The Childhood Years
Born June 29, 1971, at Boyup Brook – Passed away at Hollywood Private Hospital on 5th May 5, 2007.
Notes from Carmel’s parents, Jan and Geoff Harris
Carmel arrived just after midnight on June 29, 1971, in the Boyup Brook Hospital. She had skin missing from her feet and hands. Next morning when brought in for a feed, skin came off her lip. Being only a few hours old she was taken to Princess Margaret Hospital in Perth (over 300 km away) by her father Geoff and a nurse. We did not see her for two weeks after that and she was in hospital until the end of the first week in October. I did not even nurse her until just before this.
Carmel was fed with a spoon or a mug with a spout and was on antibiotics for many years. She was not able to wear nappies so each change was three at a time, making 30 to wash each day (every second day by hand). To give Carmel a bath it was necessary to give her Valium to calm her down and make it bearable for both of us (Carmel and mother). She managed to crawl on her bottom and did not walk until 18 months of age.
Carmel went to pre-school the year she turned five and then to the convent school the year she turned six and became a good student. She became very interested in reading and was encouraged at home to play board and card games especially when her grandma was involved.
Help was not available at this time for EB, as very little was known about the condition. There were many trips to Perth to specialists (mostly for dressing supplies) and for stays in hospital. The doctor in Boyup Brook was not prepared to treat Carmel, except for some antibiotics.
Very occasionally Carmel went to stay at one of her grandparents’ homes so we could have a few days away. Carmel and her sister Delvene (nearly three years younger) were good friends most of the time, generally amusing themselves well during the day at play or helping at home.
Carmel attended the first National EB Conference held in South Australia in 2003 as a guest speaker. Here is an extract from Carmel’s presentation about her childhood years.
I was very fortunate to have been able to grow up living with my family, Mum, Dad and one sister on a sheep farm in a small country town approximately 300 km south west from the city of Perth called Boyup Brook. I can say it wasn’t easy for them or for myself having to contend with numerous medical requirements as well as the day-to-day running of the farm.
From when I was a child a lot of the time I wore mittens to protect my hands from breaking down as much. It therefore enabled me to do more things than I possibly would have with bare hands. I was pushed to do things for myself and give a helping hand with farm jobs, even if it hurt or just seemed too hard. This has benefited me in that I am independent as much as I can be and like to try new things.
I was able to attend the Catholic school instead of the government primary school as it was smaller and I wouldn’t get knocked around as much. As far as I can remember I mixed with the other kids pretty well although it was difficult at times because it took me longer to eat my lunch and sometimes they would play things I couldn’t do.
Sometimes I fell over at school and I would bruise quite badly and peel big bits of skin off, especially when I fell going up the stairs. The school tried to include me in all the daily activities, but if the class were doing something that I couldn’t do, I would sometimes help other kids in lower classes with their reading or something. I found this quite rewarding that I was able to help someone to learn.
I was really thrilled when my grandparents bought me a three-wheel bike for my 10th birthday. I could now go bike riding around the house paddock and ride down to the bus stop instead of walking to catch the bus for school. My sister and I sometimes rode around the farm or we’d give each other dinkies as there was a metal bar where I could put my school bag wasn’t a very comfortable seat I can tell you! I used to like giving my friends a dinkie around the place especially down the drive, and they would push me back up!
When I was younger I used to get blisters in my oesophagus and to this day I still do, but not as many. I used to eat my food as it was served up on the plate, mind you it took me at least two to three hours to eat it. Now I have the bulk of my food pureed (certainly something I wouldn’t have when I was a child) and then put through a sieve to eliminate anything that may not have blended.
Carmel attended the first National EB Conference held in South Australia in 2003 as a guest speaker. Here is an extract from Carmel’s presentation about her teenage years:
I purchased a portable typewriter to help at Senior High School so I wouldn’t have to do so much writing. At Senior High School there were more kids, that I had to watch I didn’t get knocked, they allowed me to leave class 5 minutes early to get to my next destination. I never had any major problems at school, the teachers and my peers were all pretty helpful and I never had any bad encounters where it was thought perhaps I shouldn’t have been brought up in mainstream schooling, all I know is it was the best thing for me.
