All of the Somebodies

Before I begin I want to say that if you’ve become accustomed to my constant comments and I’ve become inexplicably silent on your blogs, I’ve had some issue commenting. For some reason, WordPress doesn’t think I’m logged in to my account even after I log in to my account. I can post. I can “like.” I just can’t comment. Sometimes. Most of the times. But not not all of the times. I can comment on all of the people some of the time; I can comment on some of the people all of the time; but I can’t comment on all of the people all of the time. And if I haven’t been commenting on yours, you’re probably some of the all. But probably not all of the some.

And before I continue, you might have noticed over the past few weeks I hadn’t posted as often or as regularly. As regularly or as often? I’m sure it makes a difference as to which comes first but not to the world which remarkably kept spinning regardless of me posting often or regularly. Or regularly or often. Anyway, I hadn’t. I hadn’t had much to say.

I think I might have not had much to say because I hadn’t been feeling myself. This was odd because so many people I have run across the past few weeks have taken what seemed to be pains to tell me how well I looked. I’m not sure why that surprised so many. I don’t have a flesh eating bacterial infection which with maybe gross morbid obesity are the only conditions that could make one not look well. Just about anything else isn’t readily evident. Well, just about any other chronic condition. You give somebody a full blown summer cold with the sneezing and the running nose and the watery eyes and that person will look like the definition of not well for a week to 10 days. But if you saddle somebody with a chronic condition, particularly one controlled with medication or treatment, that somebody tends to look like everybody else.

I almost cringe when I see the commercials on TV for this month’s miracle cure in which the person playing the person in need of the cure looks into the camera and says with all the sincerity a poorly paid commercial actor, “but I look normal.” Well, guess what? So does everybody else. It is not only the rare diseases that masquerade as normal. I bet you couldn’t pick out of the crowd somebody with high blood pressure, diabetes, high cholesterol, COPD, or hypothyroidism.

I also almost cringe whenever I hear people use the terms “chronic disease” and “chronic illness” when what they really want to say is “this thing I have that nobody understands and took me a dozen doctors before I found one who understands it.” I can say that because I’ve probably done that. But really, if you’re going to add for special consideration or exceptional treatment because you have a “chronic illness” you better include somebody with high blood pressure, diabetes, high cholesterol, COPD, or hypothyroidism because those are just as chronic.

But I digress. I guess I haven’t written much because I haven’t felt like myself. Don’t worry though. The world indeed will continue to spin and I’ll soon snap out of it and will be back to rambling in no time.

Until then, I think I might try to comment on this post. That should really confuse WordPress.

Figuring It Out

You haven’t read anything from me since early last week. It’s not because I got sick and ended up I the hospital or anything dramatic like that. I just haven’t been feeling me lately. I’ve not had a bad week but I’ve not had a great one. Sometimes that happens. To look at me you’d probably not notice much, if any difference. Most of the time I look neither disabled nor chronically ill, yet both of those I am.

Neither of those necessarily has anything to do with the other of those. I, you, or anyone else can be one, the other, both, or neither, and it would all be perfectly normal. Except for those who are not perfectly normal.

If I had to pick which to be I’d go with the neither option. Being chronically ill is a little easier in society. There are lots of support groups for almost any chronic illness you can name, from “basic” high blood pressure to the more exotic diseases and conditions of which two have taken residence in me. Most chronic illnesses do not result in a disability but the ones that do quite make up for that vast silent majority of those that don’t. Even those leave most people looking like there is little, if any wrong goings on under an otherwise fairly healthy looking skin.

Being disabled is also no picnic. I’m lucky that I still have most of my abilities available. I might be able to imagine a world where I am dependent on others for daily functions that you take for granted like washing behind your ears or making a cup of tea. But I can’t imagine what it’s like to be dependent on people’s foresight and planning to permit me to do those other things you take for granted like opening a door or stepping up onto a curb.

Whether overtly disabled, like a paraplegic in a wheelchair, or with a hidden disability that doesn’t affect mobility until you’ve taking the first 30 steps then can go no farther, there isn’t a whole lot of acceptance and accommodation going on out there. Wearing ribbons and outlining parking spaces in blue just don’t add that much to my quality of life. Sorry.

If you don’t read “Help Codi Heal” you should. Codi is a young wife and mother of three who was living her life when she was injured in a fall two years ago and now is living her life in a wheelchair. Because she is seen differently now, in a recent post she wondered how she would teach her children to accept life’s differences. Her dilemma came as she wondered how you teach acceptance of differences without pointing out the differences. Her not quite 4 year old taught her children don’t have to be taught acceptance. They are naturally accepting. So then, the new dilemma is how do you get them to stay that way?

