Tuesday, 30 November 2010

What they say is true: You DO have to go there to come back…

I returned to South Africa nearly 3 months ago and it almost feels like I never left. My travels, the experiences and wonderfulnesses I experienced feel a little like a beautiful but distant dream to me now.

I started off in London in January, where I met two people who were both part of magnetic couples. From there I went to Thailand, jungle-trekking and island hopping, via Australia and New Zealand to Argentina. Here I spent a whole month not speaking yet strangely still understanding a whole lot of Spanish, climbing a glacier, snorkeling with sea lions and realizing for the first time that HIV doesn’t need to dominate, my thoughts, my marriage and my life, too. I whizzed through Peru and Bolivia (lots of colours, amazing food and freedom to let my mind and soul truly rest and wander). I was joined by my siblings for the three week, 7500mile roadtrip through Canada and the US, attempted kite surfing in the Dominican Republic and had my aura cleansed on the same day I was scammed out of an airplane ticket in Mexico. All in all a fantastical, life-changing, thought-provoking and liberating journey.

One of the most amazing things about this trip is the people I had the privilege to meet along the way. Many I met in passing in various countries: at train stations, in busses, while eating Pad Thai or braving my way through a Taco with way too much chili, or simply asking for directions. But some of the most important encounters I made where with people that emailed me after having read some of my blog.

First of all, it feels wonderful to know that there are people that share my experience. The insecurities over how to support a spouse, how to get support for oneself and the fear of this unknown yet powerful entity that will continue to be part of our lives whether we like it or not. I received some extremely brave and honest accounts of spouses who struggled with feeling a sense of guilt over remaining uninfected or where struggling to figure out how to deal with their partner being HIV positive, how they got infected and not knowing how they felt about it. These taboos are rarely if ever spoken about and until I heard back from all these wonderful people, I had no way of knowing if it was just me who felt all these confusing things or whether others did, too. It was an enormous relief to hear from others that were wondering about the same thing!

Unfortunately I did not manage to meet up with many magnetic couples in person, since my travelling schedule turned out to be quite erratic (I clearly hugely underestimated some of the distances involved when travelling the World). Nonetheless, it is safe to say that I no longer feel alone in this. There is a whole community of magnetic couples out there, in every country, in most cities, going through the same thing right now. And I would like to encourage anyone who is part of a magnetic couple to keep in touch and send me your experiences, just as I have and will continue to share some of mine. Trust me, whatever you are wondering about, worried about, angry about: someone else has been there, too. And even if you do feel lonely going through this, know that you are not alone.

So, after eight months of wondrous, amazing, introspective and eye-opening travel I have finally returned. Returned home, returned to my husband and, most importantly, returned to me. I never thought that I would get to a point where HIV no longer plays a leading role in the film of my life, yet here I am. I truly noticed that when, the other day, my husband and I were having a pretty major conflict about some life decision or another (well, safe to say that the Zen-like state of bliss achieved whilst travelling had a bit of a limited shelf-life upon return). But while we were dishing out and dodging the arguments, I realized that for the first time since the diagnosis, HIV played no part in it. It simply did not feature in my thoughts, my fears or even latent resentment. It had simply become a sidelined bytheway as opposed to taking centre stage. Finally, HIV who had been the ever-present mistress in our lives has been demoted to the level of an annoying relative you’re responsible for (You know, the one that criticizes your garden for being too wild or your kids for being too loud; the one you acknowledge and respect by greeting but let them be otherwise).

Obviously, being diagnosed and living with HIV is far more complex, painful and life-altering than living beside a pestilent fellow citizen. However, for me it does feel like I have, at least for now, left behind the mistress who had seeped in to every aspect of my thoughts, my marriage and my life and claimed all these things back for myself. To mess with as I please.

Happy World AIDS Day and a beautiful Festive Season to everyone. Don’t forget to look after yourselves and each other.

