When you live life with HIV, being in the moment sometimes escapes you.
There’s a lot of reflective time going over the changes that have come into your life since initial diagnosis and there’s even more time absorbed in the possibilities of what could happen down the line. You know the mind-talk… questioning if I just took my pill an hour ago or do I have a doctor’s appointment scheduled this week or how am I going to retire without RRSPs!
The span of wondering can sometimes throw off the here and now.
Of course, Truvada and other antiretroviral medications have somewhat elevated opportunity, offering us the chance to be that guy or gal climbing the mountain smiling, with the sun glistening on our hopeful grin. I’m not saying that facetiously, as I have claimed the rewards of being that guy – a moment where opportunity presented itself and I felt elevated above some of the partial greyness of my HIV world.
But the element of surprise can jolt us out of the humdrum. Life can bring a challenge, making us aware of what we’re made of and what we actually believe about being HIV positive.
This past year I have tested my endurance by delving into a physically demanding adventure.
In February 2016, I was cut off from long-term disability based on an apparent loophole.
Ten years prior, I had worked full-time as a visual artist, providing me with “deem-able, viable, workable” skill. It was agreed upon by my LTD provider that I could not work any longer in my current field of work (that which I was trained to do) in the not-for-profit sector (eight years of casework) but I could paint and should paint and need to make that happen. Here, ten years later, on a single day, I was without income, without savings and the responsibility of a daughter living with me about to graduate and go to university.
The deliberations and decisions that followed that day were frustrating, and at times detrimental to my sense of security and well-being. Yes, I loved to paint, but my memories of making and teaching art before I acquired HIV were fraught with a rolodex of images : busyness, output of long hours and frenetic energy, and moments of postponed income. Oh…and no health plan to boot.
"When I paint murals, or transform residential spaces, I am transported in the same way as when I write ... It validates me in many ways. I am a better person when I work."
Could I return to, and trust, the resurrection of my art career? Could I implement this career transition as an older man living with HIV? I had a choice. I had to decide to look at my painting skill as a barrier or bridge to my future. Well, you probably guessed that I crossed that bridge…and couldn’t be happier for doing so.
Currently I rely on self-employment income and when I do work, for sure, it can be taxing on my energy reserve; large-scale murals executed with speed and precision, to meet a target deadline.
When I paint murals, or transform residential spaces, I am transported in the same way as when I write. Everything I need is there and I run with it. I am fueled and engaged. I enjoy using my acquired skillset. It validates me in many ways. I am a better person when I work.
Recently, I had to address my mind battle with limitations. I was on site completing a contract and was asked to do more work than expected, to add an additional ten murals within a week span of time. I internalized the usual debate: will I run out of energy, will I eat properly and will I get adequate sleep? Would I forget to take my pills in the busyness of the work output?
I accepted the offer and went full steam ahead. I was able to take on the challenge knowing I could rest after the job was done. I bought healthy snacks, and gave in to the mad schedule ahead. I realized it was a “now” opportunity and to do it, would position me strategically for 2017 – financially, spiritually, physically, and mentally. My skill was tested, as was my body and mind. With the work now behind me, I can reflect on the project and see the challenges and rewards. It was worth it.
I share this to inform and encourage, not to make some blanket statement that anyone who lives with HIV should work. My experience reflects struggle and chaos, and moments of frustration and despair. It involves personal resolve and strategy and the support of friends and family. You might get the false impression, through media headlines and sound-bites, that it’s all easier now for us Poz folk now that we have life-sustaining meds. Hmmm…
Funny how when I google the key word search “HIV and self-employment”, there’s not a lot of seasoned wisdom popping up. We need more stories posted about HIV and work and retirement. While the focus seems to be on prevention, I want to “prevent” certain scenarios from happening in my own life. I want to earn my keep and keep a roof over my head.
And when I have bouts of rest between work trips and travel, I can enjoy fluff TV. Just the other day, I heard once again the seasoned wisdom of Tim Gunn on Project Runway…
Make it work!