Finding beauty and love - Testing for Huntingtons Disease.

Ever since I was 16 I thought I would die at 40. That's when I would get sick with Huntingtons Disease and that's when my life would end. I pretty much had my life planned out for this. I would have my kids young so that I was around to parent them. I would get them to an age that they could be independent and not need me and then there was a very good chance (like a flip of a coin chance) that I would get sick and die. 40 was the end. 

I knew I could get the test for HD when I turned 18, however I didn't want to do that. I was young and wanted to choose life. Testing felt like giving up hope, as I knew what the result would be. I wanted to have my kids and live my life to the fullest, knowing there was a very good chance it was going to be cut short.

There was a lot of judgement around this decision when I chose to have children. There are a lot of strong opinions and stigma surrounding passing on a destructive gene like HD. Historically they wanted to use eugenics to stop us from breeding. That was the answer to this illness. Stop families reproducing. Hence the ongoing shame so many families feel talking about this disease. 

However I felt that if I could give my kids 40 years of life that was a gift. Right or wrong that's the logic I went with to allow me the freedom to have my kids and be a mum. I was 16 when I had my first baby (which wasn't so planned!) but at 21 I planned my next 3 kids and my family.

I saw a genetic counsellor when I fell pregnant with my second child at 20. The counsellor gave me the option to get tested for the HD gene and abort the baby if it had the gene. There was no way I was doing that at this stage of my life. I just wanted my family and my kids. I wanted to squeeze as much as I could into my short life. So I had 4 kids not knowing if I carried the gene, and not knowing if I may be passing it on. My husband and I bravely faced a future of not knowing whether I would be around or not. 

Over the years though as my kids got older and they witnessed my mum getting very sick, they started asking a lot of questions. A little voice in me was really starting to worry. What if I had passed this onto them. How on earth would I cope with that guilt. How on earth would I cope with them watching me get sick. There was no way in hell they were ever looking after me like I looked after my mum.

Over the years my brothers decided they wanted to be tested. My eldest brother had his blood taken in his early 20s, but left his results in the counsellors office for 8 years. My next brother told me he was getting tested. I can remember thinking "why on earth would you all want to do this!" But for each of us it was very important at different stages of our lives to get those results. Living in the unknown can become torture. My youngest brother had his blood taken a few years later and got his results too. With each one of these testing processes it felt like a part of me was getting the test. I feel like I've been tested 4 times! With each one of their positive results I felt devastated and I lost hope in life. And then I would rise back up to keep going.

The night that I decided it was my time, my 5 year old son Lachlan asked "mum are you going to get Huntingtons?" I said "maybe honey, I was thinking I might find out. What do you think?" Thomas piped up  "I think that would be great mum. That's really cool! You will know its coming so it wont be so scary like if you didn't know"
"Mum will you be like nanna and not talk good?" asked Lachlan
I told him that wouldn't happen for a very long time. Thomas must have read my mind "I wish I had a magic wand and no more Huntingtons for nanna or mum or anyone in the world!"
(Extract from an article I did for Marie Claire in 2008)

My kids deserved to know if I was going to get sick. And I wanted to prepare them for what was going to happen to me. I started the testing process in August 2007 .

I think one of the worst things about Huntingtons Disease is watching your future play out right in front of your eyes. Whilst we are doing the testing our parent, aunts and uncles are all getting very sick. So we can see exactly what is going to happen to us. I would wonder.. Are all people exposed to the way they are going to die every single day?

I was 28 at this time and needed to know if I only had 10 years or so left for my kids. We all deserved to know the finality of that.

So I started the testing process. The test is an emotionally hellish process. There were counselling sessions to find out if I was mentally stable enough to handle the news.. And then there's a blood test with a genetics crew. Then the very worst part is the 6 week wait for the results to come back. Those weeks are torture. I washed a lot of windows in those weeks.. As sitting still is an impossibility!

I got the phone call that my results were in and my husband and I drove to Newcastle to get them. I was an angry, cranky, emotional wreck during this time. Its just fucking messy really. 2 of my brothers already knew they had it. My mum was getting very sick in the nursing home. HD had taken the relationship I needed the most in my life and now I was going to find out if my kids and I will go through the same thing?

I just wanted it over. My kids were 5, 7, 9 and 14 at this time. I just wanted to know now so I could start taking vitamins and show them that I would do everything in the face of this illness to stay well for them. I was pretty certain I already had some early symptoms with a foggy head and clumsiness. So the result was just going to confirm what I already knew, so we would face that and l would live the best life I could.

As I sat in the genetic counsellors office I was so scared. My husband and I sat down and I waited for him to confirm what we knew. If I was gene positive the results would show two sets of numbers 17 and 40 plus. I stared at the paper. There was a 17 and 17. I did not have the HD gene.  

My husband cried and cried with relief. He was so emotionally overwhelmed. I stared at the paper. I kept looking at it thinking maybe they had got it wrong. As I sat there and let the news wash over me I felt numb. How on earth could this be. I was certain I had symptoms, and certain I had it. My life was not what I thought it was. Which was terrific.. and confusing. I thought my whole life I had this and it wasn't true... 

