Tuesday, 10 November 2009

Life & death

Life & Death

For me
Despite knowing I have the drugs
Knowing I will live
For now at least


Living on the borders of life
And death

However well you are
…….being HIV throws life and death into clear relief

Life is with you always
But so is death

Atripla Dreams

Atripla Dreams

Faceless dreams come down to bare
Affect how I feel
Whether waking or asleep

Its night now
……….. Atripla dreams are almost here..........

Subconscious fears that never were

Of Course
A choice between
Living and dying
I’ll take the dreams learn to cope
Better than an AIDs death

Than denying the drugs and living with fear and no hope
Atripla Dreams

Mine for Life
But thanks to them

I have my life


For those of you who do not know what it is, Atripla is the drug I currently have to take every day to stop HIV multiplying and taking over my cells and to delay the onset of AIDs.

Although it is marketed under one name and as one drug - it is in fact a combination of three very powerful drugs.

Atripla is a fixed dose combination of 600 mg efavirenz, 300 mg tenofovir, and 200 mg emtricitabine.


All very powerful drugs that effect your body at a very fundamental level - at a basic cell level, which includes your bran function too, but they do keep you alive.

And thankfully medications have improved so much since the early days of HIV medications - my heart goes out to all those - and I now know many - who have survived HIV and the 'terrible' earlier meds - many of whom can not take a modern drug like Artipla due to drug resistance built up over many years of taking the older drugs ( which are related to or derived from the modern ones in many cases so if you have been on HIV meds for years. this can cut down your treatment options drastically and Atripla is most often only for those like me who have only recently gone on meds )

And the Atripla combination is one of the most well tolerated in terms of physical side effects i.e i get diarrhea and nausea but at a much more bearable level to what other drugs may give me .

I DO NOT want to put anyone off taking this drug - or ay other HIV ARV medication .

Atripla is comparatively well tolerated and any HIV med it is far better than getting ill with AIDs related illnesses - both me and my husband have been there - my husband more than me .
And so MUCH better than dieing of AIDs

And if you do not take HIV meds - once you get to the point you need them ...........................there is no other end game but AIDs and death !! Don't fool yourself , without the HIV ARVs that is the only end.... with them you can live a healthy and relatively 'normal' life

MY message - if you have HIV - take the meds!!

And Atripla is one of the best meds we have and one of the best tolerated - but what you take is down to your medical advisers always.

But for many one of the combination's of the drugs in Atripla can give you amazing, weird and for some, frightening dreams .

It is this I wanted to write about in my poem above

Some this is so bad they can not take them at all. And have to go on less effective HIV meds.

For me the dreams are weird not frightening and while they certainly affect my waking and sleeping life - they are not usually frightening and for me it is not every night I get them .

I get them more if I drink alcohol and sadly I DO drink alcohol - if you have HIV and can manage not to drink and smoke like I do it will be better health wise

But I do not do this blog to pretend I do it all right - This is about me - WARTs and all , living with HIV !!

I can tolerate this as I prefer this to having more physical side effects that some other HIV meds may bring.

But NEVER underestimate if you do not have HIV the effect that living with HIV and taking the meds can bring.

Those of us who have HIV it is too late and unless we are in denial of taking the meds we take what we can and need to stay alive and to continue our life.

And surprisingly as it might seem from the outside may of us have very good and productive lives

But it can be an added burden to live with theses dreams - even if only intermittently in my case - that a drug like Atripla can bring.

Or living with other side effects if you are on different HIV meds, as all affect your body and mind at the deepest level

None of your life if you have HIV will ever be normal - so the best I can offer
Is never get HIV - always protect yourself if you possibly can!

But at least with the drugs you will have a life - and often a very good one


HIV Poems

I am NOT a poet!!

Never was and never will be
But thought I would have a go at writing about how it feel for me to live with HIV
Not in my usual - long winded - way
but via poetry

I will post my efforts

If anyone one else living with HIV has written poems about their HIV experience or would like to try .

I would love to post them here.

Thursday, 29 October 2009

Jenny's HIV Photography Project

Jenny has posted her request for volunteers for this herself on the HIV West Country Woman's Forum : http://hivwomenwest.proboards.com

And I just wanted to say I have met her and think it is a great project - so if any women from Cornwall and the West Country especially want to get involved please do not fear exposure or you will be treated unsympathetically - as you can remain completely anonymous and her attitude is great.

