Tag Archives: chronic conditions

Never Give In?

Posted on by
Reply

In the midst of a novel, I stopped dead in my mental tracks when I read, “She had never given in to her disability.” “Given in”? As though disability were a foe or unstoppable force.

To declare that statement foreign to how I relate to my disabilities is a drastic understatement akin to declaring a drop of water the equivalent of the Pacific ocean. (How’s that for dramatic hyperbole? Hold on to your socks because there’s more.)

If the common understanding of disability is a “force” in “opposition” to me, then it makes complete sense that people think I’m amazing for walking out my front door. After all, I have made the Herculean effort to fight against something keeping me in place. No, actually, trying to push me in a different direction.

Our collective consciousness is full of entities in opposition — good versus evil, freedom versus dictatorial constraint, healthy versus infirm and even smile versus frown. No wonder we cannot escape Hollywood’s determination to continue to use disability as a metaphor for evil, a social understanding of disability as life-constraining, the notion that a physical condition is contagious and even that having a disability automatically categorizes you as unhappy. We are in opposition to our condition as good fights back evil, freedom overcomes totalitarian regimes, health is a goal we “achieve” and happy shines forth from sorrow.

What a load of manure. I’m no more fighting against my disabilities than you are struggling to keep your cells all together in the form of your body. You just are and disability just is. Fact, people. Fact.

An Inconvenient Truth

Posted on by
1
  • Social isolation has been a blight plaguing me for a long time. Ten years ago, when I first began attempting to eradicate it, I acted as if I was the cause. Obviously, I was behaving in a socially abhorrent manner to the point that people actively avoided my company.

Informed by the feedback of others and anything pop psychology had to say, I began rehabilitating my personality and behaviors. “Maybe you talk too much.” “You should have a list of possible topics to discuss.” “Are you showing interest in other people?” “It is your job to put others at ease.” “You need to be understanding of other’s ignorance, educate them and then be patient.” “You need to try harder.” Everything I tried failed and I thought this meant I had failed.

Nobody likes to see themselves as a failure, so I searched for another explanation and began considering how chronic illness limited my outside activities. Without a job and active lifestyle, I was not encountering The Magic Number of People required to find close friends. Armed with this explanation, I got creative about using my energy and became more active in the world beyond my doorstep.

Guess what? Stepping outside did not launch me into a crowd of close friends. Because I kept hearing that doing what you loved would bring people like you into your sphere and be transformative, I modified my approach. Still wasn’t surrounded by a circle of intimates.

I went back to the hypothesis that chronic illness was simply too limiting and added to it. Perhaps blindness’s impact on social interactions, making eye contact, facial expression and nonverbal communication impossible, was severely limiting my ability to connect with others. Concluding the situation was beyond a mere mortal’s control, I gave up.

With nothing better to do, I began working on building my skill set by volunteering and joining a blind group. Now busier than ever, I still cannot find intimate connections, so maybe it isn’t my chronic illness’s limitations? Immersed in a community equally unable to engage in nonverbal communication, I did not suddenly sprout intimate connections, so maybe it isn’t blindness’s fault? Eighteen months of psychotherapy and the only consequence is a therapist who enjoys my company to the point that I had to ask him to enjoy me less and treat me more, so maybe I don’t have a huge personality flaw?

Here is the inconvenient truth that everyone on the planet seems to wish to avoid admitting: Disability makes non-disabled people uncomfortable and there is not a damned thing the person with the disability can do about it. Yes, as a society, we have made great strides in accepting physical difference, but we have not reached the point where having a disability is to simply possess another form of human variation. Eventually, we will arrive at the place I dream about, but not next month or next year. This type of fundamental change moves slower than glaciers and all I can do is my part to keep the process headed in a good direction.

You know what would really help? People not pretending we live in enlightened times where my disability isn’t leading to social isolation. The creative delusions that it is somehow my failing and thus my problem to fix is not only untrue but actively damaging to me and more importantly millions of others. I’m not asking anyone to become my new best friend, but could you at least stop believing this is about me? It’s about all of us.

 

This year I again proudly participate in Blogging Against Disablism Day 2014. For more information, please go to:

fhttp://tinyurl.com/BADday201Blogging Against Disablism Day 2014

The Ring Theory

Posted on by
Reply

A while back, I came across a piece by Susan Silk and Barry Goldman that talks about how to behave in relation to another’s trauma. 

http://touch.latimes.com/#section/-1/article/p2p-75241622/

 

Think about personal trauma like this: You drop a rock into a lake and that stone is the ordeal landing on the head of the person experiencing it.  The ripples move outward, water closer to the impact point rippling more significantly than water a foot away. 