Lots of love,

Magnetic Mama

Tuesday, 11 May 2010

Changes in climate, altitude, landscape and perspective

It has been a long time since my last entry. I won't apologise, because the past few months have been life-changing, mind-blowing, horizon-expanding and at times refreshingly mundane, but I will try and share with you some of the reasons for my hiatus from this blog and contact in general.

Just to backtrack a little, since the diagnosis of my husband (then still boyfriend) in 2006, there had not been a day I have not thought about HIV in one way or another. Sure, it didn't help that I subsequently took on a job in paediatric HIV clinics, where it was unavoidable, but in general, I kind of had the feeling that it was something I, as a partner and loved-one, needed to face head-on. And for a good while, that was the best thing for me; informing myself, confronting my role in this (or what I thought it was), adjusting, supporting and seeking support. But then it kind of got a bit out of hand, I somehow had the feeling that I was destined for this work - I was good at it, life had somehow prepared me for it (looong before my husband's diagnosis I had worked around the topic 'HIV' in my studies, Honours and Masters theses). And it got to the point where I felt I no longer had a choice.

So I lived with HIV besides me like an imaginary friend/foe you can't ignore and whose presence you are constantly aware of, thus affecting your decisions and plans at every corner. Sometimes less, sometimes more, but you somehow adjust your life around it. And I figured that was just how it had to be.

In the last three months I have travelled across Argentina, Brazil, Peru and have currently reached Bolivia. Apart from the significant changes of climate and landscape from temperate to tropical, from sea level to 5000m altitude with snow and storms, floods (which I narrowly missed), sunburn and fresh breezes something also shifted within me. It was gradual at first, nothing groundbreaking but I started to get a different viewpoint on things. And one day, during a full-day hike, after completing the last little bit of a difficult climb to see the breathtakingly beautiful Laguna de Los Tres at the bottom of Fitz Roy mountain, I realised I hadn't seen my imaginary friend in days. That is not to say I didn't think about my husband, not at all, but HIV as that little mind-blocking, thought-occupying truth-and-perspective-blocker had not featured in my thought processes for a while.

For some time after that I began to think about different possibilities and opportunities in my life. Possibilities which had always been there but which I, having been blinded by my supposed destiny and responsibilities, was unable to even begin to consider. Like the fact that my life doesn't have to revolve around HIV if I don't want it to. Don't get me wrong, intellectually I totally knew that, (and I am aware it may sound bizarre, being the seronegative magnet) but deep down I just never believed that I had any other options, if that makes sense. And contrastingly, at no point has my husband's life revolved around his illness. It has neither stopped nor slowed him down from striving to achieve his goals professionally or personally. No, that was just something that I managed to make up for myself.

So over the following weeks I really just enjoyed my new found 'freedom' and checking my emails or blogging some more seemed like something I was not yet ready for. I was afraid that if I immersed myself in the HIV scene again, I would lose the clarity I had just so recently gained and I needed to have some conversations with myself (some out loud, I admit, while no one was listening), enjoy some unusual things (like eating llama and guinnea pig), meet new people (that did not know my connection to HIV, or anything else about me for that matter) and generally challenge myself in other ways to see that I am able to retain my insights through tougher times. I think I'm getting there.

Soooo, at the end of May I will be making my way to the US via Montreal and I look forward to meeting some of you along my roadtrip through the US in June, exchanging experiences and hopefully a few laughs as well. My road trip will take me from the East coast to the West (in other words I will cover a lot of ground), so those of you who get in touch I will contact within the next couple of weeks, to see how we can meet up as well. Afterwards I will spend some time in Vancouver as well, so if you're from there, the same applies to you.

Looking forward to it!

Magnetic Mama

Tuesday, 16 February 2010

Three countries, 6 weeks and a blog that's terribly overdue...

After spending a month travelling around Thailand, without a map, guidebook, plan or clue, not thinking about anything yet pondering everything at the same time, I have now arrived in Sydney, Australia and am ready to re-join the (virtual) world.

