Tag Archives: Hard Things

Courage

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Whenever the word courage is launched in my direction, I winse. I am not courageous, merely a human being, trying to live my life to the best of my ability. Period.

 

Courageous people are those who do things like run into rather than away from a burning building. They have made a clear, conscious choice to do something that is optional. A firefighter could earn a living teaching history, but instead she puts her life on the line each and every day. That’s courage.

 

There are also people who do something courageous once or twice in their lifetime, like many of those on September 11th who helped coworkers and strangers make it to safety. Such individuals could have easily taken care of themselves and left others to struggle alone. That’s courage.

 

I do not run into burning buildings or help others survive catastrophes. My courageous act seems to be living. In the examples I gave above, the individuals involved had clear choices. No matter how hard I try, I cannot find an alternative option to living my life. If in living and pursuing my own happiness I have to face harder things than most, I consider that a fact of life not courage, for some roads are smooth and others are rutted.

 

While I object strongly to the label courageous, I do admit to other traits, such as determination, persistence, and strength.

 

As much as I hate to even admit it, I do display something approaching courage, but it won’t be in the way you might imagine. I have some visible scars clothing could easily cover, yet I choose to not dress in a concealing manner. From my perspective, it is my simple refusal to internalize socially normative behaviors. However, after somebody has negatively reacted to my appearance, the next time I select clothing, it does run through my mind that I could pick something else. Since I am making a choice, I guess it falls under my definition of courage. But, really, it isn’t rescuing people from buildings or carrying somebody with a broken leg down flight after flight of stairs.

PTSD. Again.

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In mid November 2013, I stopped writing in this blog. I had another traumatizing experience during a medical procedure and was unable to function normally let alone write anything that touched upon emotions. Coming back to this blog was prompted by a need to learn how to use WordPress on my iPad for the Braille Institute class. Then Braille Institute decided to establish a name badge policy and outrage worked as an awesome motivator.

Now it is time to write about what happened. As you read my recollections, please keep in mind that trauma is often stored in our brains not as narrative memory but as snapshots leading to disjointed recall.

I woke up from a trachea stretch with a tube keeping me from speaking and unable to move properly. There was a lot of chaos around me with people saying thins like, “Jen, squeeze my hand.” Nobody said things like, “Jen, I’m <insert name> and I’m going to do this.” Nobody appeared to be focused on keeping me informed of events or trying to establish a line of communication.

The tube came out quickly. The inability to move properly resolved itself. The damage was already done in the moment when I came to consciousness and couldn’t move, speak or understand what was happening, isolated in a scene of chaos. More trauma came as I learned that the situation might have been avoidable if better choices had been made by some of the clinicians involved.

Upon arriving home, I knew I would have some sort of reaction to my experience, but I wasn’t quite sure what. It took about twenty-four hours before the first signs became obvious. I walked across my kitchen and set the toaster oven tray in the sink. Then I crumpled to the ground in a ball and sobbed. There was literally absolutely no immediate cause for the tears. They just happened.

The uncontrollable sobbing became my life with tears unpredictably surfacing one to three times a day. I could be reading a book or chatting on the phone or sitting in a meeting and tears happened sort of like a sneeze – there are things you know will cause it, ways to possibly delay it, but sooner or later, it bursts forth.

Eventually I learned those delaying tactics, making being out in public somewhat more possible. Sometimes I was even able to identify what caused the tears and what emotions I was feeling. Once in a while it was even related to immediate events and not past trauma.

There is something unique about re-traumatization – having experienced trauma, developed PTSD and been successfully treated only to endure a situation similar enough to be the equivalent. then you are coping with PTSD from the recent trauma along with PTSD from your history of similar trauma. In some ways it is like light reflected between a multitude of mirrors so that the intensity of light is greater than any component part. It’s wildly exponential math. It’s emotion magnified, refracted, blenderized and placed in a pressure cooker with a faulty valve.

My entire life ground to a screeching halt. I gave up any notion of doing anything more than going to therapy, walking the dog and making sure we both ate and slept. I did things requiring use of my hands – sewing, baking, knitting – to fill my mind with something because it left less space for trauma. I didn’t visit my family for the holidays. I only talked to people who didn’t make me more upset. I kept asking for topics of conversation to be dropped before I lost it. Again.

