MY STORY.
(Written at the end of the year 2000)
It took mum a while to work out what was wrong with me. She became worried when I began to have excruciating pains in the tummy, and very very messy nappies - messier than normal babies that is!! Endless nights of screaming had mum wandering from doctor to doctor trying to find out what was wrong. Finally, after talking to yet another specialist, some more tests were done at the Royal Children's Hospital and a diagnosis of cystic fibrosis was made.Life went along pretty well as a child, blissfully unaware of the implications of the disease, while mum and dad dealt with their own fears, taking each day as it came. In the back of their minds, I guess they wondered how long I would be around.
By the time I reached high school I was facing some very difficult issues. I was living in a state of fear from what I'd read about CF and what I'd heard from other people. It hit home when for the first time I had to go to the RCH (Royal Childrens Hospital) for intravenous antibiotics because I couldn't get rid of a chest infection. Going to hospital for intravenous antibiotics becomes a routine thing for people with CF. As CF affects the digestive system, oral antibiotics are not as well absorbed in CF people, compared to normal people. So after a course of oral antibiotics, if the infection is not responding to them, treatment with intravenous antibiotics becomes necessary. Unfortunately, this means a lot of CF people end up being in and out of hospital all their lives.
Like anyone would, I did not want to be in hospital. I was in a ward surrounded by very sick CF sufferers and it made me feel worse than I really was. I was determined to get out as quickly as I could and never go back! Within 10 days I was home and well, yet I wondered more than ever if I was going to make it through my teenage years.
At 13, fear of death is a pretty serious and morbid thought for a young soul to deal with. As it turned out, I had only two more visits to the hospital during secondary school, and one was a precautionary tune-up of intravenous anti's before I started VCE. Throughout this time, a strength and courage grew within me. I began to start dreaming of goals and felt a "knowing" that things were as they should be.
Towards the end of primary school, I had talked mum and dad into buying a pony. A few years later, when I'd outgrown her, dad bought a beautiful black partbred Welsh horse called Andy. It turned out Andy had been conceived at a dear horsey friend's property of mine, Chris Milvain. She also handled Andy as a youngster. 12 years later, (at the time of writing this) I still have Andy, and I owe much of my health and healthy optimism to him. Through his unconditional love and serenity, he gave me a peace and stability that was one constant thing in my life.
My teenage years were full of fun, challenges and learning like any other teenager. Most weekends were spent competing at horse events, while I juggled homework, socialising and my health. In year 9 I auditioned for a lead at my secondary school's first musical production, and surprised myself and others when I realised I could sing. So I started singing lessons, and although it was difficult to sing with a cough, the singing exercise helped my lungs. Around the same time I started doing aerobics, which I fitted in before I caught the bus to school. I found it very tiring to find the energy at times to do all this, but my motivation was high and I kept up a pretty good routine.
In year 10 I started exploring alternative methods of dealing with my health, to help improve my energy levels and immunity, and also so I didn't have to rely on antibiotics solely to help get over infections. I go into depth about this on my "Alternative Therapies" page.
I got through VCE and I deferred a Biological Science degree so I could have a rest for a year. As singing and acting more and more became a focus for a career, I decided to audition for the classical singing course at the Victorian College of the Arts. I was accepted and four years later came out trumps with my degree for Bachelor of Music Performance in Voice.
In my fourth year of uni, I also did 2 shows with my local theatre group - "Brigadoon" and "Annie" where I had lead roles.
The year 1999 followed and I had the lead role of Calam in "Calamity Jane". I guess the decline in my health started to happen around then, without me really realising.
In August, I joined a band called “A Bit on the Side” as the lead singer (something I aspired to when I was little), and it brought a lot of happiness into my life. I was entertaining at many different places, singing Top 40 Covers music from the 60s to the 90s. But with that, came the smokey venues. Thinking that I was wonder woman, I didn’t give credit to how much damage the smoke might be doing to me. I was also travelling a lot to Melbourne, (I live near Echuca, in Victoria) singing at weddings, teaching singing, competing with my horse, and other things – and not doing enough exercise, and physio and not getting enough rest. My hectic pace began to take its toll.
