AIDSiversary 28 : Older than I thought I would be

This is the year I turned 65, 28 years after my HIV/AIDS diagnosis (yes, the A word, as I had very few CD4 cells and an AIDS-defining pneumonia) and, by subsequent interpretation, likely 44 years after I seroconverted. I have to say that I did not expect to be this old.

But this is the new reality of HIV. Stably controlled virus, time for me to accumulate a number of other conditions to make my life a little more difficult. At least I still have my mind, if not the body that I wanted to have when I was in my 30s.

The big things I am dealing with now are psoriasis and psoriatic arthritis, both of which can really only be effectively treated with medications that are immune suppressive (no thanks, I have that covered!), plus the effects of being very overweight : hypertension (controlled with meds), mechanical problems with my knees (won’t be doing anything about that anytime soon). I guess I just have to own the sloth and gluttony, but that for me has always been a part of being kinder and more forgiving to myself, made concrete in the form of self-indulgence.

But like I said, I really didn’t plan to live this long, so sacrificing for longevity isn’t on my to-do list.

The other thing that this age is bringing upon me is the whole retirement issue. Of course I didn’t plan for it, not expecting to be here. Earlier this year, I let go of an earlier strategy to delay my public pension claims until I could maximize the benefit (age 70), when I realized that if I die earlier I will have contributed all my life and the benefit will revert to the general funds of the government. No thanks! So I am collecting pensions and continuing to work, consigning the pension payments to tax-reducing retirement savings that I just set up this week (better late than never?). I figure that if I work to age 70 as I plan, I will be able to have a double pension from 70 to 75 and surely I won’t live longer than that!

Working until 70 also gives me the next 5 years to prepare to be replaced in my work. Like I sais in a recent reprise of my Je suis seropo video, I will leave the job, but not the work. As the fight against HIV and for the rights of people living with HIV or those the most at risk of it are too important to me to adandon.

Hey, how about my video? Here it ism in French only:

And my last lab results from 15 August (I also had a blood draw last Friday, but it’s a little early for results today).

CD4 count: 246
CD4 %: 27
And someone in the lab cleverly didn’t do a viral load test, but an HIV test instead, so I have no result for that.

This is also the evolution of HIV today: neither I nor my doctor are very worried about not having the viral load result, as I am good with taking my meds and, like I keep saying, stably treated.

I would be more upset if I were still out there “on the market” because the application of criminal law to the issue of non-disclosure of HIV status requires proof of a low (<200) viral load every 4-6 months. I would be disclosing anyway, as I don’t really have much to risk beyond rejection (job, home, solid support network…).

I might have to raise a stink if the lab repeats its error, however….

 

Silver AIDSiversary

 

This is a special one, because I have decided to transform it into a fundraiser for the Fondation québécoise du sida. Before I get started on my annual reflection, let me share the links to that fundraiser. All donations most welcome and appreciated!

English : https://fqsida.org/en/news/silver-aidsiversary-of-ken-monteith/

French : https://fqsida.org/nouvelles/sidaversaire-dargent-de-ken-monteith/

Twenty-five years since my fateful encounter with Pneumocystis Carinii Pneumonia, my AIDS-defining illness, and the eventual diagnosis of HIV and the depletion of my immune system. That was obviously not where the story began, but it was the moment of consciousness that the story was well underway, if not nearing its end.

This year I am embracing the interpretation of when the story likely began, at about this time of year in 1981. I had met a man (met being the ultimate euphemism) recently arrived from New York, who managed to give me a couple of infections. I was pretty annoyed by that at the time, but if he also gave me HIV, I can’t blame him for that — neither of us could have been aware of this virus almost three years before its identification.

After having dealt with the gonorrhea and the condyloma (which I would have to deal with many times over the years), my throat started closing up. I reflected on this a couple of years ago in my 23^rd AIDSiversary post.

But let’s put this reflection in the context of a theory I have developed that I call Three Generations of HIV/AIDS.

The First Generation, from the beginning until 1996, was defined by the message that people got with their diagnosis: “You are going to die”. People did a lot of desperate things, and a lot of things that made it possible for them to live as fully as possible in the limited time that remained for them. A time of selling life insurance policies to have the means to live well for a short period.