I moved from the farm to a place called Rocky Bay in Perth. Rocky Bay is a centre for excellence for people with disabilities. It provides residential accommodation, nursing care and therapy services. I stayed there because I could receive the nursing care I required and they had a regular bus that could take me to Hollywood Senior High School in order for me to continue my senior schooling. There was about 100 kids in my year let alone 100 kids at Boyup Brook Senior High School. Because the school was so big ranging from year 8 to 12, I got around in a wheelchair and I felt that isolated me a bit, it was a lot harder to mix with other people. I didn’t even know a quarter of the people in my year, so I can understand what it’s like for people in a wheelchair!
My late teen’s and early 20’s I was out there like everyone else, working almost full time as my dressings only took at the most 1 hour in the mornings, and ½ hour in the evening, so I would party out with my friends whenever I wanted. I really enjoyed going out and having some drinks and dancing with my friends at night clubs, parties, whatever took our fancy. Yes sure as careful as I tried to be, I got knocked around, sometimes come home with extra blisters and skin rubbed off here and there, I know some of you might think how irresponsible of me, but hey, I enjoyed myself!
Rocky Bay provided me with opportunities I never thought possible such as being able to drive a car, something I never dreamt of being able to do. I remember asking permission from Dad to go for my licence, I think he was stunned and couldn’t believe it was possible! I had to undergo a few tests and check what adaptations I would need to the car in order for me to be able to drive and that these were possible. Just a few minor adaptations was all I needed, the main one being a cuff for my right hand which slots into a spinner on the steering wheel, and the indicator extender which brings the indicator to the left side as my left hand was free to use. The rest were just a few additions to turn knobs, pull handles a bit easier. I love being able to drive giving me a sense of freedom and certainly independence.
I have been lucky to be able to go away on holidays, my first trip out of WA was with my Grandma and Aunty for a nine day trip around Tasmania in 1991. I really enjoyed the trip and we were so lucky to have fine weather most of the way. That was back in the days where my dressings only took an hour each day.
Second trip away was to New Zealand in 1997 was more challenging being my first time overseas and for 2 weeks with my carer. My skin was very bad at the time, I had one big suitcase just for my dressing supplies for the whole trip! I had to make sure I had everything to cover all bases of what I might need, because I was away for two weeks and I wouldn’t be able to get dressings from just anywhere.
The carer and I were getting up at 4 – 4.30am every morning so we could get ready in time to have breakfast by 7am, and then get on the bus by 7.30am. That was a good trip, but very tiring. I took a big risk in New Zealand and went on the Shotover Jet Boats that go really fast and close to rocks where you think your going to hit them. Thank goodness a lady had her arm around my back to hold me on, with the 360 degree turns I’m sure I wouldn’t be here today.
Notes from Jan & Geoff Harris (Carmel’s Parents):
After completing year seven at the Boyup Brook Convent Carmel went on to the Boyup Brook Junior High School to finish up to year ten. During school years in Boyup Brook Carmel travelled about six kilometres on the school bus to and from school. She either rode her three-wheel pushbike or was taken by vehicle to the bus stop, which was two hundred metres from the house and a steep decline. To get her back up the hill Delvene got off her bike and gave Carmel a push or nudged her bike with the front wheel of her own bike. Carmel and Delvene spent hours outside on their bikes.
Some stories and pastimes of Carmel and Delvene.
- Delvene was bitten on the toe by a bee. This happened behind the machinery shed about fifty metres from the house. Carmel said “Quick get on the back of my bike and I will take you to the house”. Off they went at top speed.
- A bike racetrack amongst some lemon scented gums was another activity that took lots of time.
- Carmel and Delvene liked going to their Grandma’s place and particularly getting dressed up in old clothes along with their cousins.
- Carmel enjoyed hobbies such as quilling, macramé, photography and reading.
At about this time we decided to change to a different Specialist who advised us to send Carmel to Rocky Bay Village. While at Boyup Brook School she spent some holiday times there, which gave Carmel opportunities to meet new people and undertake fun activities while giving us a break.
When Carmel was thirteen or fourteen years old she had an operation to release her fingers. This was a difficult time for her as unfortunately within about three months the fingers were fused again to how they were before the operation. After another attempt at about twenty-five it was thought to be better just to release the thumb and forefinger on her right hand. This was much less stressful for Carmel.