I was stunned. My gosh, my husband and I now had a future together with our kids, which had never before been. Our kids never had to worry about inheriting this disease, ever. There was so much involved in processing that. And I would now tell my family...who were not so lucky to get this news...

As we drove home and told everyone, I felt so quiet. I was so relieved for my kids, there are no words that will ever describe that feeling. Yet as much as I knew my brothers would be so happy for me, I just wished desperately that they could have had this result. How on earth could I ring my brothers and tell them I don't have it? How could I celebrate something other people in my family were not lucky enough to receive? But as I told each of them they cheered and cried with relief.

As everyone started to celebrate, feelings of silence encompassed me. I withdrew. It just felt conflicting. How could this disease pick and choose who it would take and who it would leave behind. What exactly are we celebrating? I could very clearly celebrate my kids lives, that was clear. But everything else didn't feel so straight forward.

I remember describing it to people like I felt like there had been a car crash and everyone in my family was hurt but I survived and we are celebrating?

Or our house just burnt down and everyone I love is stuck inside and I cant get them out. I'm screaming that I want them all to get out.. but they cant...I just have to watch...

I just couldn't celebrate any of that.

So I planned that when my brothers got sick and died, I would die too. I would not do this life or this illness another 3 times over. 

But... 10 years on... that initial panic has settled and leaving my life is not an option.. my kids are now 14, 16, 17 and 22 and they often say how lucky they feel, but how bad it is for other people. We accept and talk about the conflicting nature of our fortune. 

For the last 10 years I have battled the guilt, grief and powerlessness of life in the face of HD. My mum, aunt and uncle have all passed away, now exposing us as the next generation. I have fought with hellish demons of feeling overly responsible to fix something that can never be fixed. Eventually that has to stop - hence my recent survivors guilt blog - sometimes I just have to tell guilt to fuck off. 

It is ok that I exist. 

In 2 years time I will be 40. The age my mum was when she was diagnosed as being symptomatic. After my test it took me a long time to adjust to now having a life beyond 40. I can remember when I came home after getting those results and I dropped a can of beetroot on the floor. I just looked at it and thought.. wow.. everyone drops shit. I had never had the privilege of dropping something before and not assuming it was an early symptom of HD. My brothers still live with that mind torture, and they do it profoundly well. 

Being a single mum I am so grateful my kids still have me around and I'm also glad I will be around to love my family. I have many close friends who are also gene positive with this disease, and I am so very privileged to witness their strength, courage and love, in the face of illness...every single day.

I have accepted that all I can do is love everyone. I really have no control over anything else. I cannot fix it or make it go away. But hopefully I can make life a little gentler by being here. And I can always tell stories. 

Keeping myself mentally, physically and spiritually well feels critical ... illness or no illness...  Finding love and beauty in every single day helps to keep my spirit alive ❤️

Go gently friends xox 

PS I discovered this great word the other day...

Wabi-sabi (Japanese)

"A way of living that focuses on finding beauty within the imperfections of life and accepting peacefully the natural cycle of growth and decay"

So beautiful 💜 

Dancing with self worth

"This first photo makes me laugh - I was so excited to get the professional photos from my recent trip to a Contact Dance Convergence - a week long dance event. This was mine! The look on my face says it all really about just how terrifying this was! But I did it.. I danced for 7 days in contact with other people for 12 hours a day. A lot of the time I was thinking what on earth am I doing here and how can I escape! Particularly as an introvert.. That much human contact really pushed me to my limits.. But I learnt so much about where my limits are, how to say no.. and yes!! How to face my fears about not being "good enough".. trust myself.. and dance anyway!" - Facebook post 13/9/17

This really was a huge event for me. I've never really felt like a "dancer". That was what the cool talented girls at school did! Or so I thought, until I reclaimed dancing for myself. The voice of self doubt and low self worth can still get so loud in these environments. They can make me feel like I'm on the outer of groups and tell me that I'm different to everyone else...when really I'm pretty sure we are all humans here on earth! And we were all created with the ability to connect and dance. So screw that voice!

Dance has been a huge part of my healing process after divorce. Divorce left me feeling like I had left my "life dance" with someone, who I had shared most of my adult life with. It took me a very long time to adjust to that person no longer being my dance partner. Their physical body is no longer there, their touch, support and partnership is gone. It is the death of a shared dance.

The nature of my divorce was traumatic (which you can read about in my other blog "marriage and other happily ever afters"). Infidelity does a lot of damage to self worth. I felt for a long time that someone I loved more than anybody in the world had put me in a trash can and chosen someone else. I had become invisible. I had to work very hard to get myself out of that trash can, find my self love and dance my own dance again. Mind you I had not been on my "own" since I was 17... So it took some time to find my feet.    