Time passed and I was able to control enough of what was happening to begin tentatively living. Then, I knew another trachea stretch was on the immediate horizon because that’s how my stenosis works.

Part of my PTSD symptomology is that I cave in front of anyone I see as an authority figure or more of an expert in a field. Talking to doctors was harder than… crossing an eight-lane highway without a cane, dog or even audible traffic signals. I did it badly. I somehow got through it.

This time, the procedure went smoothly. With a positive experience the most recent in my memory, my life has settled down. I have been able to resume my regularly scheduled existence, just with way more therapy and a conscious commitment to real down time.

Here’s the interesting part. I’m being put back together in better shape than I was before November 15, 2013. I’m not doing it consciously, but I see things happening inside myself that I know will lead to a stronger me. I’m still having trouble wrapping my head around that.

 

A Letter to My Readers

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Hi everyone,

I have a funny feeling there are about 3 people who still remember this blog even exists, but….. Optimism, right?

I wanted to offer my apologies for completely blowing off this blog for over six months. Writing has nnnot been at the top of my priority list. Instead, I was running here and there, engaged in various community activities. I was attempting to live my life, as opposed to writing about my life.

Guess what? I miss writing more than I would have expected, a point driven home for me when I wrote something recently. I’ve been storing content over the past year or more, so I will be posting it, as long as it is still relevant, appropriate and reflective of my current mindset.

Hang on to your hats because some of this is rather intense. I’ve had quite the year.

 

The Ring Theory

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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.

 

Perspective

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At FabTherapists’s recommendation, I have joined group therapy. After two sessions, the jury is still out as to whether or not it will be beneficial. One goal is for me to intentionally work on how I interact with non-disabled people in an environment where I can get feedback. In other words, if another group member offered me help I didn’t need, I could actually question the person about the impact of my response and their initial motivation.

Last week, someone discussed how their job was making them unhappy and stressed. As they were leaving work ruminating on this, they walked past a vet who was a double amputee and “it put my stuff into perspective.”

I hate when people do this and had a rather intense response. It did not go well and the therapist said, “That pushed your buttons. Next week how about you come back and explain why.” I decided that a blog entry would be an excellent way to clarify my thinking.

My first objection is that life stressors should not be compared. Each of us is a unique individual possessing certain personality traits, backgrounds, coping abilities, resources and so forth. How we each deal with life stressors should be viewed separately in the context of who and what we are. Invalidating your own life stressors based on your perception of others’ circumstances being worse minimizes and invalidates what might be a truly distressing situation for you. It’s not fair to do that to yourself.

My second objection has to do with the way disability is being viewed. To make a comparison, an impression of what the disabled person’s life must be like has to be formed. What is that impression based upon?

All the societal beliefs about disability that we are taught come into play to create a picture of what that person’s life must be like. Often, such knowledge is based on inaccurate information, distorted images portrayed by the media, stereotypes and misconceptions. It eventually boils down to seeing the life of the person with a disability as being les happy, more burdened, less rewarding and more stressful. The person with a disability is suddenly relegated to a place of less, lacking and unhopeful.

When I have questioned those who view my life as “hard,” I hear about how it must be awful not to be able to see x, y and z, how I can’t enjoy a, b, or c, and how I won’t ever be able to do j, k or l. I *never* hear about how my life must be hard because I live in a world that sees me as less, has distorted ideas about blindness, treats me as a child and refuses to perceive my value. Which do you think is actually what I would label the “hard” part of my life?

And that’s the reason why what my fellow group member said bothered me to such a degree. They just diminished the double amputee vet to a “hard” life based on physical limits. He wasn’t a father, brother, or lover. He was someone whose life must be so stressful that it makes one grateful for the paltry stress they have. Personhood was stripped away. Value was ignored.

It isn’t that much of a leap to go from “They just reduced that man to nothing” to “Do they see me as nothing?” I struggle every day to find ways to be valued for who I am, to be connected by love and affection to other people and to live my life authentically. The last thing I want is for my life to be reduced to someone’s means to feel better about their own existence. *I* just got lost in that equation and used in the process.

To answer my group therapist’s inevitable question, “How does that make you feel?”

Devalued. Invisible. Used. Angry. Frustrated. Resigned. Tired. Hopeless. Sad.

Worthless. Scared.