There were other visits to hospital with kidney nephritis, dehydration and on-going infections.
Carmel went to stay at Rocky Bay Village so she could attend Hollywood High School for years eleven and twelve. She came home to the farm at holiday time. Carmel was top of year twelve in typing and received an award. This was a great achievement as she used the sides of her fists to type because she had no fingers. She was able to type at lightning speed!!!!
After finishing year twelve at Hollywood High School Carmel started work with the W.A.Police as a receptionist and worked there for eighteen years. Carmel still lived at Rocky Bay for about four years after leaving school. The Rocky Bay Auxiliary organized a Debutante Ball. Carmel was one of the Debs and dressed up to the nines for the special event.
Obtaining a licence and the purchase of a new car, with the help of her Pop (Grandfather), gave Carmel a huge amount of independence. In her spare time she took on selling Tupperware and after giving this up went on to become a Crystal salesperson. This was through having parties at private homes, which she enjoyed. She had no trouble in selling the products. After some time it became difficult to carry and move the display items around so she gave up the job.
In Carmel’s late teens she told us that she wanted to make her own decisions in life. We went along with this and were willing to give her advice if required. She was a very determined person, which helped her to achieve so much.
Carmel attended the first National EB Conference held in South Australia in 2003 as a guest speaker. Here is an extract from Carmel’s presentation:
I would like to tell you a bit about how I have coped with having Epidermolysis Bullosa. Something I want to share with you first of all, is that I was very excited to be attending this conference and having the chance to meet other people associated with this condition. But I also felt a little apprehensive as to how my skin would compare to other people. I guess what I decided was that it didn’t matter, the idea of the conference is to learn from other people and get new ideas from each other about how we might be able to do it better for ourselves, as we all know everyone’s skin is different.
When I was younger I used to get blisters in my oesophagus and to this day I still do, but not as many. I used to eat my food as it was served up on the plate, mind you it took me at least 2 – 3 hours to eat it, now I have the bulk of my food pureed (certainly something I wouldn’t have when I was a child) and then put through a sieve to eliminate anything that may not have blended. Because of the blistering in the oesophagus it has tightened so much I am unable to swallow the smallest thing such as tomato seeds as I may choke on them. Having my food blended does not limit my in any way from eating out, restaurants are becoming more accustomed to assisting people with special dietary requirements.
People often ask me if it is painful? Generally no it isn’t. Perhaps because I am so used to my skin being this way, I don’t know any different. Sure it can be uncomfortable and sore at times especially when there are blisters that have just come up or have been missed they can be irritating and sometimes sore especially if pressure is applied which makes them larger, otherwise I can put up with a bit of aching and soreness.
My skin has been so bad with the itch and infection that literally my whole body has been covered in blisters and sores which need to be treated with creams and dressings and that feels horrible and gooey. The extra dressings also makes me hotter and much more uncomfortable. When my skin is very bad it feels tight and sore like I want to stretch out of it. If the skin peeled from a fall or the removal of sticky plaster on me that can be initially painful especially when you first put it under water as raw flesh is exposed and is quite fresh, but after a while it settles down.
My feet are the worst areas where I get cancer areas developing. I usually get ulcers and callous’ that won’t go away and depending on how bad they are can get quite painful. If my feet are sore or painful it makes it very difficult to do anything that entails walking or just being on my feet, I put up with them as much as I can during the day. If they are sore by the time I go to bed it normally takes about an hour for them to stop aching but certainly if the pain does not ease and is absolutely unbearable I will then have to take some pain relief. Normally I know if something is that painful there must be something wrong with it. Apart from my feet I tend not to get a lot of pain as such, but everyone has their own pain threshold, whether mine is high or low I do not know, but I prefer not to take painkillers just for a little soreness, that way when something is painful, I know something such as a Panadol is going to work effectively. But needless to say one should not suffer in pain either as I know being in pain does not help with quality of life.
At 25 I decided that I would have surgery to have all my fingers released on my right hand. This had not been done for 12 – 13 years and I was having a new Doctor who had previous experience with EB patients, but not with me. It ended up 5 operations later and 6 months off work and still finding it difficult to use my fingers as they were so tender and kept breaking down. It was also during this time that we discovered I had skin cancers on my feet, so I had to have them removed as well. I found this time to be very depressing as I was unable to do anything for myself, just to sit around all day, not the kind of life I wanted.
