One battle back

In 1984, I volunteered to work on a project to reduce the transmission of AIDS in my city's gay community. A team interviewed hundreds of volunteer subjects to gather information to develop harm-reduction tactics.

A small but instantly identifiable subset of our subjects said they would accept no measures that curtailed the sexual activity they preferred; this was typically framed as 'political' or viewed as loss of hard-earned rights. When I rolled my eyes after one of them said he was off to the bath house, my wise public health inspector colleague Tim said, "He is fighting one battle back."

He meant that a small percentage of interviewees were still focused on fighting for acceptance of diversity, which to them included practices that made them feel liberated, proud and out. Sometimes, after Tim concluded the questions, he would thank the man, and say, with far more benevolence than his words would indicate, "You stupid git, don't you want to live? I want you to live."

I think of this now, as the re-opening of my city begins. The parallels are far from perfect—but every time I hear myself, or a friend, moaning that we over 60 will be sidelined, I think of that other epidemic.

Some hard moments are coming up, as the younger population slowly return to a less-restricted life. I expect those over age 60 or 65 to be asked to maintain distance; perhaps those working will be encouraged to take early retirement. Multi-generational families will have to sort out how to include grandparents or elder relatives.

That cohort have had their "one battle back": the fight against explicit or hidden ageism. We made efforts to stay skilled, relevant and competitive, look vital, keep our faculties, and, god help us, not be sidelined in any aspect of life.

We are already anxious about when we will get to walk the Santiago del Compostela, visit family in NYC, help to build a school in Ecuador as we'd planned. Our world feels smaller, less controllable.

There will also be everyday Covid-senior-moments, too. Without a vaccine, will we eat in a busy restaurant, go to a concert hall, even visit the library? Many months—or even longer—could pass before we get our ringside seats back. Already, some have not behaved well; a Susanfriend told me about a house party last weekend on a nearby street that was busted for too many persons in attendance. It was a 45th wedding anniversary party at the couple's home.

I think of those militant young men whom I interviewed in '84, furious that their lifestyle was curtailed by a strange virus (which at the time was a death sentence), of their determination to live on their own terms. Tim told me that within four years, every one of those defiant subjects had died.

This new virus is not mitigated by safe sex, but safe intersections. I hope we will accept prolonged distancing with grace and forbearance; that we give warm appreciation to those responsible younger persons who care for us by respecting our vulnerability, and that we do not flout the restrictions just to prove we're not over the hill.

I tell myself I will travel abroad again, sit in a theatre, attend a friend's choir performance—but probably not as soon as my younger neighbours.

This will be the single most important contribution the elders can make in their time remaining.


 







Comments

Jane said…
I too had been reflecting on the parallels between the Covid-19 pandemic and the AIDS crisis. Initially AIDS/HIV was managed through behaviour changes and then pharmaceuticals followed. We are in the same position with Covid. You have articulated this really well thank you
LauraH said…
It still pulls me up short when I realize I am in 'that' cohort.
materfamilias said…
Just acknowledging the truth in your post and your cogent articulation. But oh, it touches a nerve. All the fears about old age and social isolation . . . .
Mary said…
A cogent argument.
Laura J said…
Acknowledging who we are and where we are in the life cycle. Internalizing one’s age is so difficult—am I not still 27? If we have been fortunate enough to have active times until now it is a shock to curtail that headlong motion. And you know, we just might not be able to do next year what we had planned to do this....sobering truths This is our life now. We at least have wisdom and perspective to help us.
The problem is that is not simply a matter of curtailing sexual life (which I've pretty much curtailed anyway as there are few worthwhile partners of my cohort available) but intellectual and social life (I mean participation in social movements) that are pretty much the things that make life still worthwhile to me. No more visits to the library (where one meets kindred souls as well as borrows books) would have me pretty much asking for Dr D. I will NOT live on behalf of younger persons unless there is some other kind of bond.

I don't have the same kind of sex/death wish as your younger gay men sample (and yes, I knew quite a few victims of AIDS, including a very close friend - he came from a VERY restrictive Catholic background and nobody in his family knew he was gay - he was a head of a department at University of Ottawa at only 37) but for me, being useless and being dead are pretty much the same thing.
The problem is that is not simply a matter of curtailing sexual life (which I've pretty much curtailed anyway as there are few worthwhile partners of my cohort available) but intellectual and social life (I mean participation in social movements) that are pretty much the things that make life still worthwhile to me. No more visits to the library (where one meets kindred souls as well as borrows books) would have me pretty much asking for Dr D. I will NOT live on behalf of younger persons unless there is some other kind of bond.

I don't have the same kind of sex/death wish as your younger gay men sample (and yes, I knew quite a few victims of AIDS, including a very close friend - he came from a VERY restrictive Catholic background and nobody in his family knew he was gay - he was a head of a department at University of Ottawa at only 37) but for me, being useless and being dead are pretty much the same thing.
Duchesse said…
Laura J: Don't know abut you but the government lets me know every month that I am an old person! I like the watchwords, "wisdom and perspective".

lagatta: I trust you are finding ways to be useful, and will continue to do so... as did so many of the men in that cohort.
Duchesse said…
materfamilias: We may be more protected in some settings than others; I hope we will make full use of the contacts that seem low risk, but when I try to imagine myself in another huge concert venue, packed with people, I wonder if it will ever be.