Some people survived this and then had to face the consequences of having a life longer than they expected, with their survivors’ guilt and their depleted financial resources to show for it. This generation had a particular relationship with the virus, with health care and their health care providers, and with science generally. Remember that this desperate period gave us the activism that changed the ethics of research, and that impact has spilled over to research on all kinds of infections.

The Second Generation begins with the availability of the first really effective HIV treatments, the protease inhibitors, used with other antiretroviral medications to control the infection and put people back on the road to recovering their immune systems or preventing their depletion in the first place. Death rates plummeted, a truly hopeful era, but with some rather harsh side effects and difficult dosing schedules.

The message I got was like the messages others got at this time: “You are going to live, but it will not be easy”. My first treatment had one component that I took three times a day fasting (no food two hours before or one hour after) and two other components that I took twice a day. I almost got kidney stones on a few occasions from this treatment and I think it set me on the road to some elements of the body changes that I have experienced (I’ll take personal responsibility for the sloth and gluttony that really capitalized on those beginnings).

The Third Generation for me starts in 2008 with the Swiss Statement. The Swiss federal commission on HIV/AIDS reviewed a large number of studies and drew the conclusion that people with a controlled HIV viral load did not transmit HIV to their partners. This was the beginning of a long road to the eventual recognition by public health officials all over the world that “Undetectable = Untransmittable”. The message to newly diagnosed people in this generation is: “You will live a long life of quality and you will not transmit HIV to your partners”.

So much work has gone into producing new generations of treatments that are easier to take and have fewer side effects, from a number of one pill a day options to the newest developments that are nearly available here, the injectable long-lasting treatment that takes away even the daily pill.

All of these generations — and I realize I am making broad generalizations that don’t necessarily apply to particular individuals and their personal experiences of HIV — have particular relationships to the reality of the HIV infections, the treatment, their health care providers, and even to issues of life and their own mortality.

I define my own place in this as being on the cusp between the first two generations because, despite the fact that I had an effective treatment to start right away, I started at a point of depletion of my immune system that for me removed the expectation of that long life I was told by my doctor that I would have. It’s the personal pessimism to which I cling in the face of the professional optimism I have for others diagnosed with HIV today.

What this means in terms of my relationship to HIV, treatment, doctors and mortality is probably my own little potent mix. I can say that I didn’t expect to be here 25 years later, with 41 years of HIV infection, but I like to say that I am living in the bonus round. I have learned to be kind to myself, forgiving even, and I am not likely to make a lot of sacrifices to prolong my life. I once disturbed my now-retired first doctor by telling him that I would rather have a quick heart attack than a long life without chocolate.

In all of this, I bear in mind the philosophy shared with me by my late friend Doug McColeman when he brought me home from the emergency and ran back out to fill my antibiotic prescription to treat my pneumonia. I didn’t think I had the strength to face HIV and all the trouble it would take to stay healthy, but Doug told me I did have the strength, and that I would do those things for the pleasure I would have tomorrow.

Twenty-five years of tomorrows later, I know I have more pleasures to come.

My most recent results:
CD4 count: 252
CD4 %: 24
Viral load: "Not detected" (test sensitive to 20 copies/ml)

AIDSiversary #22: Angel Number?

I think the number 22 is supposed to have some kind of numerology or tarot significance, but since I’m an all-around unbeliever, I’ll just marvel at the coincidence that will not happen again — 22 years since my AIDS diagnosis on December 22, 1997.

I am well into the bonus round now.

This day always has some significance for me. A real turning point that I didn’t think I would get past.

Yes, as my doctor sent me to the emergency with my AIDS-defining pneumonia, I was also being assured that I would live, not die, so I had some kind of advantage over those who went before me. I had the advantage of being diagnosed when there was effective treatment available, so I wasn’t told to get my affairs in order and prepare for the end.

Still, my story is a cautionary tale (don’t wait to get diagnosed — you will damage your system beyond full recovery), and I allow myself to cling to a certain degree of pessimism on a personal level, usually privately, even as I applaud the optimism of our time with respect to HIV. My CD4+ count hovers around 300 (up from my original 4), usually below, and the more stable CD4% is in the low 20s after this many years of effective treatment and undetectable viral load.

