NOTTINGHAM’S ONLY INDEPENDENT

VOLUNTEER RUN HIV PEER SUPPORT GROUP

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Registered Charity 1129416

Memorial gathering for our dear friend Nicola

On 12 December Tagadere held a luncheon in memory of our dear friend Nicola Perkins who tragically died aged 52 on 31 July following a stroke.

This was an opportunity for some of Nicola’s numerous friends to gather within the community centre which was home to our Tagadere drop-in for many years and to allow an attempt to heal the emotional wounds which were caused by her unexpected death.  Our luncheon was a poignant occasion and was fittingly held in the place where we share so many memories of Nicola.

We held our own memorial in the hopes that by doing so, it would contribute towards counteracting the hurt and distress caused to Nicola’s friends within Nottingham’s HIV community by not being informed of the arrangements for Nicola’s funeral despite being given the same preliminary date on three occasions and assurances that we would be informed of the actual day.

Bereavement is an unforgiving emotion which affects everyone with individual reactions and this is something which always should be considered.  However, there is a great sense of effrontery surrounding what has been perceived as a calculated, disrespectful action intended to omit Nicola’s friends within the HIV community from paying their respects to their friend.  Knowing her as intimately as we did, we are confident that this exclusion is something which would undeniably have angered and distressed Nicola as much as it has her friends.

To add further insult we received a request to remove Nicola’s name from the Tagadere website and Facebook page.  Nicola would have been incandescent with fury at this, which seems to be an attempt to deny her HIV status.  Of course, it is a family’s prerogative how to conduct funeral arrangements.  Nevertheless, it is wrong to mislead friends of the deceased in order to prevent them paying their final respects in case anyone should be offended by reality.

It was distressing to discover via an internet search that Nicola’s funeral had already happened.  Having undertaken the unenviable task of informing Nicola’s many friends within the HIV community that she had died and then being unable to answer subsequent enquiries about the date of the funeral, I then had to inform a long list of people that Nicola’s funeral had already taken place.

We are fully aware that there were reasons for not letting us know the date; it does not take someone of Nicola’s elevated intellect to deduct those motives.  When there is a death it is a disruptive, uncertain time – and within the HIV community we have witnessed more than our fair share of deaths during the height of the AIDS pandemic.  Even so, it was incredibly rude and disrespectful to not bother to tell us.  All it needed was one quick phone call, a text or a short e-mail to say that a family based funeral was preferred.  That of course would have respected.  Maybe a church including people with HIV would have been too ghastly a proposition to consider.

Nicola was particularly attracted to Eastern mysticism and philosophies and followed the Buddhist religion, often speaking of her fascination with Tibetan sky burials and saying that she liked the idea for herself.  She was entranced by elephants, which she exemplified artistically by making some hand-printed Lino-cut cards during one of the frequent Tagadere Art Group afternoons.  These are pictured below.

Considering this, it was fitting that one of our Tagadere family brought along his very substantial porcelain ceremonial Indian elephant.  Upon this we placed a pair of temple candles which gently illuminated a beautiful framed portrait of Nicola positioned beside a colourful display of attractive roses. Amongst the spiritual characteristics attributed to elephants are honour, stability and tenacity; three qualities which could certainly also be credited to Nicola.

There is no doubt that Nicola was unique.  She was gifted intellectually and had many quirky foibles.  It would be an endless task to itemise her significant academic successes and her passions; but instantly synonymous with Nicola are ballet, overseas travel, cats and of course red wine.  We must not forget the red wine!

Nicola often related the story of when she was a teenager she won a Radio One competition to meet the group Japan.  With her beloved real mother as chaperone, she travelled to London to meet the band who presented her with a signed LP, which instantly became one of her most treasured possessions.

Having extensively lived and taught overseas it was evident that travel and exploration were a passion dear to Nicola.  It often seemed that her raison d’etrė was to engage in adventurous holidays which were interspersed with devoted visits to various ballet performances around the country; often staying overnight in hotels in order to attend further performances of the same production.

In her professional role as a support worker, Nicola’s attention to detail and meticulous adherence to working the right way meant that she frequently – no, always – went the proverbial extra mile.  There are innumerable people living with HIV whom Nicola assisted and supported to satisfactory outcomes.  For many years, she championed and advocated many dispossessed, subjugated and often desperate people.

She was reliable, trustworthy, incredibly diligent, and owned a phenomenal mental retention for legal and seemingly obscure minutiae regarding HIV/AIDS.  As a fan of Benedict Cumberbatch in his television role as Sherlock Holmes, she joked more than once that she had a similar fabled ‘Mind Palace’.

Nicola eventually learned to accept and ‘own’ her HIV diagnosis.  She regularly spoke of how increasingly empowered she had become, which she solely attributed to her intense involvement with Tagadere. Nicola was immensely proud of the achievements which Tagadere made and of her involvement in some of them.

In 2013 we received a letter from Nicola for inclusion on our website, albeit under the proviso that she remained anonymous because as at that time she was employed as a support worker she feared that she would receive a reprimand for showing bias.

This letter can be read by clicking here.  Click the panel again to close it.

However, as Nicola became more confident, during interviews for potential jobs she always disclosed her HIV status; her reason being that she thought being honest and open about being positive it would help to break stigma and force the issue into the employment rights arena.

Some visitors to the Tagadere drop-in were unaware that even though in attendance as a professional support worker, Nicola was HIV positive.  On one occasion instantly comes to mind of when leaving the community centre, a drop-in attendee who had called in for advice complained to me ‘It’s alight for people like her, it’s just a job, she can go home and forget about HIV.’

Nicola’s personal empowerment was demonstrated when she eagerly agreed to visiting Radio Nottingham to talk about HIV for World AIDS Day 2014.  I had suggested to her that if she went, it would help to dispel the stereotyped images of people living with HIV. Nicola definitely was eager to take advantage of the opportunity to further educate a wider audience about the reality of HIV.

She participated in the interview with a calm, assured and intelligent manner, despite being faced with a couple of personally challenging questions.  This interview prompted Tagadere to receive an astonishing increase in numbers of people wishing to obtain information about HIV and saw an increase in numbers attending our drop-in. Additionally, as our new media representative, Nicola appeared twice on the local television channel Notts. TV, when she spoke assertively as a woman living with HIV. For these almost spontaneous interviews, Nicola felt a sense of urgency and was prepared to drop whatever she was doing in order to whizz across town to reach the Notts TV studio.

The importance of these media appearances cannot be understated.  Nicola truly believed in HIV education and had an encyclopaedic knowledge of the history of HIV/AIDS.  A combination of meticulous adherence to detail and an investigative ability meant that Nicola was always a trustworthy source of up-to-date information advances in HIV medication.

Furthermore, Nicola and female friend in Tagadere formed our very own ‘Tagadere Dream Team’ and beneath this moniker they were galvanized to make many presentations to a wide audience of professional support workers, to attend HIV forums, visit hospitals and schools; all in which they dispelled preconceptions and stigma by explaining the reality of life as white, heterosexual women living with HIV.

The news of Nicola’s death was a devastating blow.  Throughout the pinnacle years of the AIDS pandemic we lost countless people, which led to a weary resignation on the announcement of a person’s death; yet the impact of the news of Nicola’s passing was tremendous upon her many friends within the HIV community.

Nicola was incomparable, complex, beautifully idiosyncratic, occasionally frustrating and an absolute pleasure to have as a friend.  She is greatly missed.

Nicola’s interview with Radio Nottingham on World AIDS Day 2014 can be heard here.

The transcript of Nicola’s interview with Radio Nottingham on World AIDS Day 2014 can be read here.