By December not long before Christmas I was in hospital. To say the least I was devastated, but also relieved for I felt really rundown and was looking forward to a good rest. I hadn’t had a tune up for an infection (for which I am very grateful) for 8 years and it was certainly a quick wake up call to my lifestyle. My biggest concern was my FEV1, which was the worst it had ever been. (FEV1 means Forced Expiratory Volume - how much you can blow out and how quickly, per second. This and many other readings are taken when you have a breathing test, but the FEV1 measurement is the one they watch the most)
I had a lot of time to think while I was there – mostly about the reasons why I had landed there in the first place, and I vowed to look after myself better. Of course there was a surge of support and love from my friends and family, which always made the going a lot easier. And the team at the Alfred was wonderful – it did give me an opportunity to get to know them all a lot better, and I was really grateful for their encouragement and support. Yet, the first inklings of fear and doubt began to set in………
Christmas Eve I was let out of hospital to do "Hospital in the Home" for a week so I could be home for Christmas. I felt frail, but was very relieved to be home. I got my PICC line (an intravenous line they put in your arm which can stay for a longer amount of time than the normal canula intravenous lines they put in) out the day before New Years Eve. For New Year's Eve, I had a gig with the band in a place called Tumut in NSW– I was determined to fulfil my commitment, even though retrospectively I realise I was not well enough to have done it.
The year 2000 began, and things were going OK – my cough had flared a little since coming out of hospital but I was feeling alright. (Although I did have to go my local hospital to get stitches in my finger when my horse dumped me!)
I adjusted to my new routine of increased physio, (3 times a day with a device called a Flutter – its fantastic!) nebulised Tobramycin (antibiotic), and exercise. I found it tricky to juggle the tobramycin with the pulmozyme (pulmozyme is a daily inhaled formula to help make the mucus thinner by actually changing the DNA structure)– how was I to fit everything in! Being summer it was very hot, and the heat took quite a toll on my energy levels. I spent most of January, February and March sleeping in the afternoons by the air conditioner, after I had completed my physio and aerobic exercise.
However in the first week of January I competed in the Moama Bowling Club's “New Faces” talent quest – I won my heat during the week, and then won the Grand Final (with a sad looking stitched up finger!). I won a trip to Queensland, and $1000 spending money. The prize money, and the money I earned from the New Years Eve gig, I used to purchase my own treadmill, which has been wonderful in maintaining my exercise regime (can spit sputum to my hearts content in total privacy-not so easy at a gym!)
The night of the talent quest was amazing – my parents and some of my close friends were there to share my special moment. As I closed my performance with “Live”, I explained to the audience why I chose to sing it. I told them about my CF, and that I chose to talk about it openly to help inspire people, through my own story and through my singing. And while this was not difficult to share with strangers, it was hard to keep a level voice when I spoke of something so emotional. It was even harder when some of the audience began to cry as I sang. Winning the quest (I had entered twice before and had come 3rd both times), while the money was wonderful, wasn’t just about that – it was the fact that I had this voice, a gift I am eternally grateful for, that seemed unhampered by the tired lungs that possessed it. That I had come this far and achieved another goal in my life under difficult circumstances was certainly a moment I shall never forget.
Unfortunately, I went back into hospital not long after, as the cough flared up and the lung function dropped again. I was more resigned this time, and again looked at it from a point of view that I had another chance to rest. Though this visit, I wasn’t exhausted and felt a bit frustrated being cooped up. So I went to the Prahran gym and did aerobic classes most days as well as my routine physio in the hospital gym.
Playing the hero on the outside, the brave persona I took on was a little bit of a mask. On the inside the little demon thoughts began to play at me. I was quite frightened. I really wasn’t ready for the time to be going in and out of hospital like this. How could I possibly commit to anything long term if I was going to get sick all the time? I became frustrated - angry too. Something of which most CFs must have been through at some time. I acknowledged these thoughts but tried to let them go soon after, but they played at my mind subconsciously for a long time.
