Saturday, July 19, 2014

I am not grateful

It's strangely common to hear statements of gratefulness from people who are gravely ill.  Grateful not in spite of their disease, but because of it.  The concept of disease as gift escapes me.  I don't get it.  It may be heresy, but I am not a member of the disease gratitude club.

Aura 1
I have had chronic migraine disease for 30 plus years.  I have had migraines since childhood.  That's a long time.  While I do have many people and times in life I'm grateful for, I am not grateful for the daily pain in my head.  Not only do I have headaches nearly all the time, I have prodromes that include extreme fatigue, difficulty word finding, letter reversals when I'm writing, poor concentration, central nervous system irritability, and increasing numbers of classic visual auras complete with scintillating lights and holes in my visual field.  Postdromes include (but are not limited to) fatigue, depression, difficulty concentrating.  They leave me feeling fragmented - distracted, disparate and disturbed  There's more, but that will do.  Y'all who have migraines know all about this, but lots of people I'm around don't truly realize the extent of symptoms and the disruption headaches cause before and after the head pain phase.

Headaches have robbed me of days, weeks, months, years of life while I have languished in pain on the couch, in bed, in the bathroom vomiting into the toilet or in the doctor's office.  Chronic daily headache does not (usually) kill you.  It just makes you sick and miserable a lot of the time.  In my case - and that of many others - there seems to be no cure nor even any remission.

Aura 2
I have 2 friends who are gravely ill with cancer.  While I haven't been close to these women over the years, we definitely share a history.  Our kids were kids together, and we're members of a larger shared community in a small town.  I don't know how they feel about themselves, their lives and their disease right now, but I do know that there has been an upwelling of family and community support for them in their struggle.  I'm glad that this is so.  They need it and deserve it.  We all do during critical, difficult times of our lives.  And don't get me wrong, given the choice, I wouldn't trade maladies with them.

But people who suffer from migraine don't get much community support.  Severe headache disease is insidious.  It is treacherous.  While robbing you, the sufferer, of life, liberty and pursuit of happiness, it leaves you looking more or less normal.  It is a silent killer of peace of mind and joie de vivre.  Since it is "just a headache," there is an expectation that you should just pop a pill and soldier on - show up to the party or the job or whatever that entails in the larger sense. We all try to rise to expectations, myself included.  When I (frequently) can't, it leaves me feeling guilty and alone, embarrassed that I have failed yet again to hold up my end.   I know better, but these feelings are a hard habit to break.  And since it is just another headache, and the whole thing goes on forever, there is not much understanding out there.  No one offers to clean my house, buy my groceries or cook dinner.  I kind of understand.  People are busy, and this particular disease just drags on endlessly.  There is no end point.
In the beginning....... and 20' later

Migraine has taken the following toll in my life:
  • Loss of huge blocks of time with my family and friends
  • Inability to attend significant personal, family, work and community events
  • Loss of friends and misunderstandings 
  • Loss of work days and several leaves of absence from three different jobs over the years
  • Ultimately - forced early retirement from a profession I loved
  • Loss of ability to do the things I love to do: travel, write, weave, walk, swim, hang out w/ people
  • Inability to maintain my house, my garden, and provide for and participate with my family
  • Significant loss of income
  • Treatments, medications and hospitalizations that have cost me tens of thousands of dollars
  • Persistant feelings of isolation and loneliness
  • Other losses so significant and personal that I'm not even willing to discuss them publicly.

The above list is not just mine.  It is common among people who suffer from chronic headache.  
Here are some statistics:

About 40 million Americans suffer from migraine, some 14 percent of the U.S. population.  75% are women. 
Between 2 and 5% of the population, world-wide, suffers from chronic migraine
 (15 or more headache days per month).
According to the World Health Organization, migraines are a top leading cause of disability worldwide.
According the the WHO, severe migraine attacks are among the most disabling illnesses comparable to dementia, quadriplegia and active psychosis. 
Twenty to 30 percent of U.S. soldiers returning from combat develop migraine disease.
Migraine is the least publicly funded of all neurological disease relative to its huge economic impact on peoples lives. 

When I read what I've written, I feel like I'm whining, and that's kind of the trouble.  I'm not.  It's just my truth, and it resembles that of many others similarly afflicted.  I'm in a continual process of puzzling out what it means to keep living with such a difficult malady and doing the best I can.  There are essentially no guidelines and no support groups for people like me, so we all have to create our own ways of communicating and sorting things out.