For each year thereafter I had to have cancer areas removed from my feet, but as well as this, for the next 6 years my skin was so bad with infections and being itchy, my body blistered and broke down all over. This was the hardest time of my life, my skin had gotten worse, the more surgery I had on my feet, the sorer and more tender they were and so I couldn’t dance on them like I used to. I realised things had to change, I can no longer go out and party hard and come home any worse. I found this very frustrating and miss those times when I had more freedom to socialise with my friends. When my skin is bad I find it very hard to cope as then I don’t feel like doing much. My skin has settled down now for a couple of years but it now takes 3 ½ to 4 hours each morning to do my dressings and an hour in the evening. Sometimes when I wake up I wish I didn’t have to do my dressings, but well what can I do for me to be more comfortable they have to be done.
Over the years I have had to attend many regular appointments with doctors and be hospitalised for a number of reasons whether it be teeth extractions or plastic surgery. I hate going to hospital when I have to have the nurses look after me as they think they know how to look after my skin, that I’m doing it all wrong, when in actual fact they don’t, I’ve only been living with it since birth. I respect Doctors, they have the medical expertise which I have no knowledge, but I also expect respect from them to listen to me and discuss the pros and cons of any course of treatment I may need. I know my skin better than anyone. Doctors too are learning about what my body can handle, as even though they have knowledge of the condition every person is different. I want quality of life not to be some guinea pig to try this and that or to be hospitalised when it’s not absolutely necessary.
I used to hate going to the hospital when the nurses had to look after me, I would always have a different one each time or else they would make a student or agency nurse look after me so it got them doing something and out of their way. To ease the visits into hospital I now have my carers come in to do my dressings. This makes my hospital stay much more pleasant and comfortable as they know me and know what needs to be done and I don’t have to teach each nurse what to do. The nurse’s also don’t have the time that is required for my skin care needs, they would tend to rush and then things would not get done properly. A hospital stay can be a stressful time for me as it means I cannot be as independent as I like as well as having to contend with the surgery procedures. Because most of my skin grafts have been on my feet it means I have to be pretty much bedridden. I have to for the first couple of days have a bed wash instead of a shower, and then if I have to go for a shower I have to transfer myself keeping my feet up when moving onto the shower chair as no one can lift me or use a hoist, and if I happen to have my thumb released on my right hand at the same time, it makes things like transferring a lot harder. All of this as well as sitting/lying in the same place, or the room is too hot and stuffy all adds to the stress of my skin condition and makes me very uncomfortable. Often when I go home my skin is worse than when I went in. Once the surgery areas have pretty much healed I can start to walk again, but this is a slow process as blistering occurs from having not been on them for some time. It usually takes a couple of weeks before I’m walking normally on my feet again.
My feet have become very tender from all the surgery procedures, I am unable to stand on them for a long time or walk much distance without them getting sore and aching. A lot of the time I get around on a motorised scooter, I use it to catch the train for work, and I also have a carrier attached to the back of my car that I can just unfold and drive the scooter onto it, so I can take the scooter to any destination where I might need it, especially useful for when I go shopping. I also have my shoes specially made to fit the shape of my foot and to give adequate support and protection they need as they are made of leather and lined with sheepskin and foam with orthotics inside.
I wanted to live in the community, the help of support people to provide the daily medical requirements as well as the general household duties has greatly enhanced my independence. Not to mention having my pets around makes it all so homely especially the cats, they seem to think they have me under control! I had a say in the design of my unit and the colours and what fittings were best for me, it was fun, but also difficult at times, trying to get what you wanted and keeping within the guidelines. I designed it so there were no steps to worry about either in the entrances or shower area and also wider doorways to enable me to get around on the scooter if I had to. Building a place from scratch for the first time is all a learning experience. It was all worth it in the end, I have a lovely place in a nice area and I love having my own space and just being able to have family and friends over is great.