Jane: In my country HIV infection rates have jumped 25.3% in the past four years. Over 2, 500 cases in 2018; retrovirals do not work for everyone.
And the new normal may not be the old normal but we are the post war generation that have had it all. Sure I still have lots of plans of places to visit but they may never happen and that’s ok.
Duchesse, am I allowed to be a wee bit snarky and allowed to remember that the straight, but solidaire with gay people, men of that cohort were able to do do with much younger people?

Melissa, depends on parents' income, social class, race and a hell of a lot of factors. I never had that golden youth and fought tooth and claw for what I had.
VeraL said…
I agree with Lagatta. I have no wish to live to vulnerable age. I'm tired of this 60 is the new 80 world. Pulling up the Lancet, a woman of 71-75 with no pre-existing conditions, has a slightly lower risk of dying of this virus as a man with 1 condition, like high blood pressure or obesity, 15 years younger. But you never hear the word "vulnerable" attached to people under 60 unless hugely disabled. Only people over 60 must be locked up, tossed into the garbage heap of safety and frailty and being protected so you can die of Alzheimer's one day. I would rather just get on with it and take my chances of dying of the virus than live a life that's "a whole lot of nothing." I would rather live in Sweden.

You're also looking at AIDS through a historical lens. There were no treatments for a decade. Gay men had no clue if there ever would be any treatment and had to decide what their life, short or long, would look like. It's the same mindset that is prevalent among very artistic people, the musicians and artists and writers who live a short but very creative life. They basically live their lives on fast forward.
Actually, I was considerably heavier 15 years ago; my body went haywire with menopause and I ballooned despite no increase in eating crap, drinking too much on a daily basis or lack of exercise. Fortunately I've slimmed down considerably and have far fewer problems (not coronary or blood sugar, just things like athritis). I think quite a few women go through a very difficult period for a few years.

I have some very dear friends over 80 sound in mind and remarkably found in body. And thank the cat goddess, I can always pull the plug rather than being those poor creatures in care homes!
Duchesse said…
VeraL: "You never hear the word 'vulnerable' attached to people under 60 unless hugely disabled".
That is not my experience. Besides disabled persons, I see the term applied to: persons and families living at or below the poverty line, refugees, trans persons, low-income single-parent families, incarcerated persons, and migrant workers—as well as other groups.

One will live on one/s own terms, but it is not all about the self. The men, women and children who died during the AIDS epidemic left behind many to grieve. I am one.
emma said…
Yes, this 100%!
I'm doing a big rethink about what the next couple of years will look like.
I'm 63 & have severe asthma. Can currently work 50% at home and the public has been temporarily excluded from the office, which lessens the risk.
Will I retire sooner rather than later?
All the cultural organizations where I thought I'd volunteer when I retired - their festivals are cancelled. In the last two months I've leapfrogged over several stages of life to "at risk senior!"
The libraries are closed.
I'll keep working for now and looking for options.
Madame La-Bas said…
I am starting to think about when I might be able to travel again. As we reach a certain age, there is a lot of uncertainty. My 88 year-old mother fears that she will not outlast the pandemic. She may not. We need to take the best precautions we can for ourselves and for others.
Yes, it is very frightening. By the way, I have no death wish whatsoever, on the contrary. But rather dead than in a "care home" eating reconstituted mash.

I most certainly miss my gay friend whose "outlaw" sex life was so at odds with his intellectual life, and that simply wouldn't make sense to me, but I'd certainly not have told him how to behave.
Beth said…
Thank you for this thought-provoking post. I intend to be very prudent, to protect myself and my more vulnerable partner, and to avoid burdening the healthcare system, but because I have a rich online, intellectual, political and creative life, I'm hopeful that I won't decay into some sort of pale and useless version of myself while we wait for scientific advances. It's really hard for me to not be singing with others, having friends over, traveling -- but relationship and inspiration are still there, even if we have to look and work harder for them. I think I owe it to myself and to younger people to try to be an example during this time.
Murphy said…
A very thoughtful and thought-provoking post, thank you. I’m 64 with no preexisting conditions, so my nurse daughter assures me that I have less to worry about than most people. On the other hand, my husband is a year older and has two preexisting conditions, so we’re being very careful, and staying home except for necessary errands and outdoor walks. Fortunately my job has been all online for the past 9 weeks. Meanwhile my parents (with whom I have a difficult relationship in the best of times) refuse to let me do their grocery shopping (they want to do it themselves) and are furious that I’m not visiting as usual. And bars and restaurants opened in my area starting yesterday and they were packed with people saying it’s about time they got their “rights” back. Sigh. It feels like I have to be more isolated to protect my family when others around me are taking more risks.
Tom said…
A sobering look at my near future. Thank you. Those of us with partners/buddies/nearby anyone are the lucky ones. As are readers, listeners to music, and so on. Strangely, two of the books I read a few months ago were on the topic of intense loneliness: one was Charlotte Bronte's Villette (which I didn't get when I read it 40 years ago); the other was Slaves of Solitude, an NYRB classic, which I acquired b/c I like the series. Both recommended. Eva/FS/ still using this email...
Duchesse said…
Murphy: You are living exactly what I was anticipating; thank you (not for concurring, for reporting.) It will take all the equanimity you can muster to deal with the crowding, and patience with our parents, who seem to not yet have caught on to the risks.