I felt like I had fallen flat on my face. Huge feelings of failure crept in and intense feelings of not being good enough. I put my heart and soul into my marriage and in the end it wasn't enough. I think people would have looked at my relationship and family and thought "yep they have it together" I think they would have thought our life dance was looking pretty good! I remember someone saying to me when I told them we were ending .."oh but you are like Tom Cruise and Nicole Kidman" .. yep and look at them now! I guess no one ever really knows what the next move in life may be. 

When another person is involved in the ending of a relationship, it's really hard not to feel a deep sense of being devalued, to the core of who you are. I'll never forget the way my husband would look at his new lover, my friend. The look on his face and in his eyes said it all really. I remember thinking "he does not look at me like that!". It created a powerful force within me to compete. I needed to win him back to somehow reclaim my worth (bad bad bad for the soul) Competing against a woman and against "new" love is soul destroying and an impossible task.

As much as I knew logically, that none of it really had anything to do with me not being "enough" the connection they had filled me with pain and insecurities. I felt like I wasn't sexy enough, affectionate enough, loving enough or able to make someone happy enough. So I set to work trying to be more beautiful, more sexy, and a better lover. There is something about the catastrophe of losing someone that sparks passion. I wrote thousand page letters .. desperately I even googled ways to make him fall in love with me again! Because surely google knows!  I sold my soul to try and compete with another woman. 

After months and months of doing this though I had to stop. I honestly got to a point where my body said a big whopper STOP. It was sickening. If someone does not choose me, no matter who they are, they do not choose me. It is not my job to win anyone back. People make choices. And there was something in this scene of two women fighting over a man, that I did not want to be a part of. 

Because really no matter how beautiful or sexy I made myself, the energy was always going to be ugly. Three people tearing each other apart doesn't create anything beautiful. I had to separate myself from these stories of  "I wasn't good enough" "my marriage was already over" or "it was my own fault" before they destroyed me. That voice, whether they came from other people or inside myself, was only going to do one thing.. and that was completely destroy self worth.

I knew I had to exit this toxic trap. 

So I did...and once Id overcome the practicalities of this exit, I gradually found my feet again. I spent alot of time reading and learning. I read so many books about relationships. I explored my sexuality, different types of relationships, polyamory, open relationships, singleness.. dating. I wanted to work out who I was and what creates a relationship where people feel loved, secure and free (And a relationship where an affair wouldn't happen!)

I set a goal to go on 100 dates (I'm not sure I actually achieved that.. but i've been on quite a few.. Lets call it research! ) and after many, many, many conversation with people there are so many similar themes in long term relationships around not feeling valued, listened to, appreciated and loved. And at the end of all those stories there is a very common theme around people wanting both security and freedom!  Apparently its called the "Dance of intimacy"

The dance it feels like everyone is trying to learn the moves to.

So dance has become my new place for exploring relationships and concepts of connection, disconnection, communication and the feelings that arise when someone may "leave a dance". Its given me a chance to explore how my body responds to change and movement...which has been an important part of reclaiming my body and soul back from heartbreak. Contact dance in particular is so much like any relationship. There is that delicate balance of knowing the boundaries, being connected to self.. others.. and knowing when to finish the connection with someone. Endings are a part of all dances ...relationships... and life. 

Dance has taught me that even when someone leaves a dance or it ends...

I am still enough and I am loved.

Self-worth and I will always be dancing.  

Fight or surrender

So many times in my life I feel like I have been faced with the dilemma of whether to keep fighting for what feels right or to surrender to what is. I have been confronted with endless scenarios where advocating for peoples rights and fighting injustice just feels like the right thing to do. But I have also been confronted with many situations where this fighting has eventually worn me out. Times where I feel at the end of my ability to have any power and I have to surrender. 

Fighting systems, people, injustices feels so deeply important but can get so very exhausting.  Especially when it comes to speaking up for the people who's voices are not heard or cared about. As then I have to speak louder, clearer and for much longer for people listen. 

So this is one of those stories where I would fight and fight, but then had to choose surrender over and over to survive. 

💜 

My mum went into a nursing home when she was 46 years old with Huntingtons Disease. I'd just like you to imagine that for a moment. Imagine that is you. You are 46 years old and you are going to spend the rest of your life in a nursing home with people twice your age. You will no longer have your freedoms to choose your day to day activities, what you eat or where you will go. You will be dependant on others to care for your every need. And this is your future for the next 10 years or so. Imagine. All because you inherited a gene. 

We always knew this would be a part of my mum's future but I don't think any of us really knew it would come as quickly as it did. I was 21 at the time with 2 kids. Caring for her needs was so complex. She really needed a team of people to care for her declining physical, mental and emotional capacities. But there was not one part of me that wanted her to go into a nursing home. I still wish deep in my heart this never happened. But I eventually had to surrender to this as our only option.    

Leading up to this time, I would take care of my mum once a week for my dad, to give him a break. She would come and stay over and we would go to playgroup together. Going to playgroup at the best of times as a young mum was challenging. Feeling the stigma and shame of being a young parent was enough to manage. But going to playgroup with my little kids and my disabled mum was a juggling act! My mums physical chorea movements where very visibly evident. Her arms would be waving around as she walked into the play group and I would be hoping she wasn't going to hit anyone or knock anyone over, as I juggled to get my kids inside safely. 