So I have decided to work with this lovely young woman in her final year of a photography degree in the Uni down the road from me who has already done some great work with people waiting for transplants and now is doing a project on people in the UK living with HIV for her final year.

Her interest... As I understand it -

She has spent time in Africa with children with HIV where she became aware of HIV and now wants to reflect - through images and accompanying text- the true picture/situation of people living with HIV in the UK.
She is happy to do it completely anonymously and if anyone agreed to be photographed she can do it in such a way that you are not identifiable. Would like to meet with people but happy just to talk on email etc.

She is at college near me in Cornwall ( Falmouth Uni) so is happy to talk to people from Cornwall but can travel to meet people depending where they are based and as she has links with Bristol and Exeter is particularly keen to meet up with those living with HIV in Bristol and Exeter, especially women.

But if you do not live in Cornwall, Exeter, Bristol, or the the West Country at all I am sure she would still love to hear your views and experiences of living with HIV in the UK. Which even if she can not include photographs based on your experience, what you say I know will inform her work.

I feel we with HIV so need to help and assist young people like this who are interested in the subject of living with HIV from the perspective of what it is actually like and what the reality is now .

As young people are our future, especially young people who are training now to have posts/positions within the media of the future

She is a lovely young woman who would do this well.

Below is her proposal I said I would pass on.

My name is Jenny Cowie and I am a photography student in my last year at Falmouth University. I am currently trying to do a project that hopes to raises awareness about HIV in more rural areas. I don’t think that the general public are aware of anything but the stigma related to HIV and AIDS. Since I began this project and started talking to people I have been shocked how much my views have been affected by stereotypes…and how wrong I have been!!

Remaining anonymous is not an issue. I would just like to meet people, hear their stories and see how they think HIV could be better represented so that it wasn’t such a taboo.

If you are interested and want to look at some of my work please go to my website http://www.jennycowie.com/ (pay particular attention to Waiting…)

You can contact me on 07817785170 or jenny.cowie@hotmail.co.uk



Tuesday, 6 October 2009

Caja -Sad circles within circles

It is good that my lovely Caja will not read this !

She will not as she has deleted me from her Facebook and has understandably long preferred not to read what I blog here.

So I feel it is 'safe' for me to post it here - I so hope because I do not want her ever to read this. This is for not her and it is NOT her concern - it is my stuff.

Sadly, when I made my life so public in order to lend support to others who suffered PNI - Post Natal Illness - unfortunately the side effect I did not predict was I made my very private daughters life public too........

Part of the problem between us is she is a very private person and I am so totally the opposite as you may have guessed!

If I was not a public person I would not be blogging my life for anyone who wishes to to read.
Caja hates this particularly about me

As if I disclose about my life inadvertently I disclose about hers . So she now chooses to tell and share with me as little of her life as possible.

Understandably as the little I know the less of Caja's life I can disclose when blogging my own

That was not fair on her and one of the reasons I can no longer go on the forum I created
for http://www.pni.org.uk
It is a never ending destructive circle between me and Caja regarding our relationship .

If I am to have her trust I need to not be myself - something I can not do.....sadly not even for her.

So we go round in never ending circles - with me getting sadder and sadder that she does not love me just as I am for what I am or despite who I am , and thus writing about my sadness online and blogging it more and more ..............

and this leads to her being less able or likely to relate to me because she is a private person who will never relate to anyone emotionally who is public about their emotions and private life

So understandably this morning Barry is not speaking to me !!
And I have to stop upsetting him like this as he is all I have left now.

As when doing a montage of our family photos for my living room I got so sad and freaked out last night and told him my life had come to nothing because my daughter does not even speak to me - and in part blamed him when in fact it is not his fault at all - he did his best and we can only ever do our best

The trouble is I really do not have a normal relationship with my daughter - and right now that is all that is important to me - that I make my peace with her and have a bit of a normal relationship with her.

For example.