Once out of hospital, my life was still unbelievably hectic, but I could no longer maintain the pace, so I sorted through my commitments to see where I could cut things down. I ummed and ahhed about auditioning for EMTC’s (Echuca Musical Theatre Company) next show - questions like 'will I be well enough', 'what if I get sick and have to have a tune up during the show', 'can I risk letting the cast down…', ran through my mind. In the end I did audition (the day after I got out of hospital!!)– I remember I cried all the way in the car to the audition (I cry a lot!!!) because I was so happy to be out of hospital and was overcome at the prospect of seeing my “other family” (the cast is like a huge family to me). I gathered myself together, and as I walked into the reception, a cheery voice said “Hi Gen, you must be glad to be out of hospital”, and with that I lost the plot again – after being hugged and wrapped with love from my girlfriend who was there, I walked into the audition, and as the audition panel chorused “ Hi Gen, welcome back”, yet again I broke down. Not exactly good preparation for an audition! This day seemed to mark the start of incredible sensitivity on my emotional self – I have always been a sensitive person, but now even more so. Also a surge of overwhelming gratitude enveloped me – again I have always been aware of my gratitude but it seemed to take a new level, and everything in my life took a new meaning, relevance and appreciation.
I got one of the lead roles in the musical of “State Fair”, and though at times I struggled with my health, it was a very special time for me. My struggles were made a little easier, having my mum do the show too. She made an excellent chorus member, and I enjoyed trying to make her laugh onstage with silly little "State Fair" in jokes. I was especially honoured with so much love and support from the cast, and their encouragement and concern when I wasn’t doing so well, during rehearsals and performances, was amazing. Throughout the performances I was pretty unwell – my energy levels were low and my cough was hairy. But on stage it was like a veil lifted and a higher force allowed me to perform unhindered, with boundless energy and no desire to cough. Soon as I was offstage I would go to my dressing room and cough away – it was quite tiring as you would imagine!
It became increasingly obvious during the first 5 months of the year, that the band work in the smoky venues was being a major contributor to the decline of my health. So with much sadness, I gave it up. I would be doing ok, then I would have a gig, get very irritated while singing and cough during the night, and the next day my infection had flared up, and I felt like I had a hangover from hell. I wasn’t prepared to compromise my health anymore. I gave the band up during State Fair, so I wasn’t able to judge much if it was helping me, as I was still under a fair bit of stress.
The day after State Fair finished (so I was vocally and physically exhausted!) I had an audition for a show called Les Miserables, being put on by Nova Theatre Company, in Melbourne. After a call back and an anxious wait, I was then told I got the part of Fantine. I was so excited, and it seemed like another little niche in my wall of triumphs for me. The production was held at the Whitehorse Centre in Nunawading, (Melbourne) and in the end (had an extended season) we did 14 shows. Throughout the rehearsal period I had two hospital tune ups. The day after my 25th birthday,(and after I found out I got the part of Fantine) I admitted myself to hospital, as I knew I wasn't doing well. My FEV1 was not too good, I had lost about 8kgs and was feeling very frail. I was in there for about 3 weeks and managed to keep going to rehearsals. I made the decision not to tell anyone, as I didn't want to worry them and was confident in my own ability to pull myself through. (In time I did tell people and they were wonderful and looked out for me.....I accrued a lot of new "mums" and "dads" throughout the show!!)
I finally got out of hospital only to find myself with a cold, and at my checkup, my FEV1 had dropped even further so back I went for another 2 week stint. Still I was able to keep going to rehearsals.
My time in hospital was very confusing, emotional and tiring. I really had begun thinking that I had started the "downward spiral" - the supposed inevitable decline of Cystic Fibrosis.
"Les Miserables" was a great success - it was the most fabulous time of my life. I met some beautiful people, and there were a few synchronicities that I came to know of - other people within the cast that had been touched also by CF, that led to some very emotional moments. Most of all it capped off a victory for me - to have been at such an all time low, to regain my health and do such a demanding show.(actually for 1/2 the show I was able to sit down and drink herbal teas while everyone else ran around like mad things!!!)
Just recently I found out I was nominated for Best Actress for my role, which is part of the Lyrebird Awards....an awards ceremony that recognises talent within amateur musical theatre in Melbourne. For me this nomination also represents my struggle and triumph - not only for me but for my family and friends who have had a very worrying year. I am not sure what my next project is, but be sure that this body of mine is not ready to give up yet.