At this stage in life it felt like everything was all about my mum and her needs, which at times was incredibly frustrating. She looked very much like a drunk woman, which sadly would also feel incredibly embarrassing and exposing. When all i wanted to do at this age was pretty much blend into society and not be noticed. Well that was never going to happen with HD on the scene! 

Many people over the years have stopped me and asked me what drugs my mum is on. I would cringe every time and explain to them that she had a disease. I would explain the nature of the disease and what it's doing to her in the hope for understanding. 

As time went on things were getting harder and harder for my dad to care for her. I was so torn. I wanted her to be happy and I wanted her to have the best. But then I also wanted my freedom and I wanted my own life. Guilt wreaked havoc on me during this time. The responsibility of caretaking her and my kids felt all consuming. I never felt I was doing enough.. But often doing too much. 

She would endlessly call me. I'd get 20 phone calls a day with problems and issues she was having and it was frustrating. I'd often get my husband to take the call and tell her I'm busy. My patients would run low.  Her obsessive behaviors were becoming  more and more difficult to manage. I felt like I was emotionally in a washing machine! 

I remember at one stage I really just wanted to move away, go to University and leave all of this behind. My brothers had moved away to go to University and I wished I could do that.  But I felt so responsible. I felt that I had to stay and help my dad look after her. I also had my kids and partner, so I couldn't leave. So I helped my dad and created my own family. A part of me was OK with that. Another part of me had to lay dormant. 

The day we decided to place my mum in a nursing home was one of the worst days of my life. I wanted to care for my mum at home so much, but reality was it was going to be a long term caring role. Not just a few years. Maybe 10 years or more. I battled this decision and day so much.

The HD Social worker was at my house and I was crying and yelling that it wasn't fair. I was 21 years old and my mum was going into a nursing home at 46? Something about this scene was just wrong, wrong, wrong. I was so mad and upset. Surely there was something else that could be done and that people could help us. Surely there were houses for young people with disabilities! How on earth was she going to survive living with 80 and 90 year olds. It was a horrendous thought. I was so angry at the disease and the lack of supports available. I felt so much shame at our inability to give her the absolute best. She already had lost so much now she was going to lose living in her own home? I couldn't believe a nursing home is what we were going to give her for the next 10 years.

But as I raged, reality was this was the best we had.

My mum had already accepted this. She was so calm this day. Looking back I think she really didn't want anyone to be upset. What was most important to her was that she was close to her family and that we would all visit her. She loved her family so much and all she wanted to do was continue to be apart of that.  

So that is what we did. We moved her into a nursing home and for the next 12 years I would visit her there. 

The nursing home provided care for her basic needs. They provided food, shelter and physical care. My mum wasn't into bingo or line dancing that's for sure. She didn't want to be a part of any of that. She was too hard for them to take on outings, so she didn't fit the criteria for that. But they cared for her practical needs and we cared for her social and emotional needs.  This new care arrangement allowed us to continue to love her, without having the responsibility for every aspect of her care. 

So every Tuesday my husband would meet me at the nursing home, after I finished work. We would do our change over of the kids in my mums nursing home room. He would then go to work and do night shift and I would hang out with my mum.  Over the years our 2 kids turned into 4 kids and the room filled up with more and more babies toddlers and kids. My husband and I would swap our daily stories in this room, swap parenting roles, I would feed my mum ice-cream and we would share a tonne of love, laughter, hugs and tears. 

Visits were both beautiful and horrendous. My mums love, joy, connection with my kids was always beautiful. My goal every visit was to make her laugh. And she always would.

However every few months a new decline would take place and a new conversation with staff would be needed. Conversatoins about how she could no longer toilet or shower herself, to conversations about how she would now needs sanitary pads, new medications, food would now be pureed to a new texture, how difficult her behavior was etc etc etc.

So I would complete my goal of making mum laugh, I would have a conversation with the staff about her care and then more often than not, I would leave the nursing home crying. 

Sometimes mum held onto her acceptance of the nursing home. At other times she just hated it. Sometimes she was cooperative, other times she was angry hitting people and crying that she wanted to leave. She went through a stage where she was violent towards the other residence and she desperately hated living there. Everytime we would take her out for a visit she would throw herself on the ground and refuse to go back. She would fight and fight to stay home. These were heartbreaking fighting days. 

As her brain was being damaged by her illness she lost her ability to express herself verbally and she found new creative ways to get her needs met. Which often involved a floor. The nursing home was in no way equipped to deal with her needs. They didn't have the knowledge or training to care for someone with Huntington's disease. They were trained and equipped to deal with elderly people.

During this period mums behavior became so difficult they asked her to leave. I'm not really sure how you manage to get kicked out of a nursing home, but mum did.

I fought so hard against this. I was so angry that someone with a disability could be told they are too hard. I wrote letters, had meetings, cried, yelled, but none of it made any different. She was moved to Sydney, 6 hours away from us.