She stayed here in early summer this year for 4 days - not to see us but to see her childhood & other friends. She hardly spoke to me and when she did it was basically just one word and made it plain she wanted me to stay out of her way. I tried to hug her a couple of times and she just pushed me away.
I felt so hurt it was painful

Since then - about June and it is now October!!!- I have not heard from her in any way or had a single conversation with her. I have tried .....I have MSNed her and texted her but she never replies....

I accept that she has left home - and as she pointed out a while back ............ she left home when she was 17 and is now 20 so it is about time I accepted this ......and she now lives over 260 miles away and does not want to speak or relate to me.

So I have to find a way of coming to terms with this!! - But it is tearing me apart and it is tearing Barry and me apart

I know in the cold light of day it can not be all my own fault or Barrys i.e the situation with Caja but I do know that half the problem was how angry I get when I have had a drink and that towards the later part of her life with me when she would do nothing round the house and my leg was so painful I could not do it, I was OK until I had a wine or two then I would get nasty and this drove her away - so that was so totally my fault.

But I am so sad.

I had dreams of a time Barry would be home full time - but not like this............... not due to HIV - and a time when we had paid off our mortgage and we could enjoy ourselves as a family.

I knew Caja probably would not be living at home by then but I was looking forward to lovely visits when she told me about her life and what she was doing and hugged me hello and goodbye .

Not the situation I have now that Caja does not talk to me ever

I am feeling so sorry for myself - which while this may be hard to believe from my ramblings here, is something pretty new to me as I never used to indulge in self pity - Up to about 4 years ago I just trucked on.

Monday, 5 October 2009

Oh Dear - Not much hope for us then !!!

At 56 I already have memory loss and my mum died of Alzheimer's/Dementia (they did not bother to diagnose exactly what she had - too late by then all they knew is she had lost her marbles and needed round the clock care )

So with this family history and HIV I do not hold out much hope of my keeping my my wits for that much longer. Anyway it is all too obvious to me that they are on their way out already

So I had better break the habit of a lifetime and vote conservative so at least I will get cared for in a care home if I pay £8000 without my daughter losing our family home!

: http://www.timesonline.co.uk/tol/news/politics/article6862458.ece and pay what top ups I need to.

It is my biggest fear I loose my mind and end up with HIV in a care home!!

Do not tell me I will be respected? Or that I will not even be abused - I have seen it first hand , so you will not convince me .

I worked in care homes when young and visited elderly people I know often over the years

Also both my mother in law and my own mother were in care homes and while I guess my mum got better care than my MIL neither was what you would wish for......all was lacking in so many ways

But with HIV I know that I will never be treated with respect
Neurologic Disease Facing Patients Aging with HIV

from Jules Levin

By now it's pretty clear aging with HIV and getting to over 55 yrs old is putting many patients at increased risk compared to HIV-negatives for frailty, increased neurological disorders and cognitive impairment, kidney disease, CVD, and of course bone disease and fractures.

Mortality will start to increase soon as a result of this development while we have been blindly rejoicing the success of HAART for years. BY devoting all our resources overseas we lost sight of these developments, and like turning an ocean liner around it is difficult now to get the NIH & NIAID to refocus effectively to address immediately tis time sensitive problem, if it's not too late already. the fact is currently it's estimated 20% with HIV in the USA are over 50 yrs old and by 2015 50% will be over 50. For the first time a significant portion of patients are reaching 65 yrs of age and facing increased HIV-related risk for vascular disease due to ARTs and HIV.

Mitochondrial toxicity has been present for 20-30 years for many patients. Abnormal metabolics including lipoatropy are threatening to cause neurologic disorders for older patients.

Frailty and gait disorders are emerging in older patients and in MACS. 60% of patients at 45 yrs old on average have osteopenia and 15% osteoporosis, isn't that stunning. It is time not to say we are aware of this, as researchers are saying, but it is time to declare an EMERGENCY situation before it's too late, it's already very late to or too late for many patients to benefit from research in this area.

What is the NIH thinking, where is leadership? Researchers, doctors, patients, and advocates should raise their cries for a declaration of emergency to address this NOW! Let me briefly mention HCV coinfection. 10 years ago I raised discussion about this problem that 30% had HCV in HIV, that 80% of IDUs had coinfection, that we were ignoring the needs crying out for greater attention. HCV became the leading cause for death and hospitalization besides AIDS. This problem persists, patients have been dying of end stage liver disease and the Federal government and advocates never launched a proper response. Will the same thing happen regarding aging?

