Tuesday, April 29, 2014

Bipolar time - My Top Five Hallucinations

1) The praying girl.  This was a recent development t

I do not know how hallucinations you may have, but the bipolar group of the (1) and (II) varieties can really be amazing or terrifying.  Or, just so what, there's a Hobbit in my underwear drawer, and yeah, he likes me, OK with that? Huh?

I am a not a doctor, but I do have some experience in the business, having been bipolar for a long time.  And, now that Showtime's thriller program Homeland (and everyone' s favorite BP girl Claire Danes [as Carrie] was last seen running from an execution in Iran) has wrapped up its third season and our latest BP Disorder heroine in Black Box has just begun her show (with hallucinations, but only the patients so far),  I wanted to contribute to the lull (hmmmm...) by sharing some of my favorite hallucinations of the past few years.

5) Radio KNUT - this one is the usual music from a distant radio.  This is a more common hallucination, but mine comes normally when I'm in my house on colder days when the furnace comes on and the hot air swooshes through the grate.  I am then entertained by voices and songs harmless, and in some cases, soothing.  Occasionally, I make requests for some Tony Bennett, or Sinatra, but I'm not heard.  More Glen Miller is all I get.

I look at it all like this, and part of my philosophy comes from some time spent with Buddhist teachers.  From the site bipolar.about.com - Bipolar disorder is an illness that affects thoughts, feelings, perceptions and behavior ... even how a person feels physically. It's probably caused by electrical and chemical elements in the brain not functioning properly (see What Causes Bipolar Disorder? for more information), and is usually (but not always) found in people whose families have a history of one or more mental illnesses.
While we're at it, let's be clear about something: a mental illness is one that affects the mind, not one that's all in the mind.
That's a pretty good layman's term definition of BP.  I will add that from the Buddhist perspective, there is the diseased brain and there is the mind (that part of you that when you are thinking seems to be talking right above your eyes and inside the skill.  Close your eyes and think of your favorite movie or show. Now watch what you picked. See where it is? Yep. Okay, open your eyes). The mind is you, your being, or soul, or whatever works. I'm stuck in here as you are stuck in your body. If the body is diseased, it will effect you and the brain you are using to function in the body.  BP is not your fault, nor is MS (for my fellow MS'ers out there).  I use this to remind myself that a hallucination is just that. Not reality. It does not mean I can't enjoy it, though.
4) Flowers.  Right after I turn off the light at bedtime, and lay back on the pillow, the show begins. With a small nitelight in our parlor giving any brightness to our bedroom, its just enough to see the black flowers begin their dance across the bed covers.  Seemingly held together by the daintiest lace, the flowers move and swirl on silent winds that make no sense to me, but I just watch.  Sometimes. Other times I'll extend my hand out and increase the swirl. The flowers respond, growing and moving to what movements I make.  Last night my wife sat up with me while I "played" with the flowers, and telling her what I could see.  Jackie is used to this from me.  She asked me if I was concerned about this and I said no, its just part of what I am.  But it makes me think sometimes that there is more to all this.
3) Bugs.  Living near a forest has made the outside a bug filled zone through much of the summer and fall.  Actually, it's not that bad when you consider that most of them are flying around in my head.  But I do go through a lot of Raid.
2) People in the house.  When my wife was working and I was home, I'd be writing or whatever and I was reading, I was, at times, thinking there were people in the house aside from yours truly, or, if not people, then the glass angel on our dresser bedroom cabinet is after me.  

1) The praying girl - She appears among the flowers that are dancing around the bed but she is kneeling and slightly above Jackie, and praying.  She is dark outline, of course, but she is in prayer form.  When I told Jackie what I could see, she said "Well, at least she's praying for me!"

Look if you are hearing and seeing things that you don't recognize, you need to speak to a doctor.  They may be able to help.  I know what my hallucinations are.  I do not fear them. 

Thanks for reading

Friday, April 25, 2014

MS plus One - Jackie at Saratoga Hospital

Dealing with MS can be tough enough, but when your partner, your sole support, comes to you in the early morning when you are still trying to remember what day it is, and says "I think I need to go to the emergency room," then you move up to another level of tough, and you don't go back.

She'd been feeling a little off for a few days and then on last Saturday I was still in my fogged, not yet drugged up brain moment, stirring toward less grunting and paying attention to the rather upset person looking down at me.

"I got up a five-thirty and went to the couch," she said. "could not believe the pain here."

She touched the area above her hip on the left.

"I think I need to go to urgent care."

Twenty minutes later we walked into the new facility here in Malta, NY.