Through each little setback that I have had this year, a renewed sense of vitality, courage, determination and strength comes after each one. Through illness, one can acquire much wisdom – my wisdom that I want to share with you all, is that CF can either be something to fight with all your life, or you can choose to accept it as part of your life, and work with it as best you can. It need not be your enemy. Treat it like a friend – that teaches you to reach the deepest part of your soul, so that you may learn and experience more of WHO YOU ARE and your purpose on this earth. And in your darkest moments, remember that amazing person you are, and what you have done with your life thus far is special and unique. My journey has become a spiritual one, and I have reasons outside common western beliefs why chest infections occur. I encourage you to look beyond the physical signs of your body and probe deeper into the metaphysical. There maybe something that can change your health for the better that is not recognised by doctors or specialists of western medicine. Particularly in the last year or so, I have been seeking a balance between the two. Don't be afraid to try different things - as this is what has led me to be as healthy as I am now.
March 2001 March 2000
1/03/2001
Hi Everyone,
The responses I have received for my website has been awesome. Thankyou for all your e-mails and the lovely comments in the guest book. I have been really taken aback by your own inspirational stories and your honesty and trust for telling me about them. I am also so happy that I have been able to help people in ways big or small through the Internet. I have certainly achieved my goals and more by creating this site. Most of all, I ask you to keep positive and keep searching for ways to help alleviate symptoms, and perhaps one day, cure Cystic Fibrosis. And we have a wonderful resource - the Internet to share our findings.
I have been very interested to find I am not the only CFer frustrated with the use of antibiotics. I think the key to the effectiveness of them, is if you can get off them completely for a while, which not only gives your body a rest but also can make them more effective for treating less resistent bugs. Of course this is not possible for most.
I have had a fairly tumultuous 2001 so far in other respects. With improved health I tentatively started planning things and felt quite at a loss what my next project would be with singing and felt a growing frustration regarding money and career. I began dance classes in tap and street latin which I really love. I wondered if I should consider part time work, as there were quite a lot of things I wanted to do that involved large amounts of money. My parents are absolutely amazing in supporting my interests, but for a long time I have felt pangs of guilt for them still having to support me at age 25. On the other side of the fence I am so grateful that they are in the position to do this. Yet stupidly I also felt guilty that I wasn't doing more - that I would be feeling quite well and why wasn't I doing more with my time?
For the first time in my life I didn't just want to sing. For some reason my passion and zest for it had taken a holiday. I wanted something else to get my teeth stuck into. One reason I felt so drained was because of the role (Fantine) I played last year in Les Miserables. Fantine is a woman who is only kept alive because of the love of her daughter. everything she does is for her. Her dying wish, is for Cossette to be looked after. She has a strong spirit, but also is very frail, full of fear, worry and mourns her lost years in what "might have been". My soul went into that character, and a lot of her frailness, her sadness and strength I found were very close to me and similar to what I was going through . Also to do such an emotional role whilst going through a very hard time in reality took a lot out of me. I am still processing in my heart those very special 5 months I dedicated to rehearsals and the 14 shows we did.
Anyway. Back to the somewhat present! I came across a horse course in massage therapies, which sounded wonderful, and something I had wanted to do for a long time. But of course, these things cost money. I didn't want to assume that mum and dad would be happy to back me on it, so I started working out strategies in which I could do this. As there were two options to start either in March or September. I thought perhaps I could get some part time work and start saving and start the course in September, even though preferably I wanted to start in March.
Coming up with a part time job that will accommodate a CF is a pretty hard thing to find. In the meantime, Mum encouraged me to talk to Dad about finances, and although initially concerned with the workload the course would involve (2 years by Correspondence plus practical sessions), he was quite happy to help me out financially. So that was great (thankyou so much Dad and Mum!) and I hopefully start in March this year.
In the meantime, I had also started rehearsals for a show called Anything Goes in my local town, and I had got one of the lead roles called Reno. I was also teaching singing, going to Melbourne, doing my dance classes, plus more, and me once again, pushed my boundaries a bit too far in the health department.
I have found I have been feeling frustrated and sad a lot of the time, and generally feeling I just can't find a right balance with what I'm doing, and I'm not enjoying some of my decisions I've made about what to do with my time. As from past experience I know I have "X" amount of energy to give out to people and situations.
And it’s an issue that keeps coming up and up again - I am realistically aware (and sometimes need to be reminded by my body!!) of the limitations set upon me with the use of my energy because of CF. It’s just the way it is, and I accept that. But it can make life a bit frustrating and tedious at times. I admire people who can hold down 3 jobs and study at the same time. Sure they might drive themselves a bit crazy but they get there. I love being busy and sometimes hectic but it’s a pace I can't sustain. It always comes back to "you've got to look after yourself".