Neurological Impairment Persists Despite HAART: "adjunctive therapies needed" - (08/29/09)

We need a proportional response to the level of problem we face
"The results of this study extend previous observations indicating that current HAART regimens are inadequate to treat HIV-related NC"...."These findings indicate that patients with more severe memory impairment and executive dysfunction are more likely to remain neurocognitively impaired despite HAART"

Mechanisms of Neuronal Injury and Death in HIV-1 Associated Dementia - (10/24/08)
Infection with the human immunodeficiency virus-1 (HIV-1) and acquired immunodeficiency syndrome (AIDS) remain a persistent and even growing health problem worldwide.

Besides its detrimental systemic effects on the immune system, HIV-1 seems to enter the brain very soon after peripheral infection and can induce severe and debilitating neurological problems that include behavioral abnormalities, motor dysfunction and frank dementia.

( yes I feel have this already can feel it it is so sad )

Infected peripheral immune cells, in particular macrophages, appear to infiltrate the CNS and provoke a neuropathological response involving all cell types in the brain. Both viral and host factors, such as the viral strain and the response of the host's immune system, strongly influence the course of HIV-1 disease.

Moreover, HIV 1-dependent disease processes in the periphery have a substantial effect on the pathology developing in the central nervous system (CNS), although the brain eventually harbors a distinctive viral population of its own. In the CNS, HIV-1 also initiates activation of chemokine receptors, inflammatory mediators, extracellular matrix-degrading enzymes and glutamate receptor-mediated excitotoxicity, all of which can activate numerous downstream signaling pathways and disturb neuronal and glial function. Although there have been substantial improvements in the control of viral infection in the periphery, an effective therapy for HIV-1 associated dementia (HAD) is still not in sight. This article will review recently identified injurious mechanisms potentially contributing to neuronal death in association with HIV-1 disease and discuss recent and prospective approaches for therapy and prevention of HAD.

"Mood changes approaching the extent of disorders are one of many problems associated with HIV-1 disease"

(God mood changes - tell me about it!
I have suffered this for over 7 years now! Yes you may say it might not be due to HIV , but I think it is . And does it matter what it is due to, I am suffering this and it is awful for me right now as I am all too aware it is happening to me right now )

"Neuronal death by apoptosis appears to be one of the hallmarks of neurodegenerative diseases including HAD"
"While HAART has tremendously improved the treatment of HIV-1 infection and disease in the periphery, an effective pharmacotherapy for HAD (HIV-associated dementia) is still not available."
"HAART is unlikely to prevent the entry of HIV-1 into the CNS"

"Neuronal damage and loss has been observed in distinct brain regions, including frontal cortex"......"signs of neuronal death were not clearly associated with viral burden or a history of dementia"...."aging-associated amyloid accumulation with Alzheimer's-like neuropathology"..... "Altogether, it seems that a vicious cycle of immune dysregulation, inflammation and BBB dysfunction is required on the side of the host to allow sufficient entry of infected or activated immune cells into the brain and to permit neuronal injury"
"These findings suggest that inflammatory cytokines, including TNF-aand IL-1beta, may have important regulatory roles in HIV-associated neuropathology"

The prevalence and incidence of neurocognitive impairment in the HAART era ACTG Research (08/30/07)

Even with HAART therapy, our data suggest that there is a significant subset of subjects on ALLRT who have mild-to-moderate neurocognitive impairment, and a subset that develop impairment after starting HAART. Additional studies are needed to understand the mechanisms behind neurocognitive impairment and to develop strategies to prevent and treat this condition."

HIV and Aging: The Long-term Consequences of Successful Antiretroviral Therapy - (09/11/09)

Study in Neurology journal (Aug 2008) Reports Alzheimers Appears to Precede Frailty and Study in Jnl of Geronotology (2007) in the MACS Cohort Reports Risk of Frailty Higher in HIV+ vs HIV-; is early onset of Alzheimers or some other brain or cognitive dysfunction related to early onset and higher rates of frailty among HIV+? - (06/08/09)

Higher frequency of dementia in older HIV-1 individuals The Hawaii Aging with HIV-1 Cohort - (11/18/08)

Dementia with features of Alzheimer's disease and HIV-associated dementia in an elderly man with AIDS (case study) - (05/13/09)

Neurologic Complications of HIV Disease and Their Treatment
The widespread use of ART has led to a decline in the more severe neurologic complications
of HIV, such as HAD, but people living with HIV continue to ...