We were sent right to the emergency treatment area and Jackie was called in within minutes.  I sat and did that thing that everyone does when they area waiting in a hospital - call someone using a cellphone (if its allowed) (no one to call) - looked at the magazine covers of buff healthy people (two strikes there)- or tried to find the coffee machine, which I did, but the milk (there was none) and sugar (none of those little plastic stirrers) were both in another part of the building.  i was called into the medical cubicle where Jackie was now laying on a stretcher, and being given antibiotics, and a choice of where did she want to go next.

"Home?" she asked.

The nurse just said nope.

"I meant which hospital?" the nurse said. "Albany Medical, Ellis, Saratoga, St. Peter's, Samaritan?"

I immediately dismissed Samaritan as the place where my family is admitted in, but go out only in a hearse.  Saratoga was close enough, so the ambulance came and took her there and I followed, realizing that I had not taken any pills that morning, so I was going solo, but doing an okay job.  And helping the cause was the fact that they did not turn the sirens, and that one of the EM people was a patient in Jackie's office in her previous life, now 4 weeks in the past.

And so to Saratoga Hospital.And now the morphine.  Yep the same stuff to help soldiers in wartime was shoved into Jackie's veins (assuming they could find the veins) and I watched my wife fade into that odd world that I so vividly recall to this minute as I watched my father fall into - in-coherency, and moving her limbs so slowly and awkward manner that they never seem to get where she wanted them to go.  The important thing was that my father was at Samaritan Hospital, if you got the gist of the previous paragraph, and Jackie wasn't.  No, her pain was so bad in her head and in her digestive system that the medical staff put her on morphine to give her some relief.  Jackie was admitted and went up to the third floor.

It seems that every time I go to any hospital, it is in the middle of a construction project, to "serve us better".I know the brain lesions has messed around with my sense of direction and something I had prided myself with, the ability to get from heah to thar, was no longer the case.  Right, left, 2nd left, watch out for newly plastered walls, now a right and here you are.  Whoops, wrong room.  Ever do that? Walk into the wrong room in the hospital, and interrupt a visit between people? And they all stare at you? And all you can do is smile, say sorry, wrong room and skulk out like Snoopy after Schroeder stopped playing the piano in a Charlie Brown Christmas....


And the looks you get from the group is something like the Schroeder and Lucy response.  So then comes the the other awkward time when you don't know when to leave, especially your significant other.  The patient tells you to go, but you see duty still there.

"No. I'm fine," you'll hear, as they make a shooing  motion with their arm, and setting off the alarm to bring the nurse in because said arm is attached to the bags of clear liquid, sending calming agents through the patient's body. "Please, I'm fine. Go."

So you leave and try to remember how to actually get out of the building, find your car, and go home to...silence.  The refrigerator is the only active companion that makes noise, but its a slow hum that falls into the constant background of a tinnitus world.  Turn the light and listen to the nothing, and watch the pills laced hallucinations dance in the dark.  Sleep is long in coming.  Alone here.

She came home Monday, with a lot of instructions. We will adjust. Because we have to. Because I have to. Because she is all I have.

Wow, 8000 hits.  Thanks for reading.

Saturday, April 12, 2014

Why the Easter Bunny terrifies me...

It all started when I was about five or so, Doctor.  My parents brought me to the monolithic store in Menands named Montgomery Ward (which was always called Ward's or if you are a long time Albany-Schenectady-Troy resident you called it Monkey Ward's).  It had everything in the world in it you could want and if you did not find it in the store, there was that magical place you could go behind the Big Store and go to a big room where your parent would give a man a piece of paper and the man would go away and you'd just stand there for a bit and the man would come back with a big box and you'd take the box and go home and there'd be something big and cool in there when you opened up the box.

You knew Christmas was getting close when this arrived....

The Monkey Wards Christmas catalog would show up around mid-October and would be number one on the list for the next ten weeks, especially when there was someplace you might be, um, sitting for a while until someone else wanted or needed to sit there by themselves.  I would take the catalog with me, of course, and continue perusing in my room.  Some things are just private.

My family was not very religious, but we had the basics.  Naturally, Santa came on Christmas Eve, etc.  But there were these barn dollhouses on the dining room table and on top of the television box, with all these little statues of oddly dressed people with their arms in the air like a perpetual Ta-dahhh! and I was informed that I was being given presents by Santa because it was the plaster baby in the plaster straw's birthday. And then one year later or so, my big sister showed me where Santa stored all the toys he was going to give me on Christmas.  This seemed like a good economic move at the time, storing your merchandise close to your customers, but my sister told me that Santa had gone out of business and my parents were the local distributors now, like Tupperware.  So aside from the Bubble Santa ( plastic Santa one foot tall which held a bubble light in his right hand), that ended Mr. Claus for me. It was a birthday party for a baby who was born in a barn, and who, I heard, grew up to be a nice man (picked that up in the whole two days of Presbyterian church school I went to) and then went away but came back and then went away again, and promised to come back.