Eva: Thank you for jumping through those hoops to comment, and the book recommendations. I just had a conversation with a friend who quoted a friend of hers who said she had "done enough" and was planning to cross a border and visit NYC to see her grandchildren because "I am not giving up a year of the last good years of my life." I was dismayed, even though I sympathize with her longing. She was busy concocting a story that would allow her in the country and said she was prepared to be turned back but "had to try". People, honestly.
A poetic Irish response to this. Has me in tears, as does everything. https://www.theguardian.com/world/2020/may/17/solace-and-healing-ireland-turns-to-poetry-to-ease-lockdown-strain

Duchesse, I thoroughly understand your friend - a useless life is not worth living - but don't agreee with her as she could contribute to infecting others. Yes, I'm thinking back to death squads in Europe and South America as a dear friend has survived the latter, his parents somehow the former.

Fortunately I have a sweet little black cat who doesn't get into such philosophical considerations.
Duchesse said…
lagatta: I did not saythat the woman who plans to travel now is my friend.
Isabel said…
Curious is there data to support the over 60 criteria? Or even 65? From what I have read the worst hit were elderly in nursing homes. Would that not suggest over 70 at least if not over 80? Seems arbitrary and even over cautious to say over 60. Are there many 60 year olds in nursing homes? Without co morbidity I think 60 is too low a number.
Duchesse said…
This comment has been removed by the author.
Duchesse said…
Isabel: Data from various sources show Covid mortality by age. In North America, the greatest number of fatalities to date is among the oldest old in nursing homes, but nursing home mortality is high partly because other age groups (as well as healthier members of that cohort) have been isolating and most are not in institutions.

Once deisloation begins, various public health officials expect a higher community transmission rate.
Here are data for mortality by age as of May 13, 2020 from NYC. (https://www.worldometers.info/coronavirus/coronavirus-age-sex-demographics/)
Share of deaths
Age 18-44: 3.9%
Age 45-64: 22.4%
Age 65-74: 24.9%
Age 75+: 48.7%

To say that to maintain distancing for those 60 is "over cautious" depends on what you think of as significant risk.

re co-morbidity, it's a factor for any age group. Hypertension and diabetes are usually cited, and these are not diseases only of the 75+ cohort.

As the pandemic proceeds, we will be able to review more data about Covid-19 mortality, by various criteria.

Isabel said…
Thank you for the data. NYC seems to be an outlier for the US. Of course, as we get more data we will know more How is Georgia doing? They opened early. I only mentioned co morbidity because I was concentrating on the age criteria only. I think you hit the nail on the head when you say its a personal evaluation of risk that matters. There are significant deaths from car accidents. (I know virus vs. car fatality are very different) however if we are talking about risk taking on its own then perhaps people should not use cars. However, we now have more knowledge of how to keep passengers safe in cars and have come up with more solutions and tools to keep people safe in cars so people make the informed personal decision to take the risk of dying in a car accident. What I mean to say is we have gained some knowledge since the pandemic was announced and we have significant more resources available. This should allow for better risk assessment just like in the car analogy. I do not believe a bright line of 60 is optimum especially in view of the mental health impact such a line seems to cause. I personally need more nuanced and perhaps more optimistic criteria for maintaining strict social distancing. I do appreciate your conversation regarding the issue of age at all times but especially now.
while they are both VERY significant mortality rates, there is little difference between the two middle ones.
Duchesse said…
Isabel: I encourage you to do your own research, as the situation changes so quickly. I chose NYC because of the large sample size.

Re the car risk analogy: We have designed safer cars but cannot presently design a virus, and are only beginning to understand this one. I only drive or am a passenger in a car as an exception. We have not owned one for 8 years and though licensed, I rarely drove for 30 years before that. I'm not fearful, but prefer other modes.

lagatta:That was my point: a fatality rate of 22% to almost 25% percent is something to think about.
Lynn said…
I am concerned about the quality of data we have. It is clear in many places in the US that the data are being manipulated and deaths not reported so that people will not be scared to start shopping, going to restaurants, etc. Our leadership has even been open about that. This makes decision making and risk assessment for those of us over 60 even more difficult. One of the ways our age group can be most effective in the US where we outvote every other age group is to insist that the number of cases and deaths be reported accurately, and that as we learn more about comorbidities that be reported as well. The more we know they better decisions we can make.
Duchesse said…
Lynne: Agree. I prefer to use a few sources I respect rather than a patchwork, and focus on my city’s—which is the epicentre for the country. As an old friend who became an expert in biostatistics always said, «  In God we trust; all others, bring data. »

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