She was sent to a facility that was set up to care specifically for people with Huntingtons Disease. I think mum would have been about 52 at this stage and she was now one of the oldest people in this care home. I walked into her new home on my first visit to this center and I was shocked. Everyone in the room had HD. About 20 residence all looked like my mum. Peoples arms were waving around, there were some people laying on the floor, throwing food, wearing helmets, sitting in wheel chairs and trying to talk. 

It felt like a relief. I felt like we were home.

For years I had sat in a nursing home feeling different and that we didn't belong. I often felt like we were a nuisance and my mum was too hard. But here, this was exactly where she belonged. With people who knew how to care for her. With people her age. With other people with HD

The staff in this facility knew how to manage my mums behaviors, what medication she should be on, how to help her with routine. Funnily she was not violent anymore. I always felt like I had to do so much educating of doctors and nurses around how to care for her .. but here I didn't need to do a thing. Except eat the ice-cream.

Mum stayed in this facility for a few months whilst they changed her medication and stabilized her to a point that hopefully the nursing home would take her back. She went on outings, they had a fabulous coffee shop and she had fun. She was incredibly brave but she missed her family and wanted to come back.  

Over the weeks on her new medication she lost her ability to walk. This was one of the needs that the nursing home had for them to be able to care for her. They agreed she could move back to the nursing home, in a wheel chair, so she moved back in. 

As tragic as this was (and again I kicked and screamed at how wrong this was!) there was also some relief that being in a wheel chair now clearly said "this woman has a disability" which changed the way people looked at her. She was no longer a potential drug addict, or drunk, she was clearly unwell and sick. And the wheel chair spoke that for us.

Which perhaps allowed us all to surrender... again.

💜 

"Surrender is what happens when you come to the end of your power. Surrender is what happens when you have searched to the bottom of your soul and found out this truth — which is that you really can't do this thing anymore. Surrender is what happens when you don't have any more ideas for how to fix everything. Surrender is what happens when none of your survival strategies work anymore — and your playbook is out of pages. Surrender is what happens when you turn it all over to God. You release your grip on the thing. You stop white-knucking it. You stop pretending things are great when things are actually horrible. You stop putting on a fake face, or glossing over the problem, or lying. You face the truth that you are not the most powerful force in the universe. You turn it over to fate. You exhale, and let go. - Elizabeth Gilbert

Psychics...Psychologist.. and all other healers...

Yes I really did visit a psychic for the first time in my life today. I've always been so hesitant entering into that world, as I don't want to be told I'm going to die! (even though I know this is a fact for us all.. but I don't want to be told again and again!)

But it wasn't like that at all. She told me within 5 minutes of me explaining why I was there, that I should start a blog !! And at that point I was thinking.. oh goodness I just paid $60 for her to tell me what I'm already doing!

She did say a whole lot of other stuff too though.. which was good reinforcement that I'm on the right path. Which makes my soul feel peaceful. Its amazing how much my soul will scream if I'm not doing what I'm supposed to be doing. Whether that be my job, dating the wrong person, scrolling facebook for too long!

She said I need to use my stories and make things out of them.

She also cried, as she told me she knew someone when she was little whos mum had Huntingtons Disease and just how awful and terrible is. I always get scared at this point in conversation with people.. as it can go in so many ways...people can go into telling me that there are herbs that will cure it (hmmmm) that I am the lucky one not having the gene and it was "meant to be" (ummm no) that my mum "chose her illness" (oh please!!!!) or to just breathe (ahhhhh!!)

 I will never forget the time I sat with a psychologist after my Aunt had just died from HD and he told me to close my eyes and breathe! I wanted to punch him. But no I didn't do that. I sadly closed my eyes and breathed like a good client. And then felt violated and had a whole bunch of new issues to deal with after leaving. I left wondering why I was so bloody obedient and didn't tell him NOOO!!! (we could analyze that to death...power, power, power!)

So anyway.. what can happen in "helping" sessions when I see people and talk about Huntingtons Disease, is I end up educating people. I have to explain the disease over and over. Which is exhausting!!! I really don't want to explain it to another single person, but I know I will probably always have to. I sent an article to a therapist once for him to read before I went in, to avoid having to tell him the story. And he said he didn't understand why I would want him to read it. Right.. so if you have a client coming to visit you from another country would you not read up about that culture before they entered the room? Yes. Well if you have a client coming in to see you who has a disease in their family would you not read up about that disease before they come... YES!!

So helpers...read, research, reflect...be aware of your power...and whatever you do...do NOT tell people to breathe.

So fortunately this psychic didn't tell me to breathe (and I didn't punch anyone) She pulled out a beautiful card from her fancy love pack of cards and she told me to be creative.

That I can do.

