Surviving & Thriving
"Heigh-ho, heigh-ho, it's back to work we go..." by John Hatchett
Ok, show of hands - who thought they'd ever be going off disability and heading back to work? You know, after leaving a career or job or whatever because of AIDS, and living on disability (public or private) for months or years, how many of us really imagined a return to gainful employment? Obviously, it's a loaded question. But since the advent of protease inhibitor cocktails and the sometimes dramatic improvements they bring about, more and more people with AIDS and HIV are rethinking our futures in all sorts of ways, and often right up at the top of the list is the question of a job.
A lot of us accepted long ago that we'd probably live the rest of our lives - whatever that might mean - finding things other than work to fill our days. And until quite recently, most of the time that meant a heavy focus on managing our health: all too frequent doctor visits, trips to this clinic and that lab, this pharmacy and that service provider, all punctuated with necessary pauses for rest, either to manage stress or simply because our energy levels were so low that managing our illness was a full-time job in and of itself. Even during periods of feeling relatively well, there was always the knowledge that things could change suddenly, and we could be back in the hospital or flat on our backs at home before we knew what hit us. For me, when I went out on disability a little over a year ago, adjusting to not having a job was as big a transition as adjusting to my newly diminished physical capacities. Not only could I not manage by myself the million and one tasks of daily living that I'd always taken for granted, but I also found myself missing the sense of identity that my work provided. And during the darkest days of my chemotherapy I began to assume that I just wasn't ever going to get a whole lot better, so I'd never really have to think much about employment.
Once I started taking my protease cocktail, however, all bets were off; I felt so much better so fast, I needed the first couple of months just to take it all in. But as I began to accept the idea that I might really continue to feel well for a very long time, and that my life might not be as dominated by medical problems as it had been in the preceding year, one of my first questions was whether or not to try working again. The sequence of reactions went something like this: "Oh my god, I'm actually getting better!", "Oh my god, this might actually last!", "Oh my god - now what do I do??? I have to get a job!!"
At first, I felt stymied, not knowing whether or how or when or where to start looking for a new job. First of all, I wasn't certain I could handle a full-time commitment. Sure, by October of last year I was feeling pretty damn good, but it's one thing to have great energy levels when you're not working, quite another to test your stamina against the demands of full-time employment. But part-time wasn't a good permanent solution, mostly for financial reasons. Besides, what if I picked something I wanted to do, got hired, gave up my disability benefits, and then found out I wasn't up to the job? What if I got fired?? Or what if I just hated it and wanted to find something else? What would my options be at that point? Understandably, I was thinking as a sick person, which is exactly how I needed to be thinking - I may feel great right now, but I still have a serious health condition. And let's face it, benefits and salaries and the like aren't things to fool around with.
Another anxiety was that I wasn't sure what I wanted to go back to! Being the executive director of an AIDS organization was one of the most rewarding experiences I've ever had, but also one of the most stressful. I'd been in that role 2 1/2 years and almost had to drop dead to get myself to leave, so that was one option I was definitely leaving off the table. Fortunately, I had other possibilities in my field that I could consider. Granted, for someone who's done one thing for years and years, it may be much more difficult to think about making a change, but a lot of us either can't or simply refuse to go back to whatever we were doing before.
For many people, the whole area of private disability creates additional tensions. I mean, let's face it, long-term disability is supposed to be just that - long-term (read: until you die). So how will the insurance company react when Lazarus decides it's time to get back out there and get a job?? What impact does that have on his original policy and on protections for the future? Fortunately, I got some good information and advice from a variety of sources - from my caseworker, the local SSA office (who'd've thought??), and of course, from other people with AIDS who were going through or had gone through the same stuff. I learned, for example, that I would still receive SSD benefits for the first nine months of a new job - regardless of my salary. And if at any time I had to stop working again, I could more or less pick up where I'd left off. Talk about a reasonable safety net! I was also reminded that I didn't have to decide immediately, and friends advised me to take some time to investigate the possibilities of my situation. Now, that's advice I'll offer anyone who can afford to take it, but I was sensing the approaching chill of a winter on SSD, and didn't much feel like I had time to waste!
Luckily, right about the time I was wondering where on earth to start looking, I was offered an opportunity to try something part-time, something with a minimal time commitment, to see how it felt to work again after a year of not having a job. I taught a couple of courses at a local college for a 7-week term, which ended up being ideal for my needs - not too much in the way of time, yet enough to get the feel of a more fixed schedule and for having to show up consistently with work prepared. I sailed through those seven weeks feeling as though I could take on the entire world, thrilled to discover that not only was I able to handle the work without undue fatigue, but that I seemed to have even more energy than before! I decided it was all right for me to just dive right on in and go for it.
Again, luck was with me, and very soon I was offered a position with a brand new program, doing what I probably enjoy more than anything else (work-wise, at least!) - working and training directly with PWA/HIV. My new employer knew very well what I'd been through in the last year and that my taking the job was something of an experiment, although by the time I started I was fairly confident that I could readjust easily to the physical demands of working full-time.
To my surprise, for the first few weeks I left the office every afternoon feeling wiped out. Now you'd think that 6-8 hours of sitting and talking, reading and writing wouldn't be so terribly taxing, but I was clearly out of the groove. I was awfully busy while I was on disability, too, but I had more flexibility with my hours and could rest or goof-off whenever I needed to - NOT something that generally works well in an office environment.
Eventually, after maybe a month or so, I could work a full day and not need to collapse when I got home, at least most of the time. As with everything else, there was an adjustment period, and to some extent it's still going on. My sleep habits still reflect my preference for going to bed at 2 a.m. and rising at around 10, and shifting everything ahead by three hours is something I'm still struggling with, but that doesn't have anything to do with having AIDS!