AIDS doesn’t mean what it used to. You might be familiar with the graph of progression from infection to death, but that just doesn’t apply in the time of treatment, at least for those of us in the wealthy north. What used to be a one-way ticket is more reversible, and many will recover their health to “normal” levels of immune function, even if they have to keep up their treatment to maintain that.

Personally, I refuse to reject that “badge” I sweated and gasped for air to get. I will not dissociate myself from the term “AIDS” as so many people I know who are living with HIV seem anxious to do. I do make a point of educating people about AIDS not being a prognosis in our current time, but it remains a diagnosis of import, underlining the failures of a system to diagnose and treat people soon enough to avoid it.

From my particular privileged vantage point as someone who can be open about his HIV without risk to employment or the support of family and friends, I can also decry the growing trend of avoiding even the mention of HIV. Organizations changing their names to remove references to HIV or to AIDS think that they are working to destigmatize access to their services. Maybe. But they are doing so in a way that affirms the stigma of HIV and of AIDS. Every change in this vein saddens me and feels like a blow against us in the fight to overcome that stigma.

If we can learn anything from the struggle for LGBTQ+ rights, it ought to be that closets are for clothes, and that people who are out and open and refuse to be ashamed are on the path to liberation and preparing the way for others who might not have the liberty to be so open at this particular time.

If we want to get to liberation, someone has to make the path, and others must decide to follow that path.

Last results from September/October:
VL: “not detected” (test sensitive to 20 copies/ml)
CD4#: 306
CD4%: 24

Carmen: A Cast of Dozens!

What a lovely note on which to end the 2018-2019 season of the Opéra de Montréal.

The usual disclaimer applies as always — not an expert, just have my own observations, sometimes comment out of left field…

Right from the beginning I knew I was going to like this production of Carmen. The overture so familiar that I was almost convinced that Bugs Bunny had done three operas, and not the two I can remember more clearly. Bizet, who died without knowing what a hit this work would become, is to be revered for a lively start, but the credit for the scene that greets our eye as the curtain goes up goes entirely to the Opéra de Montréal.

Carmen walking in silently, pulling and constrained by an enormous train of red fabric from which she eventually breaks free (but will see again). It doesn’t take long for the stage to become populated by a huge crowd, there almost all the time, which is lovely for its wealth of costumes, but even more so for the many chorus singing roles. Love that!

Carmen might be the headliner, but let’s take a moment to talk about Micaëla, who enters searching for Don José to deliver a letter from his mother, but also to show her love for him, and his mother’s wish that he marry the messenger! France Bellemare has a really strong and beautiful voice. If she had more parts to sing, she would surely have stolen the show. Just lovely.

Seductress Carmen, arrested for her part in a fight in the factory, uses her wiles to persuade Don José to let her escape. He suffers the consequences, but seeks her out after his release from prison and she persuades him then to commit a further transgression by deserting to join the gang of smugglers.

Act 3 opens with a lovely visual effect, a series of lanterns working their way onto the stage behind the scree. There were images on the scree (projections?), but the way I saw it, it seemed like some of those lanterns were coming through it into the foreground. I think I was fooled by the visual effects! In any case, we ended up in the smugglers’ camp, and two of the Gypsy women (yes, I know, Roma women, but Bizet lived in another time!) were reading their own cards, with ever more fanciful and profitable fortunes, right up to the death of a wealthy husband, leaving the card reader a wealthy widow (she seemed delighted by that). Count on Carmen to cast a pall over that party, with a self-reading of doom and gloom and death! No wonder her relationships don’t last long!

Fabulous toreador Escamillo makes a play for Carmen, but all he succeeds in doing is provoking Don José into a fight. Carmen has to intervene to break it up. Micaëla announces Don José’s mother’s severe illness and imminent death, he leaves with her, and that is too much for Carmen. End of that relationship…where is that toreador?