HIV-1 Infection Is Associated With an Earlier Occurrence of a ...
"We examined whether the FRP was more likely to occur among individuals with comorbidities of cancers and neurological disorders, ascertained according to ...

Neurological/Cognitive Impairment on HAART: 50% on HAART have ...
Many factors likely contribute to ongoing neurologic complications despite the ability of current drugs to profoundly suppress viral replication. ...

Sunday, 14 June 2009

Yurts & Yurting again today

Yet another really busy day!

My sister arrived last night for a visit, as did new guests for the Yurt, we have new guests arriving today for the flat and today we have to put up the other Yurt to act as a marquee for my daughters friends wedding/hand fasting : http://en.wikipedia.org/wiki/Handfasting

I am now wondering if we did the right thing in embarking on this Yurt letting business in addition to letting out our flat?

As neither of us feel that well and we constantly have so much to do. When I first suggested it I felt that it would be a positive thing to do to run a small holiday letting business from our smallholding because as well as the extra income to supplement Barry's pension both of us are people who like to work and have a purpose, especially Barry and the holiday lettings are really his job not mine and we felt that to have this would extend our lives and well being.

But neither of us feel well enough to work outside the home for especially for an employer who might not understand when we have days we just can not function! To have a job and then let some one down some days would put us under more stress that we just do not need.

My difficulties are more due to mental/emotional health which is struggling as I still have not come to terms with what having HIV means for us and the rest of our lives, and I worry constantly about the possibility of Barry getting really ill again or even dying and leaving me on my own -

Despite all I love him so much and have for the last 30 years that he will die before me and horribly of AIDs, this is my biggest fear and dread!!

I also struggle due to my existing disability caused by my horse riding accident - some days I walk fine but I still have some really bad days especially in the winter. So for me it is others things than having HIV that make me not feel able to work outside things I can do on my smallholding. As I am physically healthier now than I was before I realized I had HIV and started the HIV antiretrovirals. Although having HIV does affect me too as I have med side effects the worse being constant diarrhea and nausea, dizzy spells and tiredness. And I now have problems with high blood pressure and high cholesterol for which I am having tests to see what can be done and what medication I need ( this is possibly due to the HIV meds, but what choice do I have it is take HIV meds or die of AIDs.

Some people I talk to seem to thing that this is not so, that some how people with HIV just do not die of AIDs now- btu the facts are - IF YOU DO NOT TAKE HIV MEDICATION EVENTUALLY ALL WITH HIV WILL STILL EVENTUALLY DIE OF AIDS!!

It is only the new very effective meds that mean we live longer and even then it is not guaranteed!

.............and I am not looking forward to going on any more medication - I hate even taking the HIV meds!!

However I did not have AIDS like Barry nor was I ever as ill as him - yet!- and I have less side effects than him to the drugs.

He gets terrible rashes, weakness, severe fatigue which means he often has to sleep in the day and goes to bed at around 8pm and his weight is so low now his tiny jeans, size 28, fall off him ) sometimes wish HIV made ME lose some weight!! I have put it on especially around my middle )

but he likes to have something to do

But I am beginning to wonder if it was a good idea and we should have just tried to relax and enjoy our lives without this pressure?

Because it has actually been one stressful thing after another.

First making the facilities like the toilet shower and the kitchen was a hard slog, mostly one that Barry did and took him all winter - and that was with him working everyday when he could.
Then the Yurt was not a simple to put up as we were told and we had severe probelms with water getting in which we have now solved, but it took us a while to work out how to solve them.

Since everything has been up we constantly have problems to deal with, Barry calls them teething problems but I am not so sure.

The gas boiler for the shower failed the morning some guests were due and we had to get a new one and Barry had to fit it in a couple of hours before the guests came, then the batteries for the toilets and 12 volt lighting were not holding their charge, not to mention high winds a couple of times nearly blew the yurt down!!!