The hardest adjustment has probably been in the area of what I think of as "AIDS goes to the office." It's not a great term, but for me it refers to the AIDS-related details that intrude on an otherwise unremarkable work-day: the occasional bout of diarrhea, odd aches and pains and fits of fatigue, but primarily medications. I'm a Crixi-man, so the no food thing gets a little frustrating at times. It wasn't hard to manage as long as my time was my own, but it requires a good bit of attention in a work environment, that is, if I want to eat at any point between 8 a.m. and dinner! Scheduling and canceling meetings around my food/med schedule, I've been able to avoid actually missing doses, but I have missed a meal or two because of poor planning.
So far, three months into the new job, I'm doing well. I've adjusted to a full-time schedule and am back to the standard up-days and down-days of a more or less normal work life. The questions I asked myself before I started back to work, however, still swim around in my brain, because they have to do with issues that won't ever completely go away. What are my current needs related to disability insurance? Am I adequately protected? If I find that full-time is too much for me, do I have the option of cutting back to half-time? less? Am I making the transition gradually enough to avoid over-taxing my body and damaging my health? Do I still have the supports I need to manage the stress that is part and parcel of virtually any job, but especially one in the world of AIDS? Do I need to make adjustments to my food or med schedule to accomodate the demands of my work - or vice-versa?
All in all, I'm extremely pleased with the way all this has played out over the last several months. I've been very lucky, not only in that my health has rebounded so fully, but also in that I've been able to return to work over a reasonable period of time, satisfying myself at every stage that I was up to the challenges of the next transition. I'm working on a project I believe in and love, and I sometimes go entire days or even weeks without worrying about how long this "good patch" will last. In fact, if it weren't for the meds interrupting my day I might not think that much about having AIDS at all - well, at least for hours at a time.... Anyway, I've noticed another sure sign that I'm getting used to working again - I'm already starting to think about wanting a vacation!
from the editor
Lately I've been very on edge, angry. I am starting to realize that my whole identity has been woven with AIDS activism and being HIV positive. Hell, I tested positive before I had a grasp on what I wanted to do with my life. So now that there is talk among my friends and peers about hope for the future and prolonged lives, I am dealing with questions of what I want to do with my life. Adding to the confusion and frustration of issues I was already having, we decided to do this issue of Newsline on returning to work, which maximized my restlessness.
For the past nine years I've been so focused on escaping death that I never really stopped to think about what I would do when -- or if -- I would somehow beat AIDS. Since the year AIDS almost beat me, but obviously didn't, I've been asking myself what it really means to survive AIDS. I have realized that living with AIDS each and every day brings me to the understanding that defeating AIDS is the last thing on my mind lately.
I was so involved with the seriousness of living with HIV and being an activist that I had little time or energy to think about what I would have done had I never tested positive. I must admit, at times I regret not going to graduate school or deciding on a career as I sit among friends who are trying to decide whether to go back to the career they had before disability or try something new. I have said several times, in a joking and fearful way, "Now that `the AIDS crisis is over' I have never been in more crisis." People laugh or look at me blankly and I am sure they are thinking I am either nuts or should be ecstatic about the prospects of a hopeful future. Sometimes I bait these people with their blank stares and say things that dare them to challenge my vision of the future which still involves dying from AIDS.
I must be brave or have some romantic death wish to write that last sentence. I am starting to feel it is not politically correct expressing my fears about dying from AIDS now that everyone seems to be on the "hope" bandwagon. I even find myself sometimes saying things I really don't believe or feel because I want to be one of those people with a "positive attitude," all the while denying my feelings, and thinking that maybe I do have some morbid death wish. But living with AIDS did not teach me to look towards the future. Living with AIDS has taught me to live in the moment, and not let go of the past which keeps me company when the present is to unbearable to be in.
Don't misunderstand me, I am thrilled to be alive. But I'm struggling with this juggling act, trying to balance out conflicting images and experiences which include my knowledge that people are still dying of AIDS, and the information of new drugs that really are saving lives - but for how long?
Working on this issue of Newsline and still being alive has helped me to discover one important thing- like so many others I have had hope all along. The fantastic part of all my frustration and fear is that I am being forced to answer questions about what I want to do with this new enlightened hope. returning to work?
There's so much going on now. . . a new awareness that HIV isn't an instant life-ender, new drugs that allow people who were sick to feel "normal" again, and growing support for those who wish to re-enter the workforce. Returning to work or changing careers has become a major issue in the lives of many people who may never have expected to see 1997. As people who are challenged in a variety of physical and emotional ways--and society's view of us--we are now looking at a new frontier. (This new frontier is not a reality for all and that must be addressed as well.)
Here at PWAC we've seen many people experience a physical and emotional rebirth for a myriad of reasons. Some on disability chose to transition back into work, some chose to change careers, some to go back to school and others who found that doing volunteer work and retaining their benefits was a good solution for them. The changing face of AIDS is a myth for many, too many people are still sick and unable to even consider working; but there are so many more who are now confronted with prolonged life and who have to make decisions now that they had denied themselves years ago. The virus and medical expectations of life-span had changed our perceptions about setting long-term goals or working towards a future. Many of us bought into the idea that we couldn't or shouldn't work and then felt trapped in the dependence on benefits and entitlements. But that is changing and there are services and programs available to support a life-changing transition back to work.
We've included personal stories as well as practical information in this issue--all include valuable information about the hows, wheres and whens of returning to the workforce or to school. And we think you'll be surprised at some of the enlightening information available in these pages (we were).
pages modified: 6/4/97
