My Journey

Who I am

Well I guess I start by introducing myself, and the reason I have decided to create this blog.

My name is Jesse and I’m a 22-year-old gay guy with HIV (I’ll get to that bit later).

I grew up in Canberra, Australia; literally in the same house until I was 17 years old, at which time I moved to Batemans Bay on the NSW South Coast, before returning to Canberra some 10 months later. I tried to stick it out in Canberra again but at 20 I decided it was time to get out. I have lived in Brisbane ever since.

Coming out

I came out to my friends and family at age 16. Like anyone who has come out, I have had both good and bad reactions. I have a strained relationship with some of family members and I have lost people I once referred to as friends based on my sexual preference. I guess this is all a part of the process of ‘coming out of the closet’. Overall I found my ‘coming out’ experience to be the most liberating experience of my life thus far. No longer living in fear of what people would think, what people would say… fortunately I realised at quite a young age that it didn’t matter – as long as I lived my life the way I wanted to.

Receiving bad news

Almost 12 months ago I went for my half-yearly sexual health test, just to be sure all was good. The following week I got an all clear result and went on with life as normal. Exactly a week later the rollercoaster ride began – I got a call from the doctor advising there where some concerns regarding my tests and to pop back in ASAP. 15 minutes later I was sitting in the doctor’s surgery with my then boyfriend (only a few weeks in), terrified as to what was waiting for me behind the door.

The doctor advised me that there was reason to believe I may be experiencing a sero-conversion to HIV and that I would need to have another test done 2 weeks after the original test date to obtain a conclusive result.  I was totally devastated. Like a lot of people, I had taken the occasional risk, but in the last 6 months had made an extra attempt to do the right thing – only slipping up once. That’s the reality of this virus… it only takes one time and you can be infected.

So I got another blood test done and anxiously awaited the results. In the meantime I contacted the person of concern and found out he is HIV positive.

This moment was a bit surreal for me, he was more upset then I was… I was just thankful to have some kind of closure. Within the week I had my next appointment with the doctor and was given a HIV positive result.

At this point I would like to stress that I do not hold the person who infected me responsible for my infection. I agreed to have unsafe sex and did not ask him what his status was.

Telling my family

I made the decision to inform my family almost straight away and went to Canberra for the weekend. This probably comes across as a bit strange considering I have a strained relationship with some of them. The reasons I decided to tell them were:

a) My mother already knew and I didn’t think it was fair for her to carry the burden of knowing my situation but having no one to talk to about it – I wanted to tell people about this myself, not hide behind someone else doing it on my behalf; and

b) I wanted my family to understand why I was no longer going to be the one to maintain the fragile relationships I already had with some of them – I felt that it was time for me to live my life without feeling obligated to carry the responsibility of one-sided familial relationships.

People say that telling your family you have HIV is as hard as telling them that you are gay… I would have to say I agree. I guess part of the reason I decided to tell my family was because I was hoping it would help repair our fragile relationship. Unfortunately this wasn’t the case and things are as they were prior to me telling them.

Telling my friends

I have told some friends and overall they have been quite accepting.  Some freaked out a bit though, and I no longer have any contact with those that are unable to be supportive of my situation… which, as hard as it is, makes me kind of thankful that I am no longer friends with them. After all, if a ‘friend’ can’t be there to support you, who can you really rely on?

Searching for Support

I started searching for support organisations and found that there are limited support networks available. This is the reason I have decided to put this blog together. I am hoping to help others in the same situation.

Where I am now

There have been some really tough times in the past year, but finding out I was HIV positive really put a lot of things in my life into perspective. I am able to let go of a lot of anger I had toward people – over what I now recognise as quite petty things.

I look at this as a chance to get out in the community and educate people on HIV and what it is. I have done various research assignments on HIV at school, so already have a reasonable understanding of what it is, however I am really shocked by how many people know nothing about it.

I have had some struggles. It has been quite a ride!

However, with the support of some amazing friends I am now starting to feel like my old self again. Better then that, I can offer some help to people who are infected with HIV and can educate those who aren’t, and urge them to take the appropriate precautions.

Hope in Vastitude

Through this blog, I intend to provide links and various tools to give newly diagnosed people some assistance in researching and understanding this virus. Currently I have a HIV PowerPoint presentation and a tracking sheet I use to record my results at home, which then converts them into a line graph for easy tracking and self management. You can find them in our Handy Tools page – please feel free to use them for your own needs.

Thank you

Thanks for taking the time to check out my blog. Hopefully it has been able give you some help. If it hasn’t, please feel free to contact me and I’ll be more than happy to see what I can do.

A special mention and thanks must go to Richard, Krista and the rest of the team at The Well Project. These guys have been so supportive, and I obtained much of my research from this site. Please take the time to visit them, they are a fantastic organisation with a great supply of research material. Keep up your great work guys!

