn't considered. It was decided to put me on peritoneal, since it's easier on the heart than haemo. So every night I got hooked up to a machine in my bedroom that filled my peritoneum with glucose water and drained it, drawing out the day's worth of toxins from the kidneys. Life sort of settled into a routine, but I slowly began to decline. The doctors were helpless. They had done all they could, but my body had taken over and the diabetes had become impossible to control. My kidneys would hold insulin, letting my blood sugar soar, until they suddenly dumped it and I'd wind up unconscious from a zero blood sugar level (an average level is 80-120)."
Most people find it difficult to have to wait for some event to happen. A child on Christmas Eve, an actor about to go on stage, an author about to release a book for the first time, a woman about to give birth, a short story writer waiting on the release of her tale to the sharpened pens of ss_group_main, a murderer awaiting execution, a writer waiting for Ron to crit - all have this one thing in common – having to wait while their future rests in the hands of others. Sue remained in this limbo land for a period of eleven months. Not so surprisingly in her case the wait was not heavy on her mind and she found, even in her circumstances, the opportunity for some wry humour.
“I really hadn't thought much about it - being as how I didn't expect to hear anything for at least a year and a half. Besides, I was getting sicker and sicker- and my mind was taken up with the daily battles of living. The only 'good' thing was that the sicker I got the quicker my name got bumped up the donor list.”
On Saturday, February 15 1997, a date forever etched in her memory, the wait was over.
“I got the call eleven months later at 11:30 PM. My sister had made dinner for Mom and I (fish, broccoli, cheese bread) and she and I were in my bedroom watching 'Saturday Night Live.' I heard a "bzzzz" noise but couldn't place it, until Mom shouted that the pager was going off and vibrating its way across the dining room table. She'd no sooner finished saying that than the phone rang and she called me to it. All this is printed indelibly in my mind – ‘Susan, this is Simon from the transplant clinic. How would you like a new kidney and pancreas?’"
The news brought pandemonium to the Scott household. Sue burst into tears and her mother had to take the phone. Sue remembers how confused Simon became and how she saw that as odd when she realized that he must have delivered just that sort of message many times.
“When he delivers news like that, what does he expect, calmness?”
was a thought that occurred to her then and has remained in her consciousness ever since.
As Sue managed to regain control, she learned that her chance at life had come out of tragedy – really the only way that it could have eventuated. Her donor had actually committed suicide the day before by drinking antifreeze. Her husband had found his wife lying on the kitchen floor when he came home from work. The hospital had kept her alive to monitor any damage that she might have done to her internal organs – the anti-freeze had ruined her stomach and oesophagus but her kidneys and liver were fine. She was rated a 3 out of 4 match for someone with Sue’s need – a rating which Sue describes as ‘pretty darn good!’
Her own words tell of what was racing through her mind on that eventful evening.
“So I ran to the bathroom to get dressed and brush my hair and teeth, and while I was there I remember thinking two things: what an irony that my new organs became available on Valentine's Day, sixteen years to the day since I discovered I was diabetic and went into the hospital to start my new life, taking insulin, testing for glucose levels and giving up sugar... and that things would never be the same again, that after this I would be a different person. If I had only known!”
Sue was in the hospital until April when she was moved to another hospital's physical rehabilitation facility where she stayed for another two months.
“I was so weak at the start I couldn't sit up by myself - it took all my strength to grasp the bed rails and roll onto my side. A real mess! Plus I only weighed 114 lbs.- once all the water weight had drained off, that's what was left. Half my hair had fallen out due to the radiation they'd given me to kill my immune system after putting the organs in, so I wouldn't reject them immediately. People commented on my 'red' hair, which I thought was strange. Apparently the brown fell out and the stubborn red remained. Thank goodness for small favours! I'll never curse my Irish heritage again.”
Sue is adamant that rehabilitation . . . was the hardest thing she had ever done in her life so far. She reports that she was so tired her bones ached, and that the therapists were relentless in pursuing their job.
“I had to relearn everything - how to sit up, how to swing my legs to the side of the bed and sit without following them right over and onto the floor, and how to stand. The last was the worst, since my already low blood pressure would drop into non-existence and I'd get so dizzy I would feel sick. They wrapped my legs in ace bandages to help with circulation and it was a matter of try and try and try, until I'd be so tired and so frustrated I couldn't help crying. I learned how to transfer from the bed to the wheelchair, first with a nurse's or Mom's help and eventually on my own. I also learned how to get back in the chair, or on to the couch, should I fall. I spent one day just transferring from the chair to the car and back - an important thing since Mom wouldn't have strong therapists around to pick me up off the ground when I slipped. Despite how little I weighed, she wasn't strong enough to lift me herself.”
