Medical update: It’s all good


While showing me a graph, with the trajectory of my health over the past few months, my endocrinologist  remarked, “I wouldn’t have sold you life insurance in January!”

Point taken.  It was a rough patch, to be sure.

But now…

CD-4 count: 400 (the same level as when I was first diagnosed HIV+); up from 270

Viral load: undetectable (no change)

A1C (blood sugar): 8 (above the ideal 7 but greatly improved from my insulin overdose episode)

Weight: up (I can’t remember either the former or current weight)

 

I’m still feeling a little wobbly on my legs so I’m using a cane, more often than not, and I have a walker to take with me to the grocery store for heavy loads.

All in all, I am shaping up nicely for spring!

Out for 35 years


Reading something which noted that 1981 was 35 years ago jarred me into realizing that it was three-and-a-half decades ago this very month that I officially came out of the closet, by which I mean letting my family know that I was gay.

It was in the context of the uproar over the bathhouse raids by Toronto police in which, but for luck, I was not involved.

This weekend’s cold temperatures remind me of the cold nights spent protesting the raids, a fear of being seen on the TV news which propelled me to pen a letter of coming out to my Mom and Dad.

It was met with a phone call from Mom in which she assured me of their unconditional love for me (after I had imagined worst case scenarios of a different kind for no reason).

35 years!  I was a fresh-skinned 21-year old then on the eve of the first cases of AIDS being reported in the United States.  I managed to escape the first waves of death which swept through the community and now count myself among ‘long-term survivors’.  AIDS still seems very real to me but I no longer take for granted that I will die prematurely.  I’m trying to accept that there are some things I just don’t know.

There have been other things which could have, and could yet, kill me but, for now, I am trying to re-experience the energy I recall from those powerful days of protest in 1981.

Honours from ACT


It was both an honour and a pleasure this past Monday to receive an award for 25 years of service at the AIDS Committee of Toronto’s Annual General Meeting.  I must confess to feeling like I have drawn on more services than I have provided but the 25 years is amazing, even from a survival point of view!  Here I am with ACT E.D. John Maxwell:

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‘Times Have Changed’ at 40 Wellesley St.E. #HIVnow


40 Wellesley St. E.
40 Wellesley St. E.

The latest ambitious awareness campaign by the AIDS Committee of Toronto (ACT), #HIVnow, “asks big questions, puts forward honest answers and issues clear calls to action”.

The “Times have changed” theme comes to mind as I watch the slow demolition of 40 Wellesley Street East, a medical offices building where I learned of my HIV status in 1989 and received medical care there for several years. Hundreds – thousands even – of HIV/AIDS patients were seen in these offices at the height of the crisis in the early 1990s.

If those demolished walls could talk…

Guess what’s next for 40 Wellesley.

Leaving Unit 503 upright


I am surrounded by boxes, both packed and empty. This week I am changing units within my housing co-op, moving house for the first time since 1992.

When I re-located to this building 23 years ago I thought, with good reason, that my death was imminent; that I would be here a short time before being discreetly carried out, feet-first, in a black bag – as had been the case for several other friends with AIDS before and since.

Diane Frankling Co-operative Homes, formerly Bleecker Street Co-op, has historically given priority for its rent-geared-to-income units to people living with HIV/AIDS, persons with mental illness (I am, therefore, dually qualified) and women escaping abusive relationships.

Just one floor up and across the hall, dominant morning sun will be replaced by the afternoon’s; plants will need to be re-positioned accordingly. Rather than a view of Cabbagetown roof-tops I will look on to another apartment building and, to my left, a partial but exciting view of Toronto’s impressive skyline.

While I have purged a lot of stuff, and packed quite a bit more, the move just one floor up has me in a sense of suspended animation. Clothes remain on hangers because, well, they can be carried upstairs just like that. It’s the same with my plants.

What I can only pack figuratively are 23 years of memories from here – the early house parties, the cats which I have loved (Sujata is only beginning to suspect we’re up to something), the recovery from my 2003 crash (John Kerry, I so relate to your broken femur!), and the guests and uninvited who have plopped down on the dump-bound sofa.

The weight of these years is affecting me emotionally, positively and poignantly, but it is a marker of the new era of HIV/AIDS that I am leaving Unit 503 walking upright.

World AIDS Day 2014 has come and gone and something had me rattled


Here’s an excerpt from my Facebook feed today after I heard Shaun Proulx on CBC Radio’s Metro Morning referring to his blog on HIV Divorce.

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I have AIDS, and have had for many years. I can’t seem to walk that back, to HIV only, so I think of myself as surviving HIV/AIDS. While HIV may never lead to AIDS for some, for other old timers like me that genie seems out of the bottle. I’m rattled by Shaun Proulx’s call for a “divorce” between HIV and AIDS because they are linked and to leave AIDS apart feels further stigmatizing.

Vera Ingrid Tarman, Clare Nobbs, Marie Robertson and 12 others like this.

Lori Knight-Whitehouse See my comment in one of your later posts.

Kenneth G. Chaplin Saw it – and thanks!