There’s a lovely crowd scene celebrating the arrival of the various teams of bullfighters, each with a role so specific that I was confronted by my ignorance of bullfighting and what everyone’s role might be. Escamillo is, of course, of the highest rank and the most lauded. Also the most adored by Carmen, apparently, who has moved on rather nicely from her last failed relationship.

If only Don José had moved on, too, we might have a happier ending. Instead, we get the spectre of controlling intimate relationship violence, as he tries to prevent Carmen from returning to the bullring and eventually stabs her. Cue the return of the red cloth, this time a giant banner hanging from above, attached to Carmen in her death like a river of blood and completing the metaphor. Don José proclaims his guilt and invites arrest. The curtain falls before we get to that.

So now that I have mistold the story (that you find elsewhere with greater clarity, I’m sure), let me share my uninformed opinions about the singing, the costumes and the sets!

This is really what I look for in an opera: catchy tunes, beautifully sung, opulent costumes (and SO MANY of them, what with the crowd on the stage!). I love that there are many duets and many songs for the chorus, as they sounded fabulous. The children (there were many of them, too) were excellent in their roles and excellent singers as well. I couldn’t see in the program who they might have been, but we suspected a school somewhere in Montreal.

Oh, and let me appreciate the nods to flamenco. The rhythms are not in Bizet’s work, but we do get a couple of guitars on stage, the sound of castanets from the orchestra, and some distinctly flamenco moves. I love flamenco and associate it with the Carmen story (though as an aside, I also associate with this lovely video of a protest in a Spanish bank — how more delightful can you get than deploying this powerful culture-specific art form to protest the ravages of modern finance?!)

The set was spare, the outdoor square doubling as an indoor space by the addition of furniture, some other elements descending from above to suggest a more industrial area (smuggling space). The multimedia aspect was a little light in this one, with a short thunderstorm and the projections and other use of light that I have already noted.

We left very satisfied, though, and would highly recommend seeing this on one of its upcoming dates (7. 9, 11 and 13 May 2019). Tickets here if there are any left!

Rigoletto: It’s all good fun until somebody gets stabbed

Okay, we’ll just start with the usual warning — that I am no musical or operatic expert — and add another about the time and place and the horrible place of women at the time of the penning of the opera, the time it was set and…well…even today. Yes, #GildaToo.

All of that said, the Opéra de Montréal’s production of Rigoletto was a delight and an excellent way to start off the new season. I have a personal penchant for bouncy Italian music, soaring duets and solos, and even for a good rollicking chorus, and I got them all. Those and the bonus of soprano Myriam Leblanc treating us to some exceptionally beautiful high notes and bass baritone Vartan Gabrielian setting my little gay heart aflutter with some lovely low notes. And I believe those two are both locals, or at least Canadians! Lovely!

The story is, of course, completely awful. The lascivious Duke has his way with any woman he wants and tends to punish the men who dare to stand up to him about that. Very little opportunity to hear what the women involved might want, of course. A carelessly broad curse tossed out by Monterone following the “seduction” of his daughter, the Countess Ceprano, seems to have stricken Rigoletto, the court jester, even more than the Duke who did the “seducing”. (Yes, those quotation marks are an expression of doubt around the issue of consent.) Rigoletto, for all his mocking of the male “victims” of the Duke’s philandering with “their” women, wants very much to protect his daughter from his employer.

The crowd will have none of that, thinking that Gilda is Rigoletto’s mistress, not his daughter, and they set out to kidnap her, involving a strangely unsuspecting Rigoletto in the plot, blindfolded of course. Gilda is delivered to the Duke, who she already knows as “a poor student” who spied her in church and has professed his love to her. The crowd’s recounting of the kidnapping of Gilda to the Duke is one of the delightful musical moments (crowd edition) of the production for me.

Rigoletto gets Gilda back and arranges for her to escape to Verona disguised as a man while he takes advantage of an offer from the assassin/innkeeper Sparafucile (Gabrielian — swoon — beautiful voice AND dangerous!) to be done with the Duke forever. Rigoletto pays half up front after he and the yet-undisguised Gilda overhear the Duke’s overtures to Sparafucile’s sister Maddalena (and he sings that women are fickle!), to return with the second installment when the deed is done. He insists on being the one who will throw the body into the river.