 

Now apply this to personal trauma.  The closer to ground zero, the more a person is affected by the trauma.  A significant other would be close to the center whereas a next door neighbor would be further away.  In this way, you can gauge the degree to which any given situation is impacting others and place yourself within that structure. 

 

The rule is to not complain or otherwise vent your feelings about the situation on anyone closer to the trauma than you.  Instead, dump your feelings about the situation on someone even less affected than you.  To those closer to the center, give love and comfort and support. 

 

And the person in the center whose trauma it is? They get to do and say and feel and be whatever they want.  That is the benefit of being at Ground zero – nobody complains to you, gives advice, judges your behavior or otherwise sends negativity inward toward you. 

 

Obviously there are limits to this, like how long the person experiencing trauma is at the focal point.  Life moves on, people adjust and eventually things shift.  If your beloved cat dies of old age, you probably aren’t at the center of things as long as you might be if your beloved cat was hit by a car at age five.  Degree of trauma matters in terms of duration of the complain/support rule. 

 

Having been at Ground zero more than once in the past few years, I can say with absolute certainty that people who respond to me with negativity or their own fears and reactions to my situation are not helpful.  In fact, it often causes me to shut down and relegate that individual to a more distant sphere of my life.  Make me cope with your feelings about my predicament? Go away.  Decide you know better about my situation than me? It’s time for a friendship vacation.

 

Silk and Goldman do not touch upon one aspect of the situational dynamics.  When those you would count on for support instead offer negativity and judgment, you are in a complicated place involving rocks and hard things.  If you push the person away, then you lose any hope of gaining support in the future.  If you tolerate the suboptimal behavior, then you open yourself to more of the same.  At a time when what you need is propping up with love and comfort, you are not only getting something far less helpful, but you must also figure out how to handle it.  Coping resources already stretched to the breaking point by the trauma have to now also withstand interpersonal drama. 

 

Ground zero needs to be about the trauma not drama.  Offer love, support, foot rubs and pot roast.  Refrain from offering up yet more for the person with the trauma to handle.  Make it your unspoken gift to them.

 

Apples and Oranges

Posted on by
Reply

A member of a musical duo I adore was chatting with me after one of their shows, which we have done many times before. He asked how I was doing and I replied that it had been a struggle of late.

As he put his hand on my upper arm, he intensely said, “You need to sit and really listen to the new CD. It’s all about that.”

I took it home. I sat. I listened. I did that pretty much every day for three weeks. I still couldn’t connect.

It wasn’t that the music lacked emotion or that something didn’t quite come together. It’s a great CD and the artists in question conveyed their message well. I just couldn’t identify with it. At all.

I had an extremely hard time with this fact. A musician I respected felt his work would speak to me. Why couldn’t I hear it?

It took five months for me to figure it out. They’re singing about apples while I’m trying to juggle oranges.

The music conveys the inner struggles around love and relationships, not so much about love gone wrong or love unrequited, but about how one’s thinking can keep you from finding love. Clearly someone went through emotional hell trying to discover why he longed for love but couldn’t quite embrace it. It has a more general message about hitting bottom emotionally and then finding your way through it discovering that the journey through the awful helps you better appreciate things. At it’s core, the music is about inner struggles to overcome internal obstacles.

My two ongoing issues are my medical complications and social isolation. Obviously the problems my body has developed cannot be solved by an emotional struggle. My esophageal muscles will not become strong because I searched my soul, figured out the problem in my head, and fixed it. In other words, it’s solution is not within myself to discover and implement. It requires doctors and tests and surgery and living with side effects and hoping it all works as advertised.

Social isolation seemingly has a more emotional basis for all I need to do is get out there, overcome my shyness or other maladaptive social behaviors, and I’ll meet people. That’s all within my control to fix, right?

What happens when you do all of that and the only result is frustration and a bone-deep belief that it’s not you? With every fiber of my being, I have come to believe that my social isolation is a factor of how others perceive me, social norms, societal beliefs, and how what we are consciously or unconsciously taught shapes our thinking. I could be Mother Teresa or Hitler and the bottom line wouldn’t change all that much.

In case you need a little bit of proof, I am more active in the world than I have been in probably twelve years, yet it has not had a perceivable impact on how many friends I have, the quality of those friendships, or dating. While it is true that many more people know who I am, that has not translated into meaningful human connection. In fact, in many ways being more socially engaged has only served to highlight my inherent aloneness.

So, while the musician was kind having the best of intentions to offer me solace, it didn’t work. They sing about apples and I juggle oranges –both fruit, but very different. American as orange pie? Fresh squeezed Florida apple juice? Okay, maybe the second one if Florida had the appropriate climate.