__________________________________________________________________________________________________

4th July 2010

One year on….

At the time of starting this entry it was the one-year anniversary of getting my equivocal result and the rollercoaster ride began.

It was quite an interesting day.  I got through most of the day really well, and then, in the evening upon reflection started to feel pretty miserable about it all and kind of hit a wall.  I spoke with a few mates and they all offered incredibly strong words of support and it gave me the inspiration I have been looking for on what to write about in this entry… And that is going to be some words of thanks to a few people who have helped me on my journey thus far.

Jay

Jay and I started dating only a few weeks before this journey began.  I don’t know how I would have got through the first few months without his support.  I remember receiving the phone call from the doctors asking me to get in ASAP as there had been an error with my ‘all clear result’ given the week before.  I got straight on the phone to him whilst he was visiting a friend in Ipswich about 30-40 minutes away.  Amazingly (and probably very dangerously), he was there with me at the doctors in about 15 mins.

When the doctor gave me the news, Jay just held me whilst I cried and cried.  Given the short amount of time we had been together, I honestly thought that Jay would have wanted to get up and leave.  To this day, and always, I will be so thankful that Jay was there; I can’t imagine how difficult the situation would have been for him and yet he knew that all I really needed at that time was to be held.

And hold me he did.

Neither of us are the type to be all couple-y in public, yet he practically carried me to my car and sat with me for what must have been a half hour or so before going home to get some clothes and coming back to spend the night with me, where he continued to just hold me all night.  He was also with me the day I got the official HIV positive result and was again nothing but supportive and strong for me.

Due to Jay having recently done his sexual health tests and getting the all clear, and my getting an all-clear result the week prior to getting the phone call to come into the doctors Jay and I had made the decision to have unsafe sex during the course of that week. Yet upon me getting my result, he was totally focused on me, and my state of mind rather than being concerned for his own wellbeing.

Jay and I separated about 4 months later due to many reasons.  I remember it being a long day discussing our relationship – but ultimately he had his own issues he needed to resolve and I felt I needed the separation and time to deal with the HIV independently as well.  From that day to now, I can say without a shadow of a doubt that he will always hold a very special piece of my heart and he will always be on the list of my closest and dearest friends.  His standing by me through the early, and most difficult months is something that I will always love him for.  I just hope that Jay recognises what an amazing person he is and I know that I am a better person having met him, and having him touch my heart the way he has.  Thankfully Jay’s tests have come back all clear and he remains HIV negative.

Shona and Jennie

My crazy lesbian sisters!  Where would I be without that crazy pair! What a day it was when I told them of my situation.  Getting back from my meeting on the Gold Coast and taking them outside for a chat.  What a teary-eyed session that one turned out to be!  I am so thankful to have met this pair and feel a part of a family when I am so far from mine in Canberra – the support they have given me is out of this world – the way they listen and tolerate my ranting and raving is something I have never been able to do with my biological family and no actions or words will ever be enough to express my sincerest gratitude to this beautiful pair of girls.

Keir

Keir has always been like a big brother to me.  I know that if I ever need advice, a shoulder to cry on, or just someone that I know will listen without judgement – Keir is the man I turn to.  Keir and I have a very special relationship where no matter what the circumstance we have the others full support.  I know that no matter where I go in life, if I ever need help or advice, he has always and will always be there for me.

Kelly

Kelly, Kelly Kelly… where do I begin?  If it weren’t for her knowledge and support Hope In Vastitude would still be nothing more than an idea stuck somewhere in the back of my head.  She picked at my brain, guided me and unleashed a whole new side of me.

Not long before my diagnosis Kelly had her own health problems.  Working with Kel made my diagnosis much easier to deal with in the workplace, as I had someone who could relate to my circumstance with the barrage of doctors appointments and tests etc.  I am happy to report that things with her health have improved and Kel is doing great!  She has recently gone through a dramatic change since starting her own blog, Clear Blue Window.  Seeing this kind of change in a person is on the same wavelength that I am hoping to achieve with Hope In Vastitude.  To be able to help people accept the person they are, and whatever their circumstances were or are and move forward with their lives.  Thank you for all of your help with this blog, but most importantly, thank you for being you.  Don’t ever change from where you are now for anyone, as I love you, just the way you are.

Andrew

Andrew is my eldest brother.  Whilst we were close growing up, our relationship kind of ceased when I came out.  I guess he had to deal with it in his own way and I can now respect that.  When I made the trip down to Canberra to tell the family of my situation, we had made some progress with our relationship and I was probably more worried about telling him then the remainder of the family, because I was worried it would affect the progress we where making.  To my great surprise, upon returning to QLD I had the following email from him:

hi Jesse

hope you had a good trip back and are warmer

Your news came to a shock to us, we thought when you said you had news that it was good news.

i havnt stopped thinking about it, we had a look at your cd and it’s helped us understand whats happenning

we stand by your in your decision with pathology

and if your happy to let it be with the guy that you got it off , thats your call and i do understand in a way what your getting at

just thought id email you and let you know that we are a phone call away if you need anything at all or someone to talk to

we hope your patners results come back clear, let us know when you find out.