Maddalena develops a soft spot for the Duke and proposes that her brother instead kill Rigoletto when he returns, thereby getting the whole sum anyway, but Sparfucile has scruples and will not betray his client. Not until version two of the ruse presents itself in the form of a beggar who knocks at the door. Killing the beggar instead of the Duke to fool Rigoletto is just fine, apparently. Alas, the beggar is Gilda in her man drag and she is stabbed from behind by our dangerous hitman.

Sparafucile delivers the body to Rigoletto as arranged and collects his final payment. Rigoletto is unable to resist looking at the corpse — especially after hearing the Duke in the distance singing La dona è mobile — and discovers his daughter, who seems to come back to life for a bit to sing (this is opera after all), and then sings as an angel from atop the city walls. The philandering Duke has doubtless moved on to his next conquest.

I liked the sets, also as usual. Great walls in a state of disrepair, cutaway views of courtyards, and very little disruption of the action for the changes. In one spot, Rigoletto and Gilda are singing in front of the scrim and the curtain, allowing for a quick set change that is discreet and well-executed. The lighting also bears mentioning, as the thunder/lightning storm that unfolds while we are looking into the courtyard at Sparafucile’s wayside inn continues through the aforementioned scene change — we see flashes of light at the bottom of the curtain. Very clever.

To recap: lovely opera, horrible story, beautiful voices, nice sets and good lighting effects.

To go off on a tangent, I think it might be time for the conductor to update his profile photo (he looked significantly older in person!) and it might be time for me to invest in some opera glasses (I’m looking at you, Vartan Gabrielian!).

Ritual Beauty, Unusual Sound

What a lovely evening I just spent. Delightful company and an extremely engaging première performance of Svadba by the Atelier Lyrique of the Opéra de Montréal.

When I invited my friend, I described the performance as an a capella Serbian hen party. Not far off in terms of the content, but I sold it short in omitting what I couldn’t have known at the time — a multimedia experience, an exposure to voices that reminded me of a Bulgarian women’s choir with which I and my colleagues were completely obsessed at the end of the 1980s/beginning of the 1990s.

Let’s start where I know my way: the story. It is a group of women who are preparing their friend for her wedding. The go through all manner of things…grooming, hair dyeing, discussing how the proposal came about, the qualities of the groom, their reminiscences of childhood games, and what a marriage means in terms of separation from family and reconnection with a family to be. It ends with the bride and her five friends, all bridesmaids, lined up for the wedding.

It’s really all about the voices, and they were beautiful and strong, wrapping around each other in amazing melodies, swooping and curling into strange and sometimes jarring sounds. I know that some of these were just nonsense syllables, one trip took us through the Serbian alphabet, but also words and phrases, sometimes sung in the round and slightly out of synch (intentionally) like some modern music on loops of slightly different lengths that phases together and apart. I was amazed at the capacity of the six women on stage to maintain a nonstop performance through multiple changes in cadence and tone, notes that took us to the mystery of the foreign by seeming to sour at the end, just slightly. Strikingly beautiful.

As if the challenging singing were not enough, the women also contributed sounds, whether by stomping, clapping, slapping their thighs, or with instruments like a little whistle deftly played into birdsong, cylinders manipulated into rain or shower water, a drum. These combined seamlessly with the vocals to create a very impressive performance.

The set was very simple, with thin white curtains/blinds “hiding” the bridesmaids’ dresses, but also serving as surfaces on which words and syllables and nonsense sounds were projected, floating up organically from the singers. One of those blinds turned out to be more like a circus silk, as the bride sat in it like a swing. A few chairs, a white sheet and a table on wheels completed the props, transforming smoothly into what they needed to be.

At the end, after all the applause (and how refreshing that every person joining them on the stage in the various supporting and directing roles was also a woman!) two guys with traditional wedding-type instruments (a big bass and an accordion) came out as plates of cake were set out. I don’t know if the traditional wedding follow-up of cake and dance will follow every performance; we had the honour of sharing our experience with the Serbian Ambassador and the Honorary Consul in Montréal.

Let me know if there’s cake on the other nights. And that — in case it wasn’t already clear — means DO go, and then report back on the cake situation.