I'm not really sure what has prompted me to share this with you as its a bit mundane and rather boring of me to indulge in stuff like this. But I guess I'm sharing it because a lot of you probably can identify with it and then know you’re not the only one who thinks like this, and understand where I am coming from. I'm not at all coming down on what a bad hand I've been given, but it just amazes me the constant balance you seek, and readjustment you make of your life, that happens with illness. And I guess we are lucky cause we really never have a dull moment. And that’s what life is all about. It’s always changing and we are constantly growing, evolving and learning more about ourselves.
Meanwhile, a couple of weeks later! (26/3/01)
I've been very busy lately, and trying my best to get a "balance" of everything.
I'm full swing into our production of "Anything Goes" -six weeks to go, and I think we are way behind!! Reno, the character I play, as I understand it, is meant to be quite a featured dancer, but due to myself being a bit of a breathless wonder when I'm trying to dance and sing, they are making me feature more as a singer. Which is fine with me, but I wouldn't have minded throwing in a few tap moves!!
I've also been busy with my horse. Several weeks ago competed at a show, with our success of the day displayed in the above photo!! And over the weekend just gone, we competed at a One Day Event. A One Day Event for those non horsey people, involves 3 phases of disciplines which are Dressage, Cross Country Jumping and Show Jumping. Over the 3 phases, penality points are gained for faults, and the person at the end of the day who has the least amount of points wins the day! We came 3rd in the Dressage, (Andy was a bit naughty and was showing me the art of stepping sideways when you are actually meant to halt squarely and stay there until the rider says its time to move on!!) and gained clear rounds in the jumping, but so did the other two birds who got placed 1st and 2nd respectively in the dressage so I stayed 3rd!! But I still had a fabulous day. I was quite embarrassed to find that at the end of the Cross Country phase I was puffing harder than my horse was!! Quite amazing the muscles you use when in a jumping postion - it might not look like hard work, but believe me its quite a fantastic cardiovascular workout!! Andy (actually named Poplars Farm Anniversay) is a bit of a super star. After beginning competitions at age 3, he has been a successful horse in the showing ring with many Champions and Reserve Champions, and has won over 30 One Day Events, usually winning the Dressage phase too. Andy has an unnatural presence for a horse. Everywhere we go he attracts attention, people wanting to buy him or know more about him. I have always felt very privileged and grateful for Andy coming into my life. The old fella turns 15 this year - quite a partnership we have had together!
Andy and I doing a dressage test, Cohuna, December 1990.Amongst my singing and riding, I have had a few social events on too, including the Lyrebird Awards (naaa I didn't win, but our show did EXTREMELY well!!), a few parties, and catching up with my friends. I had a barbecue recently with my secondary school friends, and decided it was silly photo time, so we headed down to a local park. We found a miniature playground with houses - suitable location for a photo but we were scared the security guards were going to come!! "Quick Matty, take the bloody photo". Hence the sort of guilty looks on our faces!
Also the horse course that I talked about I am hoping to start soon. It shall be weird studying again, but I am really looking forward to the challenge.
Anyway guys, thats about March for you. Hope everyone is well, take care and talk again in April!
Andy and I after a long day at our One Day Event recently.
Mum, Myself and Dad frocked up for the Lyrebird Awards.
APRIL 2001 APRIL 2001
Andy and Gen at Kyabram ODE, Easter Monday, April 2001. April 2001
Well April has had its moments!! I've been a very busy lady, but my health is holding steady which is really wonderful.
Naturopathy
I have been seeing a naturopath (I did a long time ago when I was young), and he has given me some homeopathic and herbal drops to address various health issues, such as the obvious, like respiratory problems, energy (the lack of!), fatigue, excess mucus production etc.
There were also emotional issues (repression of old experiences and emotions) to be addressed, so he warned me that a can of worms would be opening as these issues came to the surface. I won't go into much more than that, but it has been a challenge in this area!
Since being on the drops (just over a month or so), I have noticed I need to sleep less and have a lot more endurance and stamina.
I also acknowledge that the ongoing acupuncture, (which I have twice a week) and various oral supplements are helping me too, but it's just interesting to note that I do feel much better after starting the drops.