"You cant use up creativity, the more you use the more you have" Maya Angelou

When my mum died...coming out of the closet

So many people have shared with me over the last few months their pain-filled stories. Which has reminded me how much sharing stories creates safety for other people to share their stories. I wonder in our culture how many powerful healing stories are hidden away in closets. Are there unwritten rules about "appropriateness" of story telling? Or are there just safe private story telling spaces? I wonder how big a role shame and fear have in keeping us all quiet about our real stories. Someone said to me the other day how great it was that I was now "out of the closet" (and not in a sexuality way.. that's a whole other story!) But in regards to opening up and sharing.. And yes it is great. It was a dark closet there for a while.

So this story is about some of the pain that can keep me in that closet .. And what happened to me when my mum died.

I tend to live with a level of pain in my heart. Being overly empathetic to everything and everyone doesn't help! I've tried so many ways to get rid of this pain, including taking anti depressants at times, as I've been so desperate to have a rest from it. I can get exhausted by its persistent intensity and it's need for attention. But honestly, trying to get rid of it never really works. Numbing it numbs everything, which then makes me feel like being a robot. So one of the tools that works the best for me, which I always come back to, is sharing stories. Sharing my own story, listening to other peoples stories, and reading stories feels like connection. Pain cannot live so intensely in connection. And really what is the point in having all these stories and experiences if I don't share them. It feels like wasted pain (and i'd be greedy to keep all that pain to myself!)

I used to share my story a lot. For 10 years I talked at Huntingtons Disease conferences around Australia and the world, telling my families story and trying to connect and improve supports for people, especially for young people. When I grew up with Huntingtons Disease I literally thought we were the only family on the planet living with this illness!  The world has grown and connected so much since then. The internet allows people to connect and share stories much more freely, which reduces one of the biggest killer to the human spirit... isolation and loneliness. If isolation and loneliness get a hold, I know what happens to me. They take me on a very dark downward spiral tunnel. They hurt my spirit and my heart. Its very hard for any light to get in down there. I have to work very hard to stay out of that dark tunnel. Telling my story is one of the ways I connect to life and light. Darkness can not exist when there is light, even just a little light.

When my mum died 3 years ago I stopped talking and sharing so much. Maybe I needed to stay in darkness for a while. I lost my confidence and passion to make change. I felt lost after experiencing the reality that Huntingtons Disease actually kills people. I mean I "knew" that. But that's very different to experiencing it. For so long this disease just took my mums abilities. For each loss in her decline there would be a new wave of grief, I was so used to that. But her spirit was always alive, even if her body and mind was leaving.

Huntingtons Disease is cruel. Over a 20 year period the person who carries the gene is unable to emotionally function as well,  decisions become jigsaw puzzles, involuntary movements take away independence (ill never forget the huge grief my mum faced when she lost her license at 42, that marked the end of freedom), there's a lot of dropping things (cups, food, pants!) eating food becomes a life threatening experience, walking becomes a dance, toileting skills are unpredictable and communication requires the skill of very good listeners. The losses are slow, endless, and inevitable. And yes, I always knew she would die one day ..but when it happened it felt so final and abrupt.

People would say to me (out of very good intention, so no judgement here if you said this to me!) but people would say "oh it must be such a relief your mum has passed away". I can understand these words from a logical perspective, because of course it would seem like a relief. Who wants someone they love to be stuck in a nursing home bed for years on end. No-one. So I get it. And 3 years on yes I now feel some relief. But at the time, every time I heard this, a piece of my heart would break. To the point I just didn't want to bump into anyone or talk about it anymore. I didn't feel relief at all. I just felt like I wanted my mum back. I didn't want my mum to die. I wanted her to get better. I wanted the magic cure she waited so patiently for.

Every time I came back from speaking at a conference she would ask the same question from her nursing home bed "cure?" and I would respond with the same devastating answer "no mum" In 1995 they discovered the gene for Huntingtons Disease and there was a lot of hope around this time that there would be a cure. She held that hope for that cure for nearly 20 years, until her death.

I think after my mums passing I had to step away from talking about this disease so much. My heart and spirit felt traumatized. Every time I would do a talk at an event I'd have days of recovery and I felt like I was stirring up painful toxic poison in my heart. So I stopped talking at events and stopped being involve in the HD community. I needed to be with my mum who was now gone, and that felt like a silent space. I needed time to be with her in new ways and reflect on her death.

There were so many times during her illness that she would ask to die. So many times she asked me to help her die. It was absolutely heartbreaking over the years having her ask to die and there was nothing I could do, other than comfort her and listen. There were so many times I wanted to help her die but couldn't. There were so many times I prayed and wished she would die.

But when she did die... I felt no relief. I just felt overwhelmed with emotion and a huge loss of both of my mums. I felt the loss of my "well" mum I had as a kid. The mum who was just a normal mum. The one who did normal mum things like read, cook and play with us. The mum who came to all our school events, volunteered at the canteen. The mum who stood up for us when we were bullied and fought against injustices. That mum died when I was 15. But there was no funeral for her.

But when my "unwell" mum died I finally got to see her again. I got to celebrate the mum she was, and honor her and all the love she gave us. AND I got to celebrate the courage, humor and beauty of my mum who had Huntingtons Disease. Both of these women lived with great strength and love. Both of them showed a huge capacity to live with courage in the face of illness and always found the capacity to find joy. Celebrating and acknowledging that felt like a relief.