There was little room for humour in Sue’s life at this time. She recalls:
“It was only later, when I started learning how to be blind that the black depression began to lift and my sense of humour came back full-force. I remember laughing out loud and stopping short, wondering how long it had been since I'd done that. All in all it was a pretty grim time.”
Then, as though she feels that she has let her biographer down in some way, she promises that “I’ll wrack my brain and try to remember funny stuff though.”
Sue’s laughter trickled from her throat for the first time in many months during a group therapy session. It took her completely by surprise. People were parked in their wheelchairs in a circle and the therapist would throw a foam ball to someone and tell them to name an American State beginning with a certain letter, for example 'v'. The patient then had to throw the foam ball back to her. People were there for a variety of reasons. There were hip and knee replacements, people recovering from automobile or other accidents, a lady who'd had a stroke and Sue. The activity was handled with varying degrees of success. The woman who had suffered the stroke would manage to get the ball in her lap, but instead of throwing it to the therapist, she'd bean Sue in the head with it, every single time.
“After the third or fourth time I started to giggle, my sick sense of humour kicking in, and then laughed uncontrollably the next time it happened. It was wonderful, and I left that session feeling somewhat alive again and happy despite my circumstances. After that I laughed a lot - whenever I did something stupid, like knocking my entire lunch tray into my lap or tripping over the end of an ace bandage and landing on my butt on the hard floor.”
Towards the end of May it was determined that Sue should move out. She was extremely reluctant to go. She explains that, “I'd become institutionalised and felt safe surrounded by people who dealt with this stuff for a living, plus I was used to constant noise and bustle and people popping into my room.”
Desperate to find a solution to her daughter’s problems, and by inference her own, Sue’s mother searched for and found a rehabilitation unit which offered occupational and some physical therapy. She signed Sue up in the fall and in December Sue took up residence and “instantly became one of the living again.”
This was the supreme turning point in Sue’s new life. Before this time she had received no training in how to be blind. She had retained the barest amount of vision and the doctors and therapists had concentrated solely on repairing her body. What is amazing is that at this very late stage, Sue had not grasped the truth that her vision was never going to return. There remained hope in the face of overwhelming evidence to the contrary, a comment not only on Sue but on the resilience of the human condition. Sue’s explanation may be a little facile when she argues:
“I think my failure to realize that my vision was not going to return was due more to the depression than anything else. On some level I must have known, but not on the conscious one.”
With the new opportunities now open to her, Sue began working with the blind unit and learned mobility – how to use the white cane with the wheelchair (she was still too weak and too thin to walk), and learning Braille and how to use a Braille writer (a machine similar to a typewriter with seven keys that punches the dots) a Braille and speak, a slate and stylus, and the computer. Lou, the mobility teacher, was a comedian who had a thousand jokes with a different voice to go with each one. He made Sue remember that she could be funny too, and her sense of the ridiculous began to reassert itself.
Sue recounts:
“As it was the 'Blind Unit' and we were all mostly to fully blind, the lights in the unit were usually off. Once when a custodian came in and said, "I'm turning on the lights, okay?" at the exact moment he clicked the switches, something just came over me. I covered my eyes and yelled, "No! They're too bright!" The poor guy instantly turned them off and apologized profusely - while the rest of us laughed our fool heads off. I had to explain that it didn't matter to me, since I could only see the faintest glimmer of sunshine.”
Humour now became the perfect foil for Sue to use to counter the mental depression that waited, ready to pounce at the first sign of weakness. Examples now begin to flood from her repertoire.
“Another time I was up near the nurses' station, talking to one of my favourite nurses and another resident asked how I could tell what I was wearing. I happened to have on a dress that I'd bought when I could still see and told him that I could feel the difference between colours. I rubbed the material of the skirt between my fingers and told him the dress was blue - it felt cool and smooth to the touch. He was awestruck, and I'm sure his jaw was hanging open. Meanwhile, the nurse was choking with laughter, she knew me too well. I went on to say that I could tell plaids by the squares and polka dots by the circles and stripes by the lines. To this day I’ll bet that guy goes around thinking blind people know what colour fabrics are by using their sensitive fingers.”