So that my support needs can be met I have support people who are employed by Rocky Bay and other agencies to come in and help with my personal care, specialised nursing treatment, housework and gardening, etc. This can sometimes amount to three people being in my house at one time, which takes a bit of coordination. I really appreciate them coming to support me, if this didn’t happen I certainly wouldn’t be able to live in the community. I do not deny being a carer takes a special person, I have been very fortunate to have some carers for a number of years and get along very well, as they have similar ideas to me as to how things should be done and our personalities click very well. They have gone through the ups and downs of life and how to care for my skin and at the same time getting to know each other. Having carers certainly does bring its challenges having to deal with different personalities and if they tend to do things in their own house a bit differently its very hard to train them to do otherwise. It can be quite frustrating but I like to give people a chance. Often I know when I don’t feel comfortable with someone and usually they feel the same, its then no point putting up with it and keeping them on as it only causes added stress to your life, something I do not need more of. It is also hard sometimes to have people coming into your house all the time and invading your space and privacy, some people do not understand this, especially when I have my friends and family over, I like to spend as much time as possible with them as possible, not having to worry about what the carer is doing or when she is coming that will interrupt us. It’s hard to find good carers who are willing to do the work, some people think a carer’s job is easy money, you can just sit around and do nothing and get paid for it. Because my dressings take so long it’s hard to find people who have the patience and concentration to do the dressings required. Often people find it exhausting and emotionally draining. Little do they think I have to go through this each day. One of the hardest things in living in the community is dealing with carers. I know a lot of you might be sitting back there thinking gee how nice it would be for someone to come in and do my cleaning or to pamper you sometimes. Sure I do not disagree, it is nice to have someone come in and do those things, but it would also be nice if I could do those things myself. The simple things that I wouldn’t have to teach people where things go, what needs to be done, that I could do things how and when I liked.
This condition does worsen with age, this I have already witnessed, but will I get increased ongoing support if my condition does get any worse? When I had the 6 months off work due to five operations for the release of all my fingers, I was unable to feed myself or even go to the toilet without help. I had extra help from my service provider for about one to two months, then that extra help was cut off. I was already stressed from the numerous surgery procedures as well as having to cope with not being able to do anything and now it was up to me (luckily with the help of Mum who had to come up from the farm for a couple of days) to find extra support from different voluntary organisations or friends to provide time for extra duties, the carers had no time for. I will never want to go through that again as I had no help from my service provider at all to cope with this, only to make it worse. I am not someone who just wants extra funding for the sake of it, every time I require more funding it is always a battle. I always end up having to provide specific details about my skin condition and show photo’s as people making these decisions see the name Epidermolysis Bullosa, which means absolutely nothing to them. They wonder why someone with a skin complaint can require so much assistance. I wish I could live totally independent in the community.
I had just finished Year 12 and was interested in the field of customer service, I was thinking of going to TAFE to do a receptionist course the following year. I was doing work experience at Rocky Bay when a job for a receptionist came up at the WA Police Service. I was recommended for the position by the social worker at Rocky Bay and have now been with the service for 14 years, not in the same area, but same field of work – customer service. Currently I work in the Health & Welfare Branch where we provide counselling, rehab and occupational health and safety services to assist the police employees. I love it, meeting new people and assisting people however I can wether it be the customers that come in or queries over the phone or the people in the office, it’s like a social thing for me. Part of the job is clerical administration work, providing a bit of variety. Due to my health commitments I have only ever been able to work part time, but I have been very lucky that my employer is able to adjust to whatever my needs are. I do wish I could work more hours in a day, but my health comes first and I do as much as I can manage comfortably. People sometimes ask why do I bother going to work when I can just sit on the pension. Work keeps a bit of routine in my life and something I have to get up for each day, I certainly do not like sitting around wasting my day doing nothing.
As far as I know I was brought up and treated as normally as possible in my situation, by all the people I grew up with and associate with today. This is great that in today’s society this can happen, but sometimes people need reminding that I do have a disability, that I am unable to get dressed in 5 minutes, or work full time. Some doctors expect me to at an appointment at 8.30 in the morning. Or people think I sleep in each day and that’s why I start work at midday. It is frustrating at times when I tell people it takes a few hours to get ready each morning, often it doesn’t register that yes it does take that long.
Another trip I went on recently was with a friend and a carer whom I had only met a couple of weeks before to Esperance, WA. This trip was a bit more relaxing, we drove all the way over a period of two weeks and stopped and stayed in country towns where I had never been before. All my trips have been different circumstances, but it is great to get away and meet new people and be doing something different. It’s certainly not easy organising a holiday especially when you have to make sure the showers are accessible or that I’m able to have my food blended and then there is the added cost of having to take a carer with you and being with each other for the whole time can be hard, but its sure worth it.