As well as all this we have in the last month had car problems - still have Barry is trying to fix the car today - our fridge freezer broke a week pasts its warranty ended and we had to replace it, various other things have broken in the house and needed maintenance or repair. We still have 9 acers of land to maintain and have had to do fencing and cut back bracken and of course Barry has to cut the grass and maintain the outside areas for the lettings.

And of course as well as all this my older brother committed suicide!!

  • So we are both feeling exhausted now and I am truly wondering if the Yurt was a good idea?

But it is too late for this year as we have bookings until September so we have to do it this year at least and we have promised to put the second Yurt up for this handfasting, so we had better get on with it!!

Saturday, 13 June 2009

There is no smoke without fire - or is there?

Why is it that since I have had HIV I am not believed that I have been totally sexually faithful to my husband of over 25 years, am not a drug user - well did a few things when a young woman but not anything for over 30 years - and have never taken any other risks for HIV etc?

Yet before I found I had HIV no one had any difficulty accepting that while it is not that common theses days I have NEVER been unfaithful to my husband. So many said I was so lucky to have a relationship whereby I was never tempted ( they were wrong I was certainly tempted but just never did it!! I always just said no!)

But since I have found I have HIV I am so often asked 'are you sure'?

Even - and often - by others who have HIV!!!!!!!!

Of course I'm sure!!
HIV does not change the facts of my life - and does it matter - except to me, that I was faithful ??

It is not that I feel that I am somehow different from any others who have HIV.

I truly believe that HIV is not a matter for blame or fault - it is just a virus.

  • But I just wonder why before I found I had HIV no one questioned my truthfulness in that I said I have never had sex with anyone but my husband for 25 years +
  • it was not a matter of pride or morality - Just a FACT!!

Having HIV does not alter that and I just want to be believed when I say things that are true.

And I have always been a totally truthful person. I have other faults but not telling the truth is not one of them.
So I can only assume that this lack of belief of my faithfulness to one person - yet I live with HIV .............

..............can only be put down to the blame culture around HIV? That somehow if you have HIV you are to blame in some way for having got HIV.

It does not matter how you got it - it is just a virus!!!

I do not believe in 'good AIDs/HIV & bad AIDS/HIV
If you have HIV you have a virus
That's all
And no virus has any questionable or otherwise human values.

And a virus in itself does not carry stigma.

Only humans do.

Thursday, 21 May 2009

Are you Positive?

I do not know about you but I lead my life in a completely positive way

Even though I am HIV positive

Our local college - the one my own daughter attended and I taught as a lecturer until 2003
Is putting on a play about HIV

Great is all I can say.

If you live in Cornwall why not come to this?

That others apart from us in Cornwall do have some awareness and care for us who are living with HIV and or AIDs is to me wonderful .

As for so many it is an issue that too often is thought that

  • - is not my problem

But it is or if not it could be for your kids in the future!!

- as you know I have been quite ill and my husband has had AIDs but the latest HIV meds has dragged him back from this .

The message NEEDS to get out

HIV is not just an issue for those who live in other countries, like Africa etc nor is it only an issue for those who live in cities in the UK

HIV is here!!
It is here in Cornwall - and all parts of the UK

Many live with it even in beautiful and rural counties like Cornwall

But due to the huge stigma , so few in rural counties are open about living with HIV
I am open about having HIV and YES living in Cornwall I am sticking my neck out to be so openly living with HIV.

But I think what the heck??!! I have been through far worse already in my 56 years of life.

I have had a really difficult life up till I acquired HIV in my 50s - AND I AM NOT NOW GOING TO KEEP QUIET about this one

I am so glad john found his sister before he died

He always wanted a family that was his own - and not just us, his step siblings.
Please click on the image to read it properly!

I dare not even ask if Johns sister - who was adopted and who may even be my sister too, I will never know - knows about his death and that he killed himself.

Wednesday, 20 May 2009

My Tribute to an Inventor of the PC - John Reed

My brother John was part of the IBM team that invented this piece of Technology you are reading this blog through - what an achievement - so few can match this?

No one really can know why John - my brother - committed suicide today I guess

- but having grown up with him I think I actually may have some idea!
But worried to tell his family -

But probably I am wrong as no one really knows but him.

