So I started to write this piece a year on from my last one and when I started writing I was in a good headspace, I thought I knew exactly what I wanted to say, but the more I started to write, the more I realised I wasn’t quite where I wanted to be yet, so I stopped. It is now the beginning of August, 6 months after I started, I think it’s about time I tried to write some thoughts down again. Reading what I tried to write just 6 months ago was eye opening, it’s emphasized how much life changes, emotions change and that’s ok, we can’t be happy all the time and although I am in an ok headspace today, the last 18 months have come with its mental challenges. So, 18 months on from my last piece, and I guess I didn’t really have any expectations of where I thought I would be. I still don’t think I am where I need to be, but I am trying my best to get myself there.
“I still don’t think I am where I need to be, but I am trying my best to get myself there.”
Covid continues to disrupt life plans and the longing to go home is a daily struggle, the only way I seem to cope is by staying busy and keeping as healthy as I can. I may even say I have taken this to the extreme.
Not a day goes by where I sadly don’t think about last year and what happened. For me, the struggle is with the relationship ending more so than the diagnosis. I have struggled with wanting to date, have kept very closed and when I have let a few people in, I quickly find a reason why it wouldn’t work. I have been on a few first dates but never more than that. I’m not sure if this is because self-consciously, I am scared to tell them about the diagnosis or they just aren’t the one for me. Along with new sporting commitments I found I didn’t really have the time nor was I trying to make it, so I just said to myself I wasn’t ready. Dating also bought up the usual questions, do you want kids blah blah blah, to which I am still not sure how I would bring up how the diagnosis fits into that or when I should tell someone.
Like many, the year came with many ups and down, covid threw a big spanner in the works and coming to terms with the fact it might be another 12 months + till I can return home is something I try not to dwell on but can’t help getting extremely sad and lonely about. The last 18 months has taught me not to plan or look too far in the future, you never know when you will get locked down AGAIN. On a more positive note, this time has helped me appreciate why I love living in New Zealand and I have really put myself out there to make new friends and be connected in my community through church and swimming.
“On a more positive note, this time has helped me appreciate why I love living in New Zealand and I have really put myself out there to make new friends and be connected in my community through church and swimming.”
Sport has played a huge part in my happiness in the recent months. I started to set myself goals and made sure I hit them. I always said I wanted to do an Olympic triathlon, so I made friends with some triathletes who helped prepare me, train with me and I had so much fun along the way. Covid interrupted the sporting schedule and I ended up doing my three main events one weekend after the other. It started with my first 10k marathon swim. This one was so special. I had a good friend swim alongside and pace me and the whole experience was humbling, I felt on top of the world after. This was an event I always told myself I would do and train for when I was older as I thought I would need to do A LOT more training. Turns out, if you put your mind to it, you’re capable of so much more. The second weekend was an Olympic Triathlon. Fair to say, keeping bike and running fit had been hard alongside the swimming. I didn’t fuel correctly, and the run was one of the hardest. I broke down crying at the finish line but mainly because I had achieved such a big goal and I really wanted my friends and family from back home to celebrate this success with. The third and final weekend was a half marathon in Napier. I was stoked just to finish it, but to reach a PB after the big weeks previous, I again, proved to myself that I can do anything if I put my mind to it and sport is a HUGE part of my new positive mentality and successes.
A year ago I hit rock bottom. I was told by more than 1 person I was worthless, not worthy of love, not worth the risk, that there was someone out there that is better and could offer more than I could. I recently attended a women’s night at church, another community I am trying to get more involved with and I finally realised, who are these people to make these judgements about me. Have I just wasted a year of my life mourning the loss of something that was never there to lose? I’ve lost myself over the past year. I fight each day to find her, some days I come close, I laugh, I cry, I swim, I run, A LOT. I could be surrounded by a hundred people, but still feel so alone. I’ve always been an emotional person but never to the extremes of the past year. These drastic changes in emotions are something I haven’t been used to before, the extreme ends of happiness and undiscovered sadness is quite scary. Trying to pull myself out when I am down takes getting used to, but the more I share and open up with friends, the more I realise it is totally ok to not be ok.
“Trying to pull myself out when I am down takes getting used to, but the more I share and open up with friends, the more I realise it is totally ok to not be ok.”
Quite unexpectedly my older sister decided to have the genetic test for HD recently. When she told me, I had very mixed emotions. I was stoked that she had decided to have the test as I think it’s the right thing to do but I was so nervous for her results and the outcome, I had such a bad experience I wouldn’t wish that upon anyone. It was great news; she doesn’t have the gene. Whilst of course that is the outcome we all wanted, I couldn’t help but cry and relook at my life and decisions. I don’t think ‘why me?’ because if I am the only sibling in the family who will carry it then I would choose me every time. However, it bought back a lot of horrible memories. Still not having someone by my side through this process is hard. Currently, I feel like the others can freely live their lives, get married, have kids and I am a little stuck mentally, and physically with the NZ borders still closed. It’s coming up to nearly 2 years not seeing my family and looks like it could be another year or so until I do. I know this feeling won’t last forever, but it’s one I have never felt before, and have had little guidance or support from professionals knowing how to deal with it.
Because of this, I have decided I want to raise awareness, not just for the Huntington’s organisation but for mental health. I have always considered myself to be a happy and mentally strong person, but it’s not until you hit rock bottom you realise you can’t and shouldn’t expect yourself to do these things alone. I recently attended a weeklong leadership course with 120 other people aged 22-30. Mental health was bought up in several conversations, people became vulnerable when a safe space was given to them and when people shared their stories, the encouragement it then gave others to also share was empowering and a truly eye-opening experience to see just how many young adults struggle with similar emotions but had no platform to share them. If I can raise awareness just so one more person doesn’t have to experience what I have then it’ll be worth it.
When I started writing this today, I had no idea what was really going to come out. It’s been too long since I sat down with my thoughts, and I have let them build up for too long. I have been thinking about wanting to raise money ever since I found out my test results, but now more than ever is the time to take some action. I’ve decided I will swim 100km in 10 days, 10 swimming marathons in a row to raise awareness for the charity HDYO NZ.
“I’ve decided I will swim 100km in 10 days, 10 swimming marathons in a row to raise awareness for the charity HDYO NZ.”
HDYO NZ is a voluntary organisation set up to provide support to the youth of New Zealand impacted by Huntington’s disease. Their aim is for the youth of New Zealand impacted by HD to be knowledgeable, supported, and empowered through a strong community support network and accessible information. I want to make sure no one has to go through this process alone and to show anything is possible whether you test positive or not!
Watch this space as I now try to put together a plan to make this idea an awesome reality for many!