Horseying Around
Andy and I competed at a One Day Event on Easter Monday and we won the event so that was a thrill. It was a beautiful day, and Andy was a real charmer!! I'm still puffing harder than he is when we get back from the Cross Country phase!!
Andy and Gen at Kyabram ODE recently. Well I like it!!!
Anything Goes
This is the most recent musical production I'm been involved in, playing the part of Reno. It's been a challenging process - when I got unwell in February, I really wanted to pull out, for various reasons, one being health. But the director wouldn't hear of it, and gave me an understudy, which in the long run, has given me peace of mind. In case I got sick, they had someone else ready to step in to take the lead role. It's been a challenge working out rehearsal times, as since the understudy was putting in all this time, we thought it was only fair to give her 2 shows. So between us, we have had to alternate scenes and acts so we both get a run through fairly.
Ironically 4 weeks before we were to open, our lead male had to have an operation, so we were stuck!! A lovely man named Scott Baker came to the rescue, and we were on a role again. We open in Echuca's new Paramount Theatre (the first show we have done there, since the new Theatre has opened), which in itself has been a challenge getting used to working in the new area. We open on May 19th, and so the countdown is on....I am beginning to feel a little nervous!!! Look out for photo's in the next update!!
Echuca Musical Theatre Company, is quite a unique group, as we have 2 other performers who also have Cystic Fibrosis. One is my age, and the other girl is about 13.
Other Performances
I've had a few other singing engagements....one was a Talent Quest in Melbourne where I came 4th, and I've had a few weddings to sing at as well. I also auditioned for the professional touring musical "Hair" - it was a bit of a hairy experience!! I've also been keeping up with my ballroom latin dancing, and recently did a "Salsa" workshop with a leading dance teacher from Melbourne.
This isn't really much in the scheme of things, but I think its really important that people keep hearing that people with CF do get out there and give things a go.
Working Girl!
I have started doing some secretarial work at a local physio which involves booking appt's, answering the phone, getting out and putting away files, cleaning room, computer work etc etc, so its been a real challenge but a fantastic feeling to be getting out there and giving it a go. I have 2 weeks coming up at the end of June, so looking forward to that.
So thats about it really - I've certainly got enough to keep me busy, and inbetween all of it, keeping myself well!! I have also joined my local gym, for achange of scenery, and really get my lungs back in shape, for my next hospital appt in June.
May/June Update May/June Update
Gen, pictured, in costume and ready to go in her production "Anything Goes", playing the part of Reno Sweeney, a sexy evangelist turned night club singer!!
Well, it has been a rather hectic time for me these last couple of weeks.
"ANYTHING GOES"
I recently finished the show "Anything Goes", and despite quite a lot of frustration and setbacks during the rehearsal process, the show turned out to be a lot of fun, and was well received by the audiences.
For this show, I was rather spoilt, as I had an understudy, so I didn't have to do two shows in a day. My understudy was also there in case I became unwell and had to go to hospital for a tune-up. Fortunately for me, I only got a bit of a cold, and kept relatively well throughout the show season.
My mother Jennifer was also in the chorus, so she was a big help to me helping me get in and out of 6 or so costume changes throughout the show.
Reno Sweeney is a big role, so my work was cut out for me having to sing 5 big numbers, including "Blow, Gabriel Blow" and "Anything Goes".
I'm fairly relieved to have it over, and am looking forward to having a break for 6 months from doing shows!! I'll have enough to keep me busy, including the commencement of my Horse Massage Course, working at the physio, doing Film and Tv extra's work and my horse riding, amongst social activities and updating my website!!
BENDIGO EISTEDDFOD
I recently competed at the Bendigo Eisteddfod in the Modern Vocal Section, and was delighted to win both of the sections I entered.
I sang "The First Time Ever I saw Your Face" in the Modern Open Solo section, and "Live" (my favourite!) in the Open Musical Theatre section. Mum and I were very excited and went out for tea and had a bit of champas to celebrate.
My chest was very clear and happy, and I was really happy with my performances.
So as always, I'm keeping busy, and also had my June check-up. My FEV1 level was a little down, but overall my doc was very happy with me. I've decided that a little extra work for the lungs wouldn't go astray, so have started jogging again on my tready. I'm finding this very easy, and I'm started to feel the benefits already within my wellbeing.