But I do not know if anyone who was not there could understand what we went through as children .
And it does not matter - what matters is his relationship with them.
His note apparently was brief, part of it was

'I love you all '

And that he loved them is all that matters in the end

If anyone has the time to look at the videos on his site before they go down .

As he is not here now to service his site - in his memory I will see if I can keep it on


There are pictures and videos - Videos here:
This is a happy one of him jetskying : http://www.reedfamilyalbums.co.uk/ReedFamilyAlbums/videoalbums/1970/Cine1.wmv

- that site says it all really about his life from the 70s onwards.

Despite the traumatic childhood both he and I to a degree, went though, he led a full life and very useful and productive life . But I think I do have a good understanding of why he might have ended it now.

I was very angry at first - but not now.

Computer Science Degree - Cambridge 1960s

  • His life was full of achievements,
    Most I fear will never be recognised

    He was one of the first modern computer scientists that EVER existed - he was a student at Cambridge on what I beleve to be the first computer science degrees ever in about 1964 - and was later one of the team at IBM that invented this 'personal computer' that we are now talking though.

He has also since done other academic courses . He was a VERY clever man. If he had cared to he could put at least 2 degrees, two PHDs and many other qualification after his name.

But my memories of him are disjointed and very much of the past.

As a young girl/youth I remember I was so impressed to find that at Cambridge his room mate was John Dunbar Marian Faithfull's first husband: http://en.wikipedia.org/wiki/John_Dunbar Dunbar was going out with her- MF - then and I met him but never met M Faithful, John my brother went to their wedding- I was very young then myself but I did grow up with him as my adored older brother and did visit him at Cambridge and remember his achievements and those he mixed with in those very interesting times .

International Times was an underground magazine of the time that he introduced to me at a 'too young age: http://en.wikipedia.org/wiki/International_Times

Reading this had a lot of influence for me and my life as such a young girl. Reading this as a woman taught me not to be a victim - so many young women of that time were victims an not proactive.

But so few remember how it was then i.e in the 50s and 60s

Basically it was hell to be young and especially female if you were alone who wanted more for themselves than was our class or destiny -

John broke the mold as his origins were as humble as mine ............he even spent some time in a Dr Bernardo's home as a young child - does anyone now remember what that was all about ? He must have gone through sheer hell!!!

Well I know he did

But we are the only ones I guess who remember - those who were there are he testimony to what we went through and so sadly he is now not now here.

But he was probably never recognized for the achievements he made and it was huge I would not be able to talk to you here on this PC if it was not for he likes of my brother .

That is huge!!!!!

Think of the significance the PC has on all your lives!!!

I will continue this when I can

Rest in Peace - My Brother, John Reed

I have not written on this for ages
As most of us with HIV say - '

'we just want to get on with our lives'

But today I learned my older brother killed himself??

Of course he did not have HIV - I am yet to hear if he had any other physical illness. I talked to only him last week on the phone. He did not mention anything then although I know he always worried about his health since having bad tosolitus and related infections severely as a child.

Apparently he left a note I have been told went something like this ..........

'I love you all'

I know he did - but my initial reaction was anger that he did this to his family

As once you kill yourself you are out of it - it is the rest of us that have to cope with what you did .

Given my own situation I can not say I have not considered it - but I will NEVER do this as it is NOT about me

It is about those you leave behind

But I know this is probably easy for me to say - I think of all of us John had it harder in many ways - and yet he achieved so much

Why you may ask does it happen to me and my family ? Well it just does!!

What follows are disjointed memories of my brother which I will edit at a later date when I have got over the shock
In his memory here is his web site where he stored our family pictures and videos of him and his children and their life: http://www.reedfamilyalbums.co.uk/ReedFamilyAlbums/videoalbums/index.html

I am trying to download the videos as fast as I can as he is not now around to maintain it so I fear it will go down soon

Here is a video of my older brother with my dad in the 1970s: http://www.reedfamilyalbums.co.uk/ReedFamilyAlbums/videoalbums/1970/Cine1.wmv

My dad was VERY small and my brother VERY tall.
Ironically John was always regarded as the OK one of the family!!!!
A very successful computer scientist, businessman and a 'man of means' in fact if you add together all the property he owned in Cornwall and Windsor and London, it must have amounted to a lot more than I realised , so to my mind he must have been failrly well off compared to me and most I know .
But obviously your financial situation this is not everything

And as far as I knew he had reasonably good physical health for someone in his 60s ( although I know we share a very traumatic childhood and that probably I know more than most why he did this very final act.