And this is why I was looking at....

What is this horror? my six year old mind thought.  Why is my father pulling me toward it? Am I to be sacrificed? This monster is waiting for me.  At least all the Santas I'd seen in stores had a somewhat human face under their beards, and the beard would move when he talked.  Nothing moved on the Easter Bunny's face, and when he talked it sounded like the Bunny-being was trapped inside his own body.  And what is going on with his feet? This is so wrong.  I wanted nothing to do with this, but my father took my hand, something he never did, and we never held each other's hand again until a few days before he died.

After a few seconds of a hello from the BunnyMonster and the voice that seemed to come from his left shoulder, I was out of there and Dad had to chase me to the Down Escalator. That ended Easter for me. No more coloring eggs, or finding them before my dog did.  The basket of candy still showed up so we went on pretending, if for nothing else than the coconut egg.  We'd go out to dinner or bake a ham at home.  Didn't make much difference.  I'd rather have Halloween.  You know its for the candy and the goofy costumes, and the scary stuff is a bonus. But this?

No, no, no! I'm lucky my Prozac script just got re-upped.  I can still see him in my nightmares. Almond Joy, little boy? Gaaaaaaaahhhhh!

Thanks for reading

Thursday, April 10, 2014

Hey, I'm cured! Oh, wait....d'oh!

No, the lesions are still there, and that's the beauty of it.  The lesions are right where they were two years ago, no more, no less. That is called stability by the doctors and a reprieve by me.  It does not mean I am out of the woods, but I made my own trail and I'll keep doing it until I run out of trees. Brain re-wiring is highly recommended. And keep swimming...

Today was my last aquatic therapy class for a few weeks, but we'll start again in May.  Now there's decent weather to begin my six month long yard cleanup so it will look decent again by mid or late October, or the first snow whichever comes first.  And there's this novel writing thing. And my wife is around the house now as she left her job. I should be able to function OK.

Look, I would like to apologize to the many many of my MS Brothers and MS Sisters out there on the planet who are having it tougher than  I could ever imagine.  I can go to Facebook and in the MS groups read of people having terrible times with a bastard of a disease that will not kill you, but is glad to wear you down to a nub and then step aside to let one of the classic killers finish you off.  I am in a group that meets once a month, and I hear of the struggles of people trying to balance family life, jobs, and a disease that no one can see unless you have a spasm of some kind.  There are lesions on their spines and in their brains. Many are battling for disability benefits, and I really did cruise through it. They have true pain and they are not believed. There are family members who think they are helping by ignoring you or how you feel.  My family keeps its distance, and that's fine if it works for them.  I was used to being by myself and there are enough scars in the family to go around.  But today is my brother Bob's birthday, #69, and best wishes to him. It's National Siblings Day, anyhow.  Why is the Siblings' Day on a Thursday?  You only have two parents, biologically speaking.  You can have a lot more brothers and sisters.  Hallmark is missing out on a real deal here.  For only me kids, you can compensate by having grandparents and parents spoil you rotten and get all kinds of stuff.  The rest of us wore hand me downs (and I had a big sister).

There's your family, and there's Your Family.  The first is the result of genetics.  The second is a choice.  It can start at the age of three or so and go until your last breath.  The people who choose to accompany you on your journey, and you treasure them.  My fellow MSers are my family, as are the Social Services workers, and folks battling mental illness. Even you are.  You are important to someone, even if its just the person you see in the mirror.  Its taken a long time and a lot of pain to get to where I am (well, not the couch where I am right now, but you get the idea). And, as I've written before, there are angels in your life, if you can find them, even if they bark, say meow, or squeak - but if any these three examples are human shaped, make a note to get out more.

I bring this up to talk about "my affair".  Once a year I get together with one of my dearest friends from college for lunch or dinner.  We talk about sports, literature, life, etc. for hours and laugh about days long ago. Me boy. She girl.  We were never "like that" in college, but we remained close and danced at each other's weddings.  We meet on Good Friday each year (its Good Friday because when we first started this in the early '90s, Albany County gave their employees Good Friday afternoon off - a holdover from the Irish Catholic political machine days - that has since changed). Over the past twenty years, you must condense 12 months of living into a couple of hours, when you're not eating or drinking and running to the bathroom. What is important? What really matters in the story of your life, when you get this chance to tell  it?

I think about this in my writing a lot. What's the most important moment of the last year for you?

Just keep swimming.  Thanks for reading.