Further examples trip from her tongue. It is as though now her sense of humour was back, she attracted situations that turned into farce or comedy without any impetus from her.
“On one of my first forays around the building with my cane, I felt confident enough to use a bathroom. Remembering where Lou had told me each one was, I went into the women's and felt my way towards a stall. Imagine my surprise when a man's startled voice asked what I was doing! I grasped the cane, ready to swing it at his head, in case he was some pervert who snuck into ladies' rooms on a regular basis. Luckily for him, another guy came in with a friend and I sort of figured I might have turned right instead of left and was parked in the men's room. They were all very nice about it, especially the first man, who would have been flashing me had I been able to see it. (Darn!)”
Learning in the Blind Unit proceeded at a swift pace. Sue had lessons in how to eat, and how to arrange the plate according to the hands on a clock (“meat is at 6 o'clock, green beans are at three, roll is at eleven”). Mince or baked beans or gravy found no place on the menu owing to their intractability over recognition of the hands of the clock. There was a particularly memorable lesson in cutting meat so that Sue didn't pick up huge chunks with the fork and try to stuff them in her mouth. She remembers being served an 'Idaho steak,' which was a thick slice of potato and told to cut it into bite-sized pieces. She reports that she “sawed and sawed away at that darned potato and got nowhere”. Finally she asked the teacher what she was doing wrong. After feeling the situation over, the teacher discovered that Sue was using the wrong side of a butter knife. When done properly, the task was insignificant and the steak knife cut through it as though it were butter.
In another life Sue Scott would have been regarded as outspoken, eloquent, facile with the tongue or ‘a goddess of free speech’ dependent on her audience at the time and the number of drinks she and they had consumed per quart per second. However, in the Blind Unit she learned the hard way to keep her mouth shut. There was an occasion when the authorities, some said bureaucrats, brought in new Braille voting machines for the patients to try. Sue takes up the story:
“The things were obviously designed without ever consulting a blind person, and I loudly proclaimed them ridiculous to my Braille teacher, who was trying them out, too. The problem I was to discover was that the woman next to me was from the voting office and became very upset, and I was forced to explain to the entire little group that had brought them why I thought they wouldn't work. Oh brother, talk about foot in mouth! But maybe my criticism helped some - I haven't seen the new machines yet.”
Having to re-learn so many everyday things that sighted people take for granted is a massive undertaking for anybody who has approached the doors of death, been invited in but, through sheer stubbornness and a belief that life has not yet been fully experienced, has declined to take up the offer. Sue’s big chance came when she mastered Braille.
“Braille kept me sane - the minute I learned the alphabet I was off, writing stories and keeping a journal - then when I got a ‘Braille and Speak’ it was pure heaven. So much easier, kind of like typing from a keyboard - only using 7 keys. I made different files and started to get my life organized once again.”
She continues:
“Every new thing I learned made the world less scary and huge. Being able to reach out with the cane helped me to see where I lived – the hallways and doorways, and learning how to hear as a blind person, what to listen for, sound cues which helped me to feel how big my world was - I got a sense of hall sizes and of class sizes as I passed open doors and learned to pick out sounds in crowded places like the cafeteria or malls. I went on shopping trips - once to buy kitchen towels for Mom, just so I could get used to asking a salesperson for help and in making my wants clear. Once I mastered the basics of using the computer screen reader (JAWS) I moved upstairs to the computer lab to learn how to use Microsoft – the entire office package. I know more about it than I'll ever use! I also got lessons on the Internet - surfing, going through web sites, e-mailing, and even bidding on e-bay. The final step was to buy a computer and set it up at home, and then I was off.”
Sometimes the old Greek image of the Fates sitting above mankind with a large pair of scissors snipping away at random at some unfortunate’s life-thread reveals a sadistic side. Randomness is forgotten. So it seems with Sue Scott. Her life is coming increasingly under her control, she has found a new reason for living, having banished the demons who would tempt her into submission and death. She has moved back into her home and life has a purpose. Then, as Sue would say in her usual, Maryland twang, life delivered her a ‘kick in the guts’.
Things at home had changed drastically since she began rehabilitation in December of '97. Her mother’s cancer had come back after nine years in remission, and the family thought that she had it beaten. Then in April of '98 it metastasised in her brain. The doctor gave the mother three months, and that was about the time she lasted. Lauri (sister) had moved into the house to care for their mother in the final months. Sue was at a stage in her recovery where she was living at her school five days a week, learning how to take care of herself and mastering Braille, the white cane and the computer.
