The Song that Never Ends

I feel like shit.

I could probably end there, and just let that be my post for the day.

But I keep putting “write” on the schedule that I don’t follow.  I’d kind of like to cross that off my list.

So, I feel like shit.

And that isn’t a new thing at all.  Which is why the song that never ends seemed appropriate as a title for this post.  I say this all the time, because I feel this all the time.

Last week I was diagnosed with bronchitis.  It is a blow to the body and to the psyche to have bronchitis.  I’m getting to the point where I think that living in a bubble might be preferable to being exposed to the outside world.  And by outside world, I don’t just mean dirty places or contagious people, but literally all of the world outside my apartment.

Environmental allergies.

Dust and mold, for starters.

I’ve been treated every which way—including the much debated and often frowned upon NAET treatments that a person desperate to stop being sick will try–because that person would try almost anything to stop reacting to things and becoming violently ill.

And bronchitis is violent.

My whole body aches from the depth of the cough, which makes the muscles that you never think about or concern yourself with spasm and become pained and fatigued.  There are times that I end up on the floor after a particularly brutal coughing fit.  I double over, hoping that somehow that will reduce the struggle and help me find air.  I’m not sure that it helps.  But I am sure that it seems like the only action one can take to combat the effects of the onslaught.  Double over and gasp for air—it seems the only natural resistance.

I don’t intend to whine about my situation here.  It comes out that way at times.  And some days I do wish for the slightest validation of my suffering, because it deserves to be recognized.  I deserve to be recognized.  But today is not one of those days.

Today is simply the day that I keep saying what I am always saying—that I feel like shit.

If you know me well, you have been around that feeling for a long time now.  If you don’t know me well, you still have easy access to the information.  It is obvious from what I say and do and write that I am suffering more often than I am not.

And I think that it must get really boring and annoying and redundant and frustrating to hear me complain time after time that I feel like shit.  It must be tiring.  It must suck.

It is a really stupid thing to feel, but I feel guilty for being sick.  I feel guilty for burdening others.  I feel guilty for not showing up and not participating.  I feel guilty for going along and placing limits on what we can or cannot do while we are out.  I feel guilty for offering the truth of my situation as a part of our conversation.  I feel guilty for having nothing more fabulous and exciting to discuss.  I feel guilty as I see the eyes of those across the table shift from attentive to numb and indifferent while I explain my newest challenge, or offer details of my situation.

I get it.

It is the song that never ends.

I always talk about sickness and disability and poverty and medical care and socio-economic patterns and the evils of capitalism and the failures of our systems.  And most of that is hard to hear, and even harder to want to engage with any sort of energy.  Because it sucks.

There are not a lot of people I know who feel that they are in a place where they will always remain.  I don’t mean a physical space, necessarily, but a situation that they will never have an opportunity to change.

Most of us—most of you—get to change at will.  Change careers.  Change partners.  Change clothes.  Change perspective.  Change schedules.  Change environments.

And that change might not always be easy, but it is possible.

My never-ending song/story is such because the possibility of change at will has been stripped away.

You want to believe that isn’t the case.  You want to argue that I can still make choices.  And I can still make choices; but I never get to make a choice that isn’t influenced by my disabilities.  Everything revolves around that illness.  Each step that I take considers that, first and foremost.  It dictates all the things, all the time.

I feel like shit.  And that determines everything else about my day, my week, my month, and my life.  A bad day can quickly avalanche its way into a bad year.  It is even determining the words that I type right now.  I keep thinking that I am no longer making sense, and that I have lost the point that I was seeking to make.  I don’t feel well enough to concentrate.  My chest hurts.  I can’t breathe.  My hands are shaking.  I’m queasy and light-headed.  My stomach has that flu-like feeling that can only be described as “yucky”.  My toes are suffering what feels like being stabbed.  My head feels full of cotton and not brain matter.

And I am not going to stop feeling like this.

I will stop feeling it for a while.  It won’t always be this bad.  But it will always be.

I will always be at risk, afraid of the environment and its effects on me, feel guilt about the social implications of my illness, suffer the pain and frustration and challenge of my disability, struggle to find the words to express my life story without making it sound pathetic and desperate and sad, and waiting for the next time I feel like shit.

Yes, this song doesn’t end.  Yes, I will always be talking about my physical and mental health.  Yes, I will always have bad days.  Yes, I will always share my experience with honesty, and show the bad alongside the good.

Today there isn’t a whole lot of good.  Today is mostly bad.

But to be in my life, you need to be okay with a life that is mostly bad.  You need to let this song be sung, and maybe even sing along.  You need to accept my disability and disease as a part of who I am and what I am and where I am.  And you need to know that will never change.  If you can’t handle that, then you don’t belong in my life.

That sounds harsh, I know.  But my life is harsh.  And I need to be honest about that.

I’ve recently said that I will no longer keep the secrets of others, to my detriment.  And part of letting those secrets be freed is accepting that there is a lot of pain and suffering that will also be unleashed.  So, the bad days might increase.

I’ve opened the box, Pandora.  And the chaos that comes out isn’t something that can be controlled.  I can’t plan for the ways that affects my person, my situation, my family, my friends, or my life.  I can only wade through the waters, not stop the flood.

“Will I lose my dignity? Will someone care?  Will I wake tomorrow, from this nightmare?”

A line from a song in the musical RENT seems to echo what I am currently feeling.  But the last question has already been answered for me, and for the characters in the show.  We won’t wake from the nightmare.  The bad stuff—the feeling like shit—is still going to be here tomorrow and the next day, and the next.

But the question of my dignity and the question of the others who may or may not care remain.

Can you love a person who is always “deficient” in some way?  Can you care about someone who has no foreseeable economic gains?  Can you respect someone who doesn’t have a “normal”, professional career?  Can you accept a friend or partner who has obvious limitations?  Can you live in the space where the never-ending song plays on?

I must live in that space.  I don’t have an option.  I can’t leave my limits and challenges behind.  They come on the journey.  They stay packed in my baggage and carried along.  They are a part of my life—a part of me.  So, when the never-ending statement, “I feel like shit”, comes along, how will you address it?  How can you best interact with it?  How can you cope?

You can do as I do.  You can honor and validate and give heed to the struggle.  And by so doing, you offer grace and peace and confidence and trust and understanding that transforms.  The song will still be the same, but it is made more beautiful by the harmonies of a choir.

Joining in the honest acknowledgment of my limitations, and knowing that they are not the whole of me, but a valid and important part changes the score.

It transforms pain into beauty.

It makes beautiful music.

 

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