Last year I had the privilege of speaking at the Women on Wellness Conference in Perth and I found it quite pleasing to be able to share my knowledge I have gained through living with EB. My goal for the future is to educate people. This could be members of the general community or doctors and other health care professionals. I am aware that this education needs to take place in many different forums, large groups such as this conference or smaller informal sessions. I want people to be aware of EB and what people with this condition and perhaps people with disabilities in general have to deal with. I also want to provide mentorship for people with EB and their families to help them achieve what they can and to have a positive outlook ahead.
I have dressings and sores that are visible, unable to be covered up by makeup or clothes, yet people worry about what they look like, don’t like to go out if there is even a pimple on their face. If I worried about that, I wouldn’t be going anywhere! The trick is to like what you see, and not worry about what other people think. If they can’t accept you for who you are, they are not worth bothering about. I like to go out and meet new people, hence my work for me is like a social outing, meeting new people and helping then in any way possible. I also play blow darts socially and just generally spend time with family and friends.
Everyone has their battles to fight, some more than others, its how you deal with them that makes your life worthwhile. I want to do as much as I can for myself, the more independent I am, the better I feel. At times I wish I was able to do more for myself, but I can’t, so I make the most of things I can do. Sometimes I think how lucky I am that I can see, talk and walk, as I know many people out there are worse off than I am. I’m not going to stay wrapped up in cotton wool all my life, sure it’s not always been a happy one, but with the support of family, friends, carers, the general community and a positive outlook on life, you can be happy and make life worth living if you want to, I know I do!!
Life became very difficult for Carmel during these two years. Her health had deteriorated greatly but she was still very determined to keep working and to enjoy life.
“Everyone has their battles to fight, some more than others, its how you deal with them that makes your life worthwhile.” – Carmel
In April 2006 Carmel was nominated and won the W.A. Police Staff of the Year Award for the March quarter. This was a huge achievement. It was inspiring for her colleagues to see her strong commitment to work while facing her daily challenges involved with living with EB.
“I like to go out and meet new people, hence my work for me is like a social outing, meeting new people and helping them in any way possible.” – Carmel
In May 2006 Carmel spoke at a dressings workshop in Queensland. She took a carer with her and after the workshop spent a few days sight-seeing. Carmel and Denise enjoyed a flight south along the coast in a glider and held onto a koala and a very large python!
Carmel had been saving up to learn to fly an aeroplane. She arranged to have a test run with an instructor and flew around the Perth suburbs. She had control of the plane when taking off and during the flight. On the way back the instructor did some aerobatics (including flying upside down) which Carmel really enjoyed. Unfortunately after this flight Carmel realized that there were too many aspects of flying that she could not handle herself.
In October 2006 Carmel went to the International DebRA Conference in Austria. She was in the middle of a six month course of chemotherapy. She and a carer left for Austria the day after her month’s treatment. Nevertheless she packed in as much as possible into this trip. She particularly enjoyed her time in Salzburg, the snow and icy caves in Jungfrau and the journey up to Neuschwanstein Castle (King Ludwig II’s Castle).
In February/March 2007 Carmel travelled to Melbourne to seek advice regarding treatment. In between visits she found out the tumour had grown too much, making surgery impossible. She was extremely upset but still did not let this beat her. She continued to search for treatment and remained very positive.
She continued working for the W.A. Police up until being admitted to hospital in April 2007. Carmel still looked forward to the National DebRA Conference to be held in Sydney in June. Her goal was to meet her nephew/niece who was due in August (she had even bought a soft toy lamb in anticipation).
Carmel passed away on the 5th May 2007. She leaves behind a great legacy having touched so many people in her short life. Her dedication to DebRA will not be forgotten. Carmel’s passing has left a void in our family and we miss her very much.
“Sometimes I think how lucky I am that I can see, talk and walk, as I know many people out there are worse off than I am. I’m not going to stay wrapped up in cotton wool all my life, sure it’s not always been a happy one, but with the support of family, friends, carers, the general community and a positive outlook on life, you can be happy and make life worth living if you want to, I know I do!!” – Carmel