Enjoy!

JFK: it’s the journey; we all know how it ends

“There will be gunshots” they said. I’m here to tell you they are not the gunshots you were expecting. But I’m getting ahead of myself…

I always preface my opera reviews with the disclaimers — not a music or opera expert, tend to be shallow or at least not very sophisticated in my tastes, and so on. Give me a light Italian opera any day! On the other hand, I like to think of myself — without any justification whatsoever — as someone who can appreciate the new and the avant-garde. We have an excellent test of that in JFK.

To start, I really didn’t like the music. And then it grew on me a bit, starting with the almost country song sung by Lyndon Baines Johnson and the boys as they humiliated JFK in the bathtub (more about the scenario later). Then I started to appreciate the rest of the music, ominous and haunting notes that seemed to sour as they finished, like a crazy nightmare unfolding. I ended thinking that I would really like to listen to the music on its own, to see how I would like that.

The Opéra de Montréal (and I guess the production itself) did the usual amazing job with the set. Lights! Neon! Marquée lights! They were all on the stage and part of the set. Some of them were a bit annoying (my friend and I didn’t really like the green neon, which was jarring) and I couldn’t get past the horrible “S” in the TEXAS sign: it really seemed like it was the wrong font (I’m a font geek), at least until I got home and was able to find a historical photo of the Hotel Texas sign in the background of an actual JFL speech. So I’ll shut up about the “S”, despite really not liking it!

There were other interesting elements of the set. Four rooms of a hotel suite on a turntable, so we could see where the action was happening. A big head table of an official breakfast that actually pulled apart to each side when we needed to return to the hotel room because JFK and Jackie (Jacquie?) had not yet arrived for the breakfast. That device was particularly interesting, as the breakfast guests who were already seated continued to look like they were eating and chatting while the focus and the light were redirected to the hotel room. Well done.

One prop that drove me crazy was deployed in the Soviet scene. A giant hammer and sickle (as separate parts) that were moved together with regular rhythm…but the sickle was upside down! I’m a stickler for an upright sickle, or at least one that, brought together with its hammer, would make the classic symbol, not some new permutation of it. Luckily, that was over quickly. Kruschev, however, came back for a cameo in the bathtub. Yes, surrealism reigned.

So the scenario was a bit out there. I guess that’s a good way to address a trauma that turned the world upside down for Americans and for many others as well. A strange and surreal event follows a strange and surreal build-up, which is completely reasonable, especially when we remember that it is opera. Friction between JFK and LBJ blows up into an invasion of gaudily costumed loudmouths to mock the president in his bathtub. A row of 3-D glasses wearing spectators face us in the audience at the end. And in between, random cheerleaders and a children’s choir, which I guess might be less surreal in the time and place than I perceive them to be in my time and place.

But there were real ties to the familiar events, too. The pink Chanel suit with the pillbox hat, hanging in the hotel suite closet and then worn by Jackie on what we all knew would be the fateful day. A degree of discord between JFK and Jackie, but with signs of wanting to be better together. And while the story on stage only takes us up to the fateful time and day, the Opéra de Montréal pulled out the projector again, and the real footage of the motorcade’s progress through Dallas was projected onto the set as the opera came to its end. Very tastefully done, and effective.

One more thing to talk about that left me feeling slightly uncomfortable. The Fates. We’ll leave aside the Cutter, who seemed to be the Lee Harvey Oswald character, complete with Soviet connections and a gun shooting from a window. The Spinner was also hotel maid Clara Harris and the Allotter was Secret Service advance man Henry Rathbone. Fine. I don’t know if these were real people (and I am apparently too lazy to look it up on the computer on which I am writing this!), but if I had a production in which there were two characters whose role it was to announce doom and they ended up being the only two people of colour on the stage (in my observation and memory), I might feel a twinge of discomfort. On the other hand, they are both big roles, so there’s that.

Overall, well worth seeing. Be ready for surreal and be ready for modern music that can be jarring at times, but let yourself be seduced by it, if only to be able to say that you’re not as much of a fuddy-duddy or shallow appreciator of light, standard Italian opera fare. It’s working for me so far.