Why am I always being told I’m bringing the whine?
First Generation by Chuck Willman
First of all, we survived the election! So for those of us—and I would think that includes a great many—living on the so-called “entitlement programs” (which we worked for and earned!) we can breathe a collective sigh of relief. Now, of course this doesn’t mean there won’t be changes made to the disability “benefits” a lot of us rely on to exist in the future. It simply means that those waving their hatchets and machetes around looking for ways to save a few bucks won’t be touching Social Security (including Disability benefits) or Medicare and Medicaid. In fact, there might be some positive changes in these programs, but we’ll have to wait and see how those running the show decide what the rest of us get.
Another hurdle was the holiday season, whatever you celebrate. I’m no Scrooge, but it can be awfully tough to enjoy all the merriment and festivities when you’re living on a small disability check. Holiday shopping is difficult—at best—and quite limited, or you’ve lost the people in your life you wish you could exchange gifts with anyway. If that is/was the case, I’m very sorry. I know my own Christmas card list this year literally took me less than fifteen minutes to complete! And each year I receive fewer and fewer cards or notes. I even have family members who want nothing to do with me. (Some of you may, too). That’s their loss!
But it’s the parties and gatherings, especially those involving family, that can be difficult for so many of us, isn’t it? For a lot of us “old timers” we get that pitiful look where people sort of want to include us, but we’re also not always made to feel terribly welcome. I’ll get asked, “So how are you doing?” (Translation: Just say “all is well.”) It’s not really that these people don’t care for me. They just really don’t want to know how I’m actually doing, and they make it painfully obvious their threshold for hearing about my reality is really low. (I’ve actually been told “how hurt my having AIDS has made a family member feel!”)
Surely I’m not the only one often getting the “pick-yourself-up-by-the-bootstraps” speech? But it is hard to hear “just be happy,” or “be more positive,” when you’re struggling to get out of bed some days. It feels like we’re frequently hit over the head with the message that we’re just not trying hard enough, when nothing further could be from the truth!
I don’t have to tell any of you about medication side effects that can be more debilitating than the illness we’re trying to fight; or what it’s like to have to “prove” you’re ill to receive benefits in the first place; or trying to make ends meet on the measly monthly checks we’re constantly reminded we’re lucky to get.
Having HIV/AIDS can be a full-time job. That’s hard, especially when you’re sick!
It’s important for us to surround ourselves with people who understand what it is we’re going through, as difficult as that can often be. When you no longer “pass as normal” it can be hard and terrifying to venture out into the world in order to meet new people and make new friends when you’re covered with lesions from K.S., or you’re body has disintegrated to the width of a broom handle, or you simply feel so miserable you don’t know how you’ll get through the day. Thanks to all the “new” drugs, more recently infected people can look good for a much longer period of time. That’s great—for them.
For some of us “old timers” our time has passed. That’s a bitter pill to swallow.
Having a positive outlook is very important. But don’t feel guilty or ashamed of being miserably ill, either. “Normal” or healthy (looking) people may think we’re making “excuses” or “whining,” and that’s their problem. We’re struggling to stay healthy, stay afloat, stay sane, and stay alive. We’re NOT “whining”! There’s a difference, and we’re doing the best we can.
Whenever you’re called a “whiner” because you’re struggling, it’s time to find a new party to attend! You deserve better. We all do!
Chuck Willman has had poetry, erotica, and essays published or forthcoming in a variety of anthologies, journals, and magazines. He is also the author of After (forthcoming from JMS Books). He lives in Las Vegas with his partner of twenty-four years.