Hope

Posted on by
Reply

While introducing a song entitled “Hope,” a local San Diego musician gave an inspirational pep talk that exemplifies what I have heard time and time again. To paraphrase: Everyone goes through hard times and the only things within your control are your attitude and your effort. With a good attitude and if you try hard enough, you will get through it.

He’s not wrong, exactly. He’s just talking about some subset of people to which I do not belong. They are folks whose “hard times” can be gotten through with the right attitude and sufficient effort. I’ve watched it happen, so I know attitude and effort work for many. I’m just not one of them.

Attitude can accomplish a great deal, like when I focus on what I might learn from a situation or the humor that exists within a predicament. It cannot, however, transform steps into a ramp. Similarly, my attitude can’t morph someone’s ignorant behavior into a more palatable experience. Being treated badly can be endured; Being denied access to something cannot be overcome by the powers of positive thought.

Similarly, effort is problematic for me. My chronic illness limits my energy leaving me with definite constraints on the sweat I can expend. Thus, I do not have the luxury of endless get-up-and-go necessary to fix misfortunes.

Perhaps the key here is what the musician meant by hard times. I’m fairly certain he wasn’t referring to the kinds of situations I encounter. Instead, he means troubles universal to all human beings such as the death of a parent, having something stolen or getting your heart broken.

What rang false as I listened to his pep talk are all the things I encounter each day that are unique to people with disabilities. Inaccessibility, lack of accommodations and people’s ignorance create some of the most distressing problems I come across. Attitude and effort cannot resolve all of them. Sometimes, I’m left with lousy circumstances not of my making and beyond my ability to fix. With them, speeches about attitude and effort leave me feeling hopeless not hopeful.

Case in point. I’m dealing with the way social perceptions of disability make friendships harder and reduce my chance of finding a mate. Emotional intimacy is as central to my mental health as calories are to my physical well-being. I cannot force people to befriend me nor can I change how they perceive me by thinking positively. If someone keeps you from food, eventually you will suffer physically. If what keeps me from adequate human connection is other people, how is that really different? How is trying hard or having a good attitude going to feed my soul?

I never know what to say to people like this musician. For them, effort and attitude work and I do not want to discount that. Unfortunately, he is talking about peeling apples while I’m trying to peel oranges.

So, I sit in the audience feeling like I do not belong alienated by someone who is just trying to help people get through tough times. I become the invisible other apart from the crowd I inhabit and isolated from the human experience being referenced.

With Water, Rudder and Pilot

Posted on by
1

It’s strange how sometimes it literally feels like a switch is flipped inside your head and everything changes. You were just passively sitting there, taking in the world, when between one breath and the next it’s all different.

This happened a couple of days after I wrote

The factor changing everything was A PLAN. Funny how that makes it all easier on someone like me.

Actually, I’ve come to realize it’s not all that astonishing that plans make someone like me feel better. A large part of my life has been without parameters – I don’t know how much energy I will have each day, I don’t know what barriers to access I will encounter, and I don’t know what my body will do next. Most people have at least the illusion that these things will remain more or less constant. I think maybe that’s one of the often unacknowledged differences between non-disabled and disabled people – the illusion of constancy versus the hard reality of the unknown.

Non-disabled people have come to count on a world that works in certain ways because by in large it has done so in the past. They wake up with about the same amount of energy and they can accomplish things without crazy obstacles being thrown in their paths. I refer to it as an illusion because people get the flu, cars get flat tires, people get laid off, bones get broken, houses flood, stores run out of diapers, and total chaos is entirely possible. It’s just not likely and people tend to count upon that and learn to cope when it’s not the case.

I cannot move through the world playing the odds that it will be smooth sailing because it’s so often not. I’m more likely to have wrenches thrown in the works and need to be prepared to handle such eventualities. My reality is unpredictability and my best coping strategy is preparedness.

I guess it’s the difference between walking on a tight rope knowing a net will catch you versus walking on it not knowing if there is a net. Nothing in your skill level changes, but the difference is huge.

My doctor laid out the steps for sorting everything out. Nothing is even infinitesimally more certain, but knowing the part somehow makes it easier.

I’ve been accused of being a control freak. and, to some extent, wanting to be in control is a feature of my personality. However, how much lack of control do I live with on average? Wouldn’t that tend to make me want to be able to control what I can? To assign random numbers to the situation, I have maybe 30% ability to predict events in my life. A non-disabled person might have more like 55% ability to foresee the future. So, wouldn’t I be prone to trying to make my number closer to that of a non-disabled person? Am I a control freak or just a person wanting the security of knowing whether or not there’s a safety net?