Sue’s homecoming was marred by more important decision-making. After her mother died, Lauri began making noises about selling and finding somewhere else to live. She wanted to buy a brand new townhouse and fill it with brand-new everything, while Sue wanted to stay put. Sue held out until December, when she realized that she couldn't take care of their huge yard on her own, and it would be lonely in the house without Lauri. The idea of having roommates did not at all appeal to Sue and she agreed to sell. She found a condominium in March and moved in April and the sisters closed the sale of the house in May.
“That was hard. I spent the last day there going from room to room being utterly homesick and missing my parents. I asked Lauri a million times if we could back out. I'm set up here (in my own place) now, and it's home - a place where nothing moves unless I move it - which is indescribably wonderful after a day of being in the shifting restless world 'out there'. I don't know if every blind person feels this way, but I think they must. When I walk through the front door I want to collapse and just lie on the floor for a while - especially if I've been on a marathon-shopping trip with one of my girlfriends.”
Anyone who knows Sue Scott knows that she is ‘the mistress of all she surveys’, a not entirely appropriate comment to apply to a blind person, but one which conveys the spirit of Sue’s mastery of her world. Like Elizabeth, the Virgin Queen of England (light on the ‘virgin’ now, readers), Sue commands respect in her own domain. After telling her visitors that the wrath of God will descend upon them if they move anything in her place, she describes how she feels about the new life she has negotiated.
“I'm sort of like a baby exploring the world with my fingertips, touching and relearning the shapes of everything. Every day I come across something new to figure out - so I doubt I'll ever totally 'master' this blindness thing. But I do feel much more confident - until I trip over something I was sure was somewhere else – or bump into the coffee table for the eighth time in one day, or hook my foot under a cat and go sprawling, or walk into walls that insist on moving around, or respond to someone talking on their cell phone.
I'm getting less afraid to take small risks. My dream is to jump from an airplane in the spring - then after that I'll have to find something else crazy to do.”
When asked about her greatest frustrations and joys, she is uncompromising. She has been through most of the ‘nasties’ that life can throw her way and, while re-discovering her sense of humour, she has overwhelmed them. In an outburst of honesty, pockets of which continue to be found in twenty-first century Baltimore, she explains.
“The greatest frustration will always be having to depend on people for so much. I was always a free spirit before, independent, and now I’m sort of tethered somewhat. I can't hop in a car and take a long drive when I'm upset, so I've learned to sit at the computer and let my imagination travel instead, and type my problems out.
I find many joys all day long. Laughter is my saving grace - my cat will wake me up by touching my nose with her paw, my boyfriend, Jim Ruff, will crack me up until I cry, I'll hear a song I love or simply stand and feel the sun on my face or get a story published, finish an article for the e-zine I edit, get our newsletter out on time...there are too many to mention. I think just being alive is my greatest joy, since I almost didn't make it to this day so many times. I have an inner core that is stronger than I can imagine, and it keeps me moving ahead when my mind says give up or my physical body is ready to collapse. Plus, I'm an optimist at heart, and no matter how gloomy I get to feeling, I can't help wondering what good thing will happen next, what interesting facts might I learn, what friend will get in touch, or what new story is waiting to pop out of my fingers.”
Throughout her troubles or perhaps because of them Sue has developed a philosophy about living that many in the sighted world have never considered. It is a faith built on optimism and breathes a freshness that a tired world could take into itself.
“People have said to me, ‘I'd kill myself if I were blind.’ I'm not sure how to take this - for one, it's slightly insulting - like, am I supposed to be dead now? And it pisses me off because they won't know what they will feel until it happens to them. If they're that weak-willed, then I guess they're better off dead. But I bet the majority of them would do like I did and cope. It's not the end of the world after all, it's just a new form of
being.”
This is as much of the story of Sue Scott I have been able to drag from her by stealth. Because she’s such a cheeky little bugger, I’ve had to speculate but that is allowed in this new genre – the ‘speculative biography’. Sue has one more obstacle in her future that she does not, until now, know about. This is a world exclusive which can now be revealed. A certain old Aussie is so very proud to call her ‘mate’ – no higher accolade exists in Australia – that, when finances permit, he’s going to visit Baltimore and give her the most sincere hug he has ever given anyone. (Better use deodorant that day, old son, and have a swipe with the old razor. Whiskers tickle they tell me. Sue is one fine sheila, and I love her to bits).