And now being able to talk and share stories again feels like a relief too.

"Those with the capacity to feel great pain are also those with the capacity to feel deep joy. Those who fall hard rise gloriously" Glennon Doyle Melton

Significant men day

OK peeps, a quick fathers day post. Today is going to be freakin awesome for some and shit for some!

I know in my house over the years fathers day has invited so much misery into my home! There's so much love and pain that fathers can bring (because as we all know they too can be human, imperfect and not forfill our hopes!) So as well as bringing joy, this day can also invite anger, disappointment and letdown to the celebration! Do we really need another party like this?

A friend gave me a great idea a few years ago to try side track this in my house, as really all those difficult visitors are not really helping anyone create a fun, loving day! She suggested that I turn fathers day into "significant men day"

What a creative idea and relief!

It's so cool to know we can actually give ourselves permission to change these days in our homes to suit our families needs at different times (even if commercialism says differently!) We can honour and love all the men out there who are caring about the kids who's fathers have left, suicided, died, been violent, who have drug addictions and suffer from mental illness etc. We can honour these men who fill the gaps when our fathers cannot fill this role, for whatever pain or reason.

If we widen the idea of fatherhood to include all the men who have walked into our lives, who have helped shape us, teach us and who have cared about us in life changing ways, then maybe we can all truly celebrate this day in joyful and inclusive ways 💜

And if all else fails.. its spring .. Now that we can all definitly celebrate 😊

Teenage parenthood - The turning points in life

 Teenage parenthood - The turning points in life

Do you remember those pick a path books? My life often feels like one of those books. Where I was heading down a certain path but then something happens and before I know it I'm on a completely different path! Becoming a mum at 15 felt like one of those moments.

It was one of the many turning points in my life.

 I grew up in an alternative family and community in a place called Dondingalong. My parents had 100 acres of land and we lived in a tent and shed for a long time, while my dad built a house from trees on the property. Their goal was to live a self sustaining life on the land .. and somewhere in there they came up with a grand idea to turn their 4 kids into a band. Well at 14 rebellious me was so not going to be apart of helping create that dream. Which I have to admit I've regretted over the years.. as being a musician now looks so cool!

 However back then it did not look cool at all. While my brothers got busy practicing their instruments and creating bands I just wondered what on earth I was doing in this bizzare family and hoped that my real parents would find me soon. As surely I was adopted and this could not really be the truth of where I belonged!

To survive living with this family (who I now love very much 😉) required me to spend alot of time reading books! Books became a haven, as there I could hide, be safe and be free in other people's stories. I would dream about the day I would live in a normal house, with a normal family, doing normal things. I wanted to create my own story and dreams for my life.

At 14 my search to find love in boys increased  (yes, yes if I only I knew then this was always gaurenteed to fail!). Somewhere in me thought freedom and belonging would happen here. It seemed like a good, easy option to access being loved and to belong somewhere.

Everyone else at school looked so cool. They were great dancers, musicians, actors, they were beautiful, skinny and smart. They did performances and plays! I didn't feel like any of that. I would watch all the funky kids at school and feel like that would never be me.  So surely I could be good at boys, sex, drinking and taking drugs. Yes that I could definitely master!

And I was kind of good at it. I always had a boyfriend or three and there was always access to alcohol and drugs. I can gaurentee you though not many of my early sexual experiences were very loving. They were more like drunken degrading nights on a beach or someone's backyard, where I would wake up the next day not remembering alot and quite often be ignored by this guy!

Eventually my dream guy arrived though. I found the worst person I could find (tick) my parents would hate him (tick) he always had an ongoing supply of drugs (tick) he was older than me (tick) and he had already left school (tick). Wagging school became my new hobbie and spending days at the river with him stoned. I'd lie to my parents about where I was going on weekends, go camping with him, score drugs and have sex. It was a very self destructive but addictive path.

 Looking back I wonder what on earth I needed as that young girl. What could have lead me to a different path at this time. This relationship had become my main focus and this decision had long term consequences. My parents did everything they knew how to stop it. But the more they tried the more determination was ignited. It was dangerous and thrilling. My life felt pretty shit and rebelious me didn't care about alot.. especially not myself.

My parents eventually found out sex was a part of my life (super mad!) and my dad took me to the doctor to get the pill (ahhh humiliating!) The doctor gave me the pill and we waited for my period to come so I could start taking it.  Weeks went by waiting for that period...it never came.

The idea of being pregnant terrified me but I was always so certain that would never happen to me. Contraception wasn't a priority for me, as invincibility had become my very close friend and convinced me risks were worth taking! But...

I brought a pregnancy test from the chemist with my mum after school one day. We drove back to our house,  it was just my mum and I at home. I remember walking into the toilet, in our beautiful timber house my dad had built, with the pregnancy test packet, pee-ing on that stick and slowly watching that positive cross come up. I stared at it for a very long time. Fuck.

