On A Dime (Excerpt)

The following is an excerpt from On A Dime which can be found under Pages to the right of the posts.  The original is a longer piece and this is out of order.  It’s not that I don’t want to write new things; it’s that sometimes I get into the same mindset as when I originally wrote it.  .

As this NF of mine continues to worsen, I have learned a few things along the way

I’m aware that everyone, not just sick people, must deal with the “gnats” in life, the things that breakdown.   Whether it’s the red tape of bureaucracies, a fender-bender or an inaccurate charge on a credit card, it’s all part of life. Yes, everyone must deal with those things, whether or not we sick and/or in pain. 

When you are ill, you must be more vigilant about not letting the gnats destroy you, especially if you are fighting alone.   If you have no one to help you make the calls, write the letters and correct the mistakes, you best steel yourself against a bureaucracy that wants you to give up.  And make no mistake that is exactly what they want you to do.  When you are least able to advocate for yourself, when you are at your worst physically, mentally and emotionally, that’s when you are asked to perform ridiculous feats to prove yourself worthy of disability or other help.

The non-stop barrage of problems not related to my medical condition makes it nearly impossible to concentrate on finding ways to feel better (getting well isn't an option  until they find a cure).  Instead, I spend my time putting out fires and searching for everything from adequate insurance to government programs that might help, not to mention finding ways to save money.  

Recognizing the difference between being angry and being heard has been especially challenging.  While finding your power and using it appropriately is important, so is learning how to center yourself.  As we discovered from nine-eleven, as well as natural disasters, we have little or no control over anything.   Every day in this country, thousands of people are suddenly faced with the decisions I had to make.  I know it isn’t as sensational as nine-eleven, but it is as every bit as devastating.  And with no telethons, no emotional support, no point person to say, “Here’s what you do,” it’s re-inventing the wheel with each new person it touches

The world expects you to move on, even if you are unprepared to do so. It’s too uncomfortable to be around someone who is ill and in need. Giving to charity is easy because writing a check is impersonal. Giving of yourself is more difficult because it demands that you look, listen and actually hear someone’s story. 

And no matter how much they love you, even family and friends grow weary of illness.  It’s a demanding, tiresome experience and leaves people feeling helpless, especially when there’s no cure.  I believe that somewhere along the line, we started confusing “co-dependency” with helping someone in need.  Certainly, a sick person should do the most they can for as long as they can.  But no one knows the upper limit better than the sick person.  “When you have your health, you have everything,” becomes much more then a familiar speech at Thanksgiving if you are ill, especially when it is chronic or incurable.

The twisted truth in all this is that when I am in a rage about my situation, the doctors, the pills, or the system that has let me down, that is when I have flashes of my own power.  These flashes usually include a spurt of euphoria, the feeling that everything is going to be all right.  The notion that right now, right this moment, I could die or I could live, but either way, it’s going to be okay.  But these moments are in no way the norm.  The norm is hoping that the effects of the painkillers last from one dose to the next.  It’s hoping that they work the way they are designed to, and that I will remember to take the next dose.  The joke however, is that if I’m feeling okay, I sometimes forget to take the next dose or convince myself I don’t need it.  Then the pain is twice as bad when it comes.  And it will come.

Unfortunately, because we’re such a results driven society, many people’s first reaction when they hear that someone is ill is to “figure out” a way to “fix” it.  Sometimes, all the sick person wants is an ear, not answers.  But few people know how to let a sick person just be.  Strong or not.  Happy or not.  In pain or not.   That is the way, of course, we should all live our lives. 

But when you lose your health and your wealth, there is no other choice.  And you better believe life turns on a dime.  Not even.