Since my blog post went out a few weeks ago lots of people have got in touch with me and within the space of 48 hours I literally went from feeling isolated and alone to feeling like one of many who potentially felt the same way. It was such a relief!

Before flying to Bangkok, I passed a week in London, where I met with some other magnets for the first time ever. The first one I met was Pete (all names changed), the negative pole in his marriage, who told me he had never spoken to anyone openly about his and his wife's situation. I think for both of us it was so empowering to realise that another shared similar experiences, fears and frustrations throughout the journey that comes with being confronted with HIV in this way. For example, following my husband's diagnosis I went into research-overdrive, trying to find out as much as I could and passing the info on to my husband. Unfortunately my husband's needs were different to mine and, understandably, got quite fed up with me trying to 'force-feed' the info.. Pete had been doing a similar thing with his wife who didn't appreciate it either.

I think we both realised in our discussion that we were trying to cope with our feelings of utter helplessness by arming ourselves with as much information we could possibly gather. For me it was as if the more I could know about HIV, the more I could feel in control of it. Of course, since I was still an 'outsider' in this experience, this wasn't really enough and so, by sharing it (which seems like the logical thing to do), I attempted to make it a shared experience. But I was often frustrated to realise that my husband did not concur with this sentiment. In fact, he got quite irritated after some time, which baffled me.

Rachel, the second person I met in London and who is the positive partner in her relationship, made it very clear that she didn't appreciate her husband's efforts in this regard either. She made it very clear to me and her husband that she needed to deal with things in her own way, even if it meant not talking about it, not reading about it or discussing it. In fact, she looked me straight in the eye and said: "This whole mothering thing with constantly providing information and reminding about taking meds- NOT COOL! Stop it!" So there. Duly noted.

As I am writing this I am in Sydney, Australia. Earlier today I met with someone from an NGO that also have a focus on families and serodiscordant couples as well. It was a very stimulating and interesting discussion, and it was good to hear how things are similar and different in Australia (plus I got some fab travel tips for South America as an added bonus).

This trip is bringing me into contact with lots of fascinating people and I am learning lots about them (and even more about me) every day.

Next up: One week Auckland, New Zealand, then a month in Argentina (feel free to get in touch!).

Greetings from down-under,

Magnetic Mama

Sunday, 6 December 2009

Hi everyone!

Okay, so this is me, Magnetic Mama, welcome to my blog! I am very excited to join the list of TheBody.com bloggers, and I think I might bring a slightly different perspective to the amazing bunch of people already out there. I am the negative i.e. uninfected half of a HIV magnetic couple. In my eyes (err...ears) 'magnetic' sounds so much more positive than serodiscordant because it implies attraction rather than some kind of clash (that's not to say I don't have any of those with my hubby...)

I am fairly new to this form of communication but I have somehow managed to make a Mini-Mama 'WeeMee', which kind of looks like me *burstwithpride*. The reason I am not showing my actual photo is to protect my husband, who is not open about his status and I don't want to inadvertently disclose it by proxy.

Who am I? Well I'm a 27-year-old woman, a psychologist, a good friend (at least I think so), an enormous fan of good food, movies and endless chats about everything and nothing. I currently live in South Africa with my husband, I am German by birth and I lived in the UK for a long time (confused yet?).

I have been working for a South African NGO that provides paediatric HIV services to the public, so basically I’ve been working with children, and adolescents as well as their caregivers infected and affected by HIV/AIDS.

Now that that's out of the way, what is this all about? Well, in about a months time I am embarking on a rather ambitious, exciting and frankly a little terrifying trip around the world, spanning 10 countries in 6 months all on my own. Along the way I am hoping to meet up with other couples or families in my situation or with whoever is interested in connecting with me, and here I will write down my experiences, thoughts and undoubtedly some mishaps as well.