NoHPaccessI think the answer is, you don’t. Leave it alone and let the children grow into being accepting adults organically. They won’t turn out to be ogres. I’m certain the amount of non-acceptance is directly proportional to a society’s extent of sensitivity training. The more we try to “teach” acceptance, diversity, inclusion, and affirmation, the more we turn away, divide, exclude, and deny.

Our attempts at equal rights for anything have never really succeeded. We manage to call so much attention to the inequalities and attempting to right past wrongs we never get around to actually addressing the actions that made the thing wrong.

Let me tell you a true story. In 1972, I applied for a summer job at the local steel mill. That was when many companies were feeling pressure from regulators to comply with what was then called affirmative action, ten years after the regulations went into effect. I went through all the necessary applications and tests and was in an interview with the personnel manager who told me that he’d love to hire me but he really needed “a black or female student to even things up” for that summer. No discussion of my ability or inability to do the job, just what he needed to do to “even things up.” That phrase stayed with me and at every job I ever applied for in the next 40 years I heard it in my head. I always wondered if I’d be competing against any minorities and would I be unfairly dismissed because I wasn’t one. Real or no, that was a perception that stayed with me for a lifetime.

Forty years later when I was the hiring manager, I was required to give each applicant a form to voluntarily complete after the interview. It asked the applicant’s sex (male, female, other), race (optional), ethnic background (of a select handful), and veteran status. This was sealed and sent to a third party to tabulate to determine if we were interviewing from a pool of applicants representative of our local population. No question of the job we were interviewing for, education or experiential requirements for the job, or if the applicants who responded were representative of the population. Real or no, pressure was felt every time I had to make a decision among applicants of diverse backgrounds, even if their professional backgrounds were also quite diverse.

How do we address the elephant in the room? If you ask a roomful of 3 year olds they would probably say, “Look, an elephant! Let’s play.” How do we get the three year old grow up to be 23 with that same innocence and acceptance? Just leave them alone.

They’ll figure it out.

 

Looking Good

I’m going to do something today that I usually don’t. I’m ranting. Well…not exactly ranting. A rant implies wild and impassioned speech. I may be passionate about a bunch of stuff but I’m not wild. I’m not even undomesticated. So I’m not exactly ranting but I am upset. Maybe even a little annoyed.

I just read a post – no, that’s not true either – I just read two-thirds of a post, supposedly to make me, as one with a chronic illness, feel magnanimous towards those who have the nerve to say to me,  “You look good.”  Apparently before I had the benefit of the sensitivity of whoever wrote that drivel, err…. that post, I was supposed to be bothered, irked, and/or insulted by that comment. Really?!?

Yes, I have a chronic condition. Three actually. If you’ve read this for a time you know I have kidney disease and am on dialysis (and the specific target of the aforementioned post). I am also told that I am a cancer survivor though one really never survives as much as finds a way to eliminate its immediate danger. For me that meant the physical removal of the cancer and along with it two and parts of third internal organ while now still learning how to live without otherwise vital body parts. The third is a one of those rare diseases that is so rare you don’t even get to see commercials on TV for drugs that might or not might not improve my chance at a normal life. Instead that one has been kept at bay for 15 years or so by a relatively dangerous drug regimen that probably helped me join the ranks of the first two chronic conditions that I mentioned but at least it kept me alive long enough to develop them. Anyway, when someone tells me that I look good I say thank you. Apparently I’ve been doing that wrong.

If I read the part of the article that I read correctly, I read that first I should consider that the person who is telling me how wonderful I appear doesn’t mean anything insensitive by it. He or she probably doesn’t know how painful and depressing my ailment is. Ailments are. Next I should consider exactly how well I know this person. Perhaps some people are mistaking my healthy appearance for a healthy appearance because they don’t know the full extent of my painful and depressing ailment. Or ailments. Then I should thank them for their thoughtfulness but gently remind them how painful and depressing my ailment really is. Are. Is. I’m not sure what I’m supposed to do after that because that’s when I threw my tablet across the room. (After making sure I was aiming it at a very soft pillow. I might have been annoyed but I’m not crazy.) (Not even wild.)

So, since I was unable to finish that drivel, err…. that post, let me tell you how to respond when someone comes up to you, whether or not you have a chronic condition, and whether or not he or she does, and says, “You look good.”  Say thank you and repay the compliment.

By that way, you’re looking pretty good. Have a nice day.