My mum was waiting for me in the kitchen and I showed her the test. We starred at eachother across the table (where not that long ago time- tables were the challenge!) And we cried and cried.

Eventually I rang my boyfriend to let him know. We quickly started talking about how we would build sandcastles at the beach with our baby and how we could do this. We created stories in our head of how this would all be ok  (Those sandcastle fantasies on the beach were so far from the reality that unfolded in my relationship with him).

At 15 with a positive pregnancy test in hand, huge adult decisions were now required.  I needed to make decisions that would effect the rest of my life. With no idea what I wanted to do with my life, who I was or what I loved, I had to face this. Whilst everyone at school was deciding which subjects to pick for year 11/12...  I was now deciding did I want to be a mum?

My life soon became flooded with family and friends passionate opinions about what I should do. Devastation hit and alot of peoples fears were stirred up. A decision needed to be made pretty quickly about whether to have an abortion or not. I retreated from all the chaos to the safety of my room to think a lot. The idea of an abortion was so overwhelming. It felt more overwhelming than having a baby.

After alot of thinking I walked into my parents room one night to tell them I was keeping the baby. I was so scared. I told them I wanted to try and that I would adopt the baby out if it got too hard. They agreed to help me as much as they could and supported my decision. However my mum was already starting to become unwell with Huntingtons Disease . So this support was always going to be limited. However determination soon kicked in that I could do this and my life quickly had a new focus.

Over the coming months my life became about attending doctors appointment and anti natal groups with women twice my age.. often alone...as my boyfriends lifestyle did not change so much.  He continued on his self destructive path as I prepared for my life of motherhood. I will never forget being 15 and looking at the women with their husbands in those classes..and thinking there is something REALLY wrong with me. But smart me was going to shake that off, keep attending and learn as much as I bloody could!

Honestly, at this stage in my life there was any part of me that was ready to become a mum. I had no real sense of my own identity, what I loved or who I was was. But I did know this baby needed love and I was going to do everything I could to take care of it. Which meant leaving my self destructive life behind. Being pregnant to someone who had serious drug addictions and mental illness was going to be very hard territory to navigate. But I would weave my way through it.

At school I told the principle that continuing school after year 10 wasn't possible due to becoming a mum. Shame became a huge part of my experience of telling people. Reactions were strong and feeling like a disappointment was big. I often felt like yelling at adults that this was never my dream, but I'm not sure I ever really had a dream, or that anyone had ever spoken to me about my dreams. But this was now my reality, so help me.

I improved my attendance at school, as getting that year 10 certificate now felt so important to my babies future. I finished school seven months pregnant, unable to fit any school uniforms and very glad to be getting out of that system and leaving behind the shame and exposure. Being pregnant felt very shameful and stigmatizing. I felt like a bad person, irresponsible and doomed to a life of misery. Determination was going to smash that negative stigma though and create the best possible life for my baby.

A caravan became my home for the next few months and my dad built me a shack on our property to live in. Creating my home in preparation for having a baby became my next task. I started thinking about how I would pay for the baby and what my future now looked like as a mum. My mum was starting to get mentally unwell with Huntingtons Disease, so we spent alot of time together during this time,  we took care of eachother and watched alot of Oprah whilst we waited for my birth.

I turned 16 in Dec 1994 and my baby was born in Feb 1995.

My birth was traumatic. After 24 hours of labour and thinking death was close by, a baby boy was born by cesarean. I thought being 15 and pregnant was hard. Being 16 and having my legs in stirrups while male doctors try pull a baby out (that was stuck in my pelvis!) was a whole other level of hard!

My new challenging path of learning how to breastfeed and care for a baby had been born. My 16 year old body felt like it suddenly belonged to everyone else.  The body that was once a developing, partying adolescent now had a whole new role.  There was always a pad to change, suppository to insert, stitches to check, and a baby to breastfeed! It was incredibly confronting and exhausting to suddenly have all these doctors and nurses in my life... And to now be responsible for keeping this little baby alive!

But I did.. and they eventually even let me go home with him.

 I'll never forget one of the midwives telling me as I left hospital that I had good "mother craft skills". I literally had no idea what that even meant. I remember thinking.. what craft did we exactly do??? But I knew it meant that I was going to be ok.

💜🌸 💜

When my son was 1 year old I studied an Associate Diploma in Youth Work. I then went to University and completed a Bachelor of Social Science. I was so happy to finish university at the same time as my friends from school . There was no way I was going to let being a mum stop me from having everything everyone else had.

After I finished my studies I got my first permanent job at a Family Support Service where I spent the next 10 years working with teenage parents and setting up antinatal and postnatal groups. There was something so important for me in using my experience to make life a little easier for other young pregnant women. I never wanted a teenage mum sitting in an antinatal group like I did at 15 feeling ashamed, isolated and that there was something wrong with them. I wanted them to feel connected, safe and have hope for themselves as a mum .. and I wanted to celebrate them, as young woman who's lives had now hit a turning point.

"let the beauty of who you are be what you do" Kahlil Gibran