Sandra Millar In my opinion, those of you who have been long-term survivors should be “revered” (is that the word?) because you have been through hell to keep going. What with changes of meds that cause your body untold havock and struggles to keep going, with every day a hardship, medically, emotionally and financially! The younger generation who are walking on your back, and others like you need to spend a day with you, to be even begin to have an opinion! And this from a friend and ally, who knows she has only scratched the surface of what this terrible disease does to this living with, and those affected by, who journey with friends whose struggle still ended in death and those friends I know struggle every day…with all the above and more, including some with survivors guilt. I rest my case, for today…but wish I was able to put this on everyone’s post. I KNOW that if I had to walk a mile in your shoes, I would not be so strong or resilient! My thanks for being you – to you and all the others I know…and have known, as just because they died didn’t make them any less in my eyes! hugs, Sandra Millar

Karen MacKay Llewellyn Wanting to affirm the remarks made by Sandra. You have walked the walk with such courage, Kenn. It has been and continues to be so challenging. You have taught us all so much by permitting us to accompany you on this journey. I am ever so grateful to have been invited to share in the struggle and the triumphs. Blessings, my friend!

Tammy Leslie hey buddy xxxxxxx

Kenneth G. Chaplin Such a gratifying feeling to read your support, Sandra Millar and Karen MacKay Llewellyn. Overwhelming!

Paul R. Gilroy Tx Kenn, I am glad to have the opinion of someone (yours) who knows and has experienced the full dimension of HIV / Aids and its impact. I had the same thought that the two are inseparable listening to Sean on the CBC this morning, it seems to me to be wrong to consider that HIV and Aids can be so casually divorced.

Clare Nobbs I heard the interview on MM this morning and was uncomfortable with what SP was saying. Didn’t seem right. It was an argument of privilege to me – and one that was filled with holes. Oftentimes, I think, such arguments come from internalized struggle. And that is not a good place to speak from as it is using the oppressor’s tools against one’s own/self. I can’t say I’ve delved into this too deeply, but I can say that I have the deepest – and fondest – respect for you, Kenn, and the road that have walked these many years I have known you. love, peace and respect to you.

Kenneth G. Chaplin Oh, so many hugs for and from Paul R. Gilroy and Clare Nobbs. Thank you. I have to remember that health outlooks are much different to today’s newly diagnosed by which I mean post-drug cocktail and the simpler treatments nowadays. Privilege, Clare, yes that rings true.

I’m Thinking, “This is Going to Hurt!”: On ‘How Not to Deal with Grief’


From my friend Betty Ann on her Facebook page:

“This article deeply moved me…as I suspect it will for any of you who have been impacted by the kind of grief associated with multiple loss, deaths due to overdose and or HIV/AIDS. Rather than just clicking on “like”, can you write a few sentences in a comment? Maybe just something about how this article landed with you? Guess I’m lookin for a little peer support here…”

I know there are many stories related to this piece which could be written. Don’t be afraid to jog my memory or ask a question.

I URGE you to click on the following link and read:

Guest Post – How Not to Deal with Grief

Remember those days when we couldn’t decide how to go to a funeral and make sure a dying friend was okay?  Open casket versus closed? Cremation versus traditional burial?  Would it be okay to go a little over the top in church?  Someone else is sick?  I thought he’d killed himself.

“…those days…come screaming back out of nowhere. I don’t live with it; it lives in me. It is a part of me and makes me what I am. That does not mean I want it. I am not alone in this. And I am not alone in finding that loss accumulates and is sticky and hangs together like lumps of tar and sticks and sand on the beach after a storm.”

“…these thoughts, the ones of dead friends and loved ones, are in the heap in the back corner. They lurk behind the door with a skull and crossbones saying; “Fuck Off, Asshole,” in 72 pica. Then in smaller type: “You know who and what’s in here, so why don’t you just walk the fuck away?” And every so often I walk through that door for whatever reason and it takes days to recover.”

“People died around you. Repeatedly. Let me emphasize: Repeatedly. There were no protease inhibitors. No Truveda. Just blind hope, determination, anger, solidarity, organizing, guesswork and gambling on whether to take a drug or wait for the big one that will work — and die waiting. This was not a time of long-term sustainability.”

“I am not perfect. But I have found some happiness in my life, not by achieving resolution, but by acquiring wounds, then healing some and developing scar tissue that will always be there, and by just keeping going.”

My laptop feels too small for what I want to write. I need a full-sized keyboard to spread out my fingers as on the keyboard of a grand pipe organ. I know the feeling of not wanting to go through personal items and photographs of friends lost. But I also know it’s an irresistible tug sometimes. I more often than not know what it means just to still be here when I could have, should have been dead, with only analogies of Vegas or God’s perverse selection process as explanation. I reject both.

I know that “just keeping going” has taken a lot of courage for many people, so why not me, too? I accept that there have been times when it seemed much simpler to die than to just keep going. I’ve even wished I would have died long before now. But there are new things to work on, new struggles to wage, even while bearing all the scars of having nearly shit myself to death.