The Unreliability of Wellness

I tend to be a person who thinks of what I can do rather than what I can’t do.  I tend to look for the joy in situations rather than let myself be unhappy.  Just for today, I am allowing myself to do something I have never fully done before – think of what I can’t do.   I sometimes start along this path, but become overwhelmed by the sheer enormity of what I can’t do.  Then I have to stop simply to spare myself from the magnitude of it. 

First, there are the things I have never been able to do.  These include things like snow skiing, water skiing, digging a hole with a shovel, holding a baby on my hip, sitting cross-legged, being pregnant or giving birth, playing contact sports, running races – things like these. 

Second, there are the things I once could do, but no longer can.  This list is so much longer.  These leave a sorrowful place in my heart.  I once could ride a regular bike, sit on the floor, run, climb a tree or ladder, walk a mile or two, sit on low furniture, walk on soft sand, wear flip-flops, ride a horse, go canoeing, swim in a lake, roller skate (although that always was a struggle,) bend and pick things up from the floor, lift heavy boxes, go camping and sleep in a sleeping bag, climb stairs, do intricate embroidery and needle crafts, hold a book in my hands to read it, open a soda can or a water bottle, walk my dog, do martial arts, manually type without having to use speech-to-text, use a cell phone without hitting multiple buttons by mistake and disconnecting, partner dancing, walking across a grassy field, mowing my lawn, line dancing, vacuum my house, mop the kitchen floor, taking a bath instead of a shower, riding on the back of a motorcycle, playing the guitar, standing in front of a classroom, eating at a restaurant (due to extreme food restrictions), traveling in any way other than a medical transport, holding a baby in my arms, singing songs and hymns in a clear, beautiful voice, and even working a full-time job.  It also includes things that I’d prefer not to mention, like being sexually intimate, or reliably continent.  The list is so long that I’ve only been able to touch upon the substantiality of it.    

You learn to lie about how you are doing.  People ask how you are doing, but they don’t really want to know unless it is mostly good news.  I can’t blame them for that – it is human nature.

I can’t bring myself to lie when I’m asked, “how are you?” by saying “I’m fine.” so I usually respond, “Oh, I’m hanging in there.”  Or “Well, I can’t complain.  Well, I could, but who wants to hear that?” with a well-timed laugh.  It ends the query and allows me to quickly change the subject.    How many times can you tell a friend that you are not doing well, or that you are getting worse?  “How are you?” isn’t really a question in our society.  It is a greeting with an expected response of “I’m fine.” or a very brief mention of a small (and somewhat insignificant) problem.

We all have something about ourselves that we wish we could change – the shape of our nose, the texture of our hair, our figure, etc.  At times, these things can make us feel like something is wrong with us, or if only we could change some basic feature, our lives would somehow be enhanced or that true happiness would await us.  Some things we can change, by getting a perm, having our teeth straightened, or devoting ourselves to a rigorous exercise routine and healthful diet. 

For others of us, what makes us feel like an outsider cannot be fixed or changed.  People with facial skin discolorations, burns, or growths, people who are missing body parts, or who have congenital malformations that can’t be changed – these people are in a different category than those who simply abhor their Roman nose, their frizzy hair, or flabby thighs and thick ankles.

There is part of a poem I learned as a child that says, “I cried because I had no shoes, and then I met a man who had no feet.”  It is supposed to convey the message that the boy with no shoes has nothing really to complain about because others are much worse off in the world.  In my mind, I despise this poem.  While it is very sad that a person has no feet, it certainly doesn’t minimize the fact that the boy with no shoes has a problem, too.  He still doesn’t have any shoes! 

I’ve always thought that minimizing someone’s problem by reminding them that others have it worse conveys the message that your issues, your problems, are not really a big deal, and you are wrong to have even commented on them or concerned yourself with them.  Well, if I lived in Wisconsin in the winter and had no shoes, my “problem” is very real to me, regardless of who is in a worse condition. 

When we remind others that their problems aren’t really significant, we are judging their life journey, and finding their needs and concerns to be inconsequential.  I don’t believe in minimizing a person’s needs or insecurities by insisting that their perceived problem isn’t so bad.

For most of us, others barely notice what bothers us.  But for a few of us, our issues are hard to ignore.  Even the most compassionate person has a hard time not turning away from a person with severe, disfiguring facial burns.  We certainly don’t think “Wow, I’d like to get to know that person.” when we walk past them on the sidewalk.   We look away and then get away as quickly (and as unnoticeably) as we can.  (And later, we feel very bad about having done that.)

While not as extreme as having disfiguring, gruesome facial wounds, those of us born with functional disabilities fit into another category – those who used to fit in but who are now an outsider.  Those of us with progressive disabilities and chronic illnesses often find ourselves pulled from “fitting in” to being an outsider as our illness progresses, and our limitations increase. 

Many times, our loved ones react in strange ways to our progressive medical and physical changes.  Some blame us as if we caused it to happen.  Some feel that we should be able to do everything we did before if only we’d really try and stop being lazy. 

Some pretend the changes aren’t even there, which leaves the person with the progressive disability or chronic illness feeling gaslit.  And some of our loved ones think they can “cure” us, and become angry with us if we aren’t willing to try every crackpot idea they’ve read about (even though our own doctors insist it won’t help or could actually make things much worse.)  Often, it can be as if our loved one blames us if their efforts don’t lead to a cure.  This is especially difficult, because it changes (and often ruins) the dynamics of relationships, at the same time both are struggling to cope and need the support of the other so much. 

While I’m not claiming that one type of loneliness is harder to deal with than another, I am stating that there are different types of loneliness.  Some we can change, by learning social skills, seeking out like-minded individuals, or putting ourselves in situations where we will meet others whom we might enjoy.  For others, the progression of illness and the unreliability of wellness pulls us away from almost all kinds of social inclusion.   We no longer fit-in with our old friends, and we are too isolated by our medical issues to make new friends. This type of loneliness includes the mournfulness of great loss and an overwhelming sense of defeat.