So, if you live in Thailand, Australia (Sydney), New Zealand, Argentina, Brazil (Rio de Janeiro), Peru, Dominican Republic, Mexico, Canada or the US (especially along the Route 66) and you'd like to get in touch, that would be lovely.

Look after yourselves and each other,

Magnetic Mama

Thursday, 12 November 2009

travel bug

I am leaving South Africa in a few weeks and slowly but surely I'm preparing myself. Over the past few months I have been back and forth around what focus to to put on my trip. First of all I know that I need some time out. The question is just from what?

My work, sure - working with sick kids is very intense and then, so am I, so that's a bit of an emotionally destructive combination. My life? In the past 3 years I have almost lost and then married my husband, started and abandoned aPhD, started 2 new jobs, both in the HIV field, battled a bout of serious depression and exhaustion and had a constant and at times unhealthy obsession with starting a family. Plus, I feel the constant pressure of needing to know what I want. Unfortunately I don't. At all. If I do make a decision, I second-guess it.

So it's no surprise that I abandoned planning my trip, finding other magnetic couples to connect with, writing this blog and even deleted an entry, thinkin it wasn't interesting or worth it.

Anyway, now that the trip is drawing closer and is becoming more of a reality, I've finally got the travel bug! And somehow this is infecting (bad pun, I know) everything else, in a good way.

A few weeks ago an old friend got in touch with my husband (a story I'll elaborate on another time) who's in a similar situation to ours. They live in the UK and she is infected while her husband is negative. Since my trip starts off on that little island, I'll try to meet up with them, of course.

Shortly after via Facebook I got in touch with a 'magnetic family', also from the UK who have adopted a little HIV positive girl. The mum and I have been exchanging some emails and it's so great to share concerns and experiences!

And today I was asked if I would like this blog to be carried on TheBody dot com, what more could I ask for. I look forward to hearing from and getting in touch with magnetic couples and families all over the world.

So it looks like I don't have to know everything in advance, some things will just sort themselves out. Hmm, I think this will be a great motto for my trip: Who knows tomorrow? (Noone, so why stress - I'm feeling uncharacteristly zen right now)

Excited and not feeling so lonely,

Magnetic Mama

Wednesday, 10 June 2009

Surrounded but isolated

This map shows the world according to HIV prevalence. It was presented by the UK Telegraph with this caption:

HIV prevalence
The size of each territory shows the number of people aged 15 to 49 with HIV. The highest prevalence exists in Swaziland, where 38 per cent of 15 to 49-year-olds carry the virus. More than a fifth of people in Botswana, Lesotho, Zimbabwe, South Africa and Namibia, within this age range, carry HIV.


So this is something quite ironic. I am surrounded by HIV every single day. On any given day I speak to at least three to 20 people infected and affected by HIV. I counsel them, I offer support, I can give hope and sometimes provide that feeling of not-being-alone-in-this.

Yet somehow I feel like I am. Virtually no one I work with knows about my husband's status/ my magnetic situation. And to date I have never met a single person who is 'in my situation'. Sure, I've counselled negative parents of positive children, and even a few couples where one partner is infected and the other is not. However, working at South African government hospitals, the issues that concern my clients are usually very fundamental at the time they see me. Will I survive? How can I afford to bring my child/myself to the clinic every month? I do not even have enough food to fill my stomach, how on Earth can I get 'healthy' food? We need to have more children, what do I do?

So far I have not found any support groups in Johannesburg or even South Africa that cater for people in 'my situation'. How can this be? I live in the country with one of the biggest HIV prevalences in the world and there are NO groups for negative spouses? No support groups for people on medical aid?

I sometimes feel that since not only do I have a roof over my head, good health care for myself and my partner, as well more than just the bare necessities, I do not qualify to feel pain, to be sad and angry and qualify for some blerry support! This is clearly something I need to get over. I just wish I would find someone to bounce this stuff off. Anyone out there who feels the same?