Reason’s Vanquisher

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In excruciating detail, I can create a voluminous list of all the ways it is communicated to me that I am of less value because I am disabled.  I can then offer explanations and arguments to counteract each item.  My skills are sufficient to convince you that I have worth.

 

Now if it would only work on myself.  Reason is a wonderful tool that is not adequate to the challenge of conquering the emotions of irrelevance and devaluation that currently rule my insides.  My reason lacks the tensile strength to overcome the indomitable force these negative thoughts and emotions wield.

 

The depression I’m experiencing because of current life stress and mental health issues definitely saps reason’s strength.  It does not, however, generate the need for reason to be so powerful.  the might reason would need to surmount the negativity is defined by the power of that negativity.

 

What is responsible for negativity’s capacity to overpower reason?  Society in general and the individuals that act out its beliefs in particular.

 

The thoughts and feelings an individual has about disability informs their actions and those actions transmit those beliefs to people with disabilities.  Complimenting a mundane task demonstrates the lower expectations used to judge the person with a disability.  Refusal to accept a “No thanks” to an offer of help illustrates devaluation of the disabled person’s judgment.  Even running up from behind to hold a door for a person with a disability conveys the assumption that the person was unable to do it themselves.

 

Whether it is meant or not, whether it is intentional or not and whether the intricacies are understood or not, behavior communicates beliefs and those beliefs have power.  A lot of power.  Counteracting them takes a significant and constant force of will.  It is a battle people with disabilities engage in each and every day.  It is a war without an end in sight where victory is never possible because the “enemy” has an endless supply of assets.

 

There are a lot of battles I’m currently fighting and they are consuming vast resources.  I have nothing left to wage war against the societal devaluation that comes at me without end.

 

Words and deeds matter.  Take care that you are not unintentionally contributing to the strength of the negativity people with disabilities must beat back each and every day.  And, if you need self-interest as motivation, remember that non-disabled people become disabled each and every day.  The negativity you put out there might turn on you down the road.  Do you want to battle it?

 

What does It Take?

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I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from

I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from

I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from feeling into action?

Believe Maybe

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A couple of weeks ago, I read Frank Deford’s “An American Summer” which tells the story of Christy, a fourteen-year-old boy who moves to Baltimore the summer of 1954. Almost immediately he meets Cathryn, a twenty-three-year-old who contracted polio six years ago and now lives in an iron lung. It is an unlikely connection that leads to an extraordinary relationship.

At one point, Cathryn is trying to convince Christy to do something he doesn’t believe is possible. She asks, “Can you believe maybe?” The distinction she makes between what we believe and what we believe maybe is effort. If I believe maybe there’s a God, then I still have a question to answer and thus work to do. Believing there is a God pretty much settles the matter.

I have been struggling with the concept of hope for quite some time. It first became an issue when I realized hoping I’d get healthy was causing me to live for tomorrow and not enjoy today. Then hope got all tangled up with the lack of dating in my life. People kept telling me that if I didn’t have hope that I’d meet someone, then I never would. I argued hoping for something that was statistically unlikely was the road to insanity. After that, my life began to completely come apart at the seams and I was devoid of hope that it would get better.

Our hearts are designated the home of our emotions. Over the past four years, I’ve learned much about following mine and so far it hasn’t caused me to do something I regret. In fact, my regrets tend to stem from the times when I don’t or where circumstances won’t allow me to listen to what it says.

My heart was devoid of hope. It contained wishes, dreams and desires without expectation to tether them to reality. I think hearts learn, shaped by the negative and positive re-enforcement of life experience. My heart was taught not to hope because nothing good ever came from it and many let downs happened. What has hope done for me lately? Caused oceans of tears.

So, I’m done with the idea of hope for now. We’re on a relationship break.

in its place, I’m entertaining the idea of believing maybe. It seems far more suited to me for it allows acknowledgment of things that feel unlikely while not summarily dismissing the possibility entirely. It allows for effort, but it doesn’t have the black hole effect of trying and trying and trying and then watching all your trying vanish into some unreachable place with nothing to show for it. Instead, the trying is tempered by knowing it might be for naught or it might work.

When I think, “I believe maybe this mess my life has become can be fixed,” I do not hear from my heart, “Bullshit.” I hear an echoing “Maybe?”

Apples and Oranges

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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

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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.