Whatever his life has been since I know his reasons are in the past
A past I partly shared

He has two birth children who each recently had children, his grandchildren and his foster daughter that he later adopted has children that he loved.

So this has been a complete and utter shock to us all.

Tuesday, 13 January 2009

My mum died today - Isle of White Pop Festivals - it might not have any connection for anyone else but goes together for me !!!!

My mum died today - yes she was over 80 but she never had a good life and faced so much - Yet she always did what she could for others

She was special but it took me years to realize this.

My mum - she was an absolutely lovely!! So accepting of others, which is a true gift.

A kind and totally wonderful woman - a nurse in WW2 ( hastily
Trained up for the war at a young age as many were then and a nurse then that saw many an awful thing and awful deaths)

...............and later a pre school/playgroup worker and a then a carer of disabled children and despite her own blindness she worked for the Red Cross in later years
until she could not anymore - due to her own difficulties -

She was a woman who always did her best for her children - 3 of us and one step brother who she did not have main care of but did her best as and when she could

and tried to care for everyone else when she could - she took on other children during her life .......... in the days when the social services just were happy if you could help - in often
very difficult and awful circumstances for her she did a great job.

When I was young theses other young people, They were often termed as 'lodgers' but believe me that were a lot more than this.

I remember one very funny time when I was about 15 - 1968/69 and sneaked off to the Isle of White 'Pop' ( The Bob Dylan one? http://www.ukrockfestivals.com/iow1969.html - http://www.britannica.com/EBchecked/topic/708455/The-Isle-of-Wight-Pop-Festival -

No maybe it was not that one as that was the year after in 1989 - I went to 3)

So this was the 1968 one I think? that one of our 'lodgers' followed me and my friend and hitched with us!! We did not ask her and she frightened us a little.

As she was just out of Park Prewitt - the local mental Hospital/asylum - little did I know I at that age would be sectioned there a couple of years later at 17 myself !!!!!! .........

And she had an addiction to what we used to call then - Mogadoni.e Nitrazepam

Which made you manic and totally 'out of control' for the first 30 mins to an hour of taking it - which you could extend if you drank alcohol -which she did - with it for a lot longer but then - eventually whatever you did - made you stupid and coma like.

So us ................ two naive 15 year old's spent the weekend at the Isle of White Festival trying desperately to control a 22 year old who was totally off her head on Mogadon and was alternatively manic or in a somnolent almost in a coma so we had to carry her!!!.

It rather upset our enjoyment of Bob Dylan and the other wonderful performers!!!

but we felt we had no alternative as we felt we had to keep this young woman 'safe' for my mums sake!!!! Because we all respected my mum and whatever we had to look after this young woman as she had followed us so it was our responsibility

My mum was just so accepting, perhaps maybe to accepting given that I was complete rebel in the 60s and 70s - But it was a trait that i did not appreciate or value then and probably because I have not been accepting like this with my own daughter is why my daughter and I sadly do not get on?

As I have 'strangely' tried to control my own daughter and she has resented it - yet I was brought up by a mum whose great assist was her acceptance of her own children and her ability to give love and guidance but understand we had to make our own life and mistakes from as young as we needed too.

My mum has been partially sighted all her life and mostly blind
since her late 40s............ really since I was in my teens, and has had many illnesses
and later Alzheimer's - she knew it was happening i.e Alzheimer's -
and was so very brave - so has suffered so much - so we are all glad
that it is now over and she is able to rest at last

All our mums are special, even if all they did was bring us into the
world, that is a feat in itself - well that's what I think now having
only done it once to full term pregnancy!!!

I for one did not appreciate how special my mum was until I had gone
through quite a few things myself and then understood how hard and
complicated her life was and how much she had done in her life and
for others.

So this is for all our mums - they are all so special and so are we
all as women and some/many of us as mothers too - all women are
special and so are all of us here too - Since I have had HIV I have learned again

And I have been humbled by what others have gone through, both mothers and daughters/sons.

Thank you so much for reading this