Andrew

I know it seems like a simple email, but it truly meant the world to me.  Whilst we don’t speak often, I know that I have my older brother and his partner Dot there should I ever need anything, and for that I will be forever grateful.  If you have a look at the presentation on the handy tools page you will understand what he is referring to.  The other significant point is that of all my immediate family, to this day, Andrew and Dot are the only ones to have taken the time to look at the presentation.

Steaphan

My cousin is a truly amazing human being.  He is quite possibly the most compassionate human being I have ever had the privilege of knowing.  He is a heterosexual guy that is a member of CAAH in Sydney.  I have asked him to supply a brief overview of this organisation:

Community Action Against Homophobia (CAAH) is a community organisation started in Sydney over 10 years ago. CAAH is a grassroots campaigning group, started by activists who wanted to stand against the blatant discrimination faced by all members of the Lesbian, Gay, Bi-gender, Transsexual, and Intersex (LGBTI) community.  CAAH has been campaigning for many years now on discrimination they face in fields such as LGBTI health, discrimination in human rights, discrimination in immigration, in law, and in education.  These last 2 years CAAH has been concentrating on the battle for Marriage Equality for LGBTI couples, fighting for their legal and equal right to Marriage.  In these many battles CAAH is the group behind all the major Rally’s in Sydney over the last few years. They also have recently moved a lot of their campaigning online (http://www.change.org/CAAH), launching online petitions over things such as granting a gay Bangladeshi couple refugee status, and recently an open enquiry into veronica baxters death.

CAAH also works amongst and supports a wider network of groups based in Sydney, such as Organisation Intersex International (oii) and the Sydney Beat Project.  CAAH has also been involved in Sydney’s Mardi Gras for many years, as well as most other Sydney LGBTI festivals and events such as IDAHO (International day against homophobia).

Currently as mentioned earlier, CAAH is fighting for Marriage equality, and has declared 2010 the National Year of Action, for Marriage Equality.

To be a full time student who is also so actively fighting for homosexual rights, across a range of topics is something I am so proud of him for.  I am so proud of him being a part of this organisation.  Keep up the fantastic work Steaphan.

Aunty Hugi

My aunty is such an amazing woman.  Following my diagnosis she came across a publication in Sydney called talkabout. She managed to pick up a few copies and gave them to me when we were both in Canberra visiting family.  She has been there for me 100% through everything, including me coming out and now my journey with HIV.  She is such a strong woman who I am so incredibly proud of being related to.  Like me, she seems to always put others needs before her own and like me, this seems to have bitten her on the behind on more than one occasion.  Yet she always seems to bounce right back and keep going strong.  I think of her and am immediately filled with such pride.  You keep going strong Hugi, and know, that I have always got your back and am so incredibly proud of the person you are.

Gee Gee

My awesome little ginger kitty!  It probably seems totally random for me to be thanking a cat, however my boy can always detect when I am having a down moment and just cuddle up with his daddy or become part of my shadow to ensure that daddy is always safe.  To be able to just cuddle up with him and have a cry – unload to him without being judged and to love and be loved unconditionally is such a special thing.  Thank you my little one!

There is one more person that I would like to thank and also leave nameless.  This person has been a rock for me in so many ways.  He has helped me gain a greater insight on HIV and life as a HIV positive person.  His positive attitude towards it and life in general is a true inspiration and I thank him from the bottom of my heart.

I have sought the permission of those mentioned above to use their names and share with you the support they have given me, some of them have even requested to share their stories with you – stay tuned to Hope In Vastitude for their stories, as I feel it will be a great asset to this blog for you to see just how supportive those that are close to me have been in the hope that it will show you that those that truly love you, will continue to do so unconditionally.  There are many others that have been immensely supportive that I have chosen not to share for various reasons.  I could literally continue writing for days, however I feel I have met the purpose of what I am trying to get across.

I think about how different my life might be today if I never contracted HIV, and it really makes me wonder what I would be doing with myself.  My life really had no direction to it, I was just an average guy that hung out with mates, went to work and had no real passion about anything.  I look at my life now, and the direction I am now going.  Hope In Vastitude is really just the beginning of a whole new dimension to my story.  I have received referrals to various organisations and can see myself becoming an active member of the HIV positive community to raise awareness and educate on this topic.  My life now seems to have some kind of direction and I have developed a passion for something, which is a wonderful feeling, as I have never really experienced it before.

One last thank you, and that is to you – my readers and my followers.  I am truly blown away at just how many people are looking at Hope In Vastitude.  I can only hope that I am offering them some peace of mind.

Again, Thank you!

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