Thursday, May 31, 2012
And at Albany Med
We spoke with our Neuro
And heard what she said.
"Your MS seems better."
"You've been working out."
But we still must examine
And see what's about.
A cure is a dream,
So we take what we get
From the whole MS team.
As patients from round the world,
show their pain and ask why,
So off to the stretcher,
I then had to fly,
"Remove shoes and socks
and this pin I will try."
She spoke just four words
"Can you feel this?"
On my legs, feet, and knees.
Nowhere did she miss.
Now follow her finger
and please touch your nose
And walk toe to heel
Just in your pale hose.
Now walk real fast
You are good to go
See you in six months
Leave a co-pay, you know.
We dashed to our car
The parking was free.
And a trip then to Starbucks
For my wife and me.
So we talked of the words
that we heard on that day
That MS ain't winning
We keep it at bay.
And we heard dear Neuro
as she dashed out of sight.
Just do what you do
Take your Copaxone tonight!
Monday, May 28, 2012
When you're dealing with mental illness, yours, not anyone else's in the family, you have to begin to by showing compassion.. for yourself. Compassion can be defined as: a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering (Dictionary.com). Look at the person in the mirror, yeah, I'm talking to you. Go look now. Then come back. That person you just looked at is dealing with an incredible challenge that other people do not understand, and the media either ignores or places this challenge into a slot that they can easily referred ("the person displayed bipolar tendencies" said the guy on the six o'clock news, nudge wink you know what I mean).
So you will go through your life and you will love some people, be rejected by some you hoped would love you, and reject others who would like to love you. No matter how you look at it, its you loving people, people loving you. You putting up with their crap, them putting up with yours.
Okay, now add in a mental illness component, for you or other person. Maybe you don't notice their's, and maybe they don't notice yours, at first, but it will get noticed. Not right now, but that first time you obsess on something, or neglect something, or just have a day where you sit on the couch and watch the Price is Right and do not move even when the soaps come on, and you have no idea who Victor Newman is, someone will notice, unless they have their own issues.
Tolstoy was right, sort of:
"All happy families are alike; each unhappy family is unhappy in its own way.”
― Leo Tolstoy, Anna Karenina
If Mr. Tolstoy doesn't mind, I'll amend it by saying that each dysfunctional family should have their own reality show, even though they don't live in reality. A roomful of manic depressives could yell, scream, cry, curl up in a corner, know that everyone in the room is out to get him or her (because they are) and do this all in the length of an hour show, with the promise that next week's show may move everything around. Who needs reruns?
Put my mother and I in the same room for more than 20 minutes and you'd see anger, frustration, slamming of various objects, possible tears, and that's before I even said anything other than "Hi."
But the title of this blog is "Someone to Love" and it seems more like I'm encouraging running to the nearest exit, but in essence that is love. The courage to not run. Sometimes its best to let go, but even then you do not run. You stand with open arms and let the person go, but be sure your arms are ready to hug again, if the other person is ready. They have to be ready as well.
Somewhere else I noted my psychologist said that codependent bipolar individuals perpetually destroy each other. There's always some crumbs that gather together even after a real bashing, and those crumbs reassemble as some form of human being that will try and function in the world, until the next thing.
You've found some centering, let's say, talking to medical professionals, and taking a pill or two to help you through the day. There's someone waiting at home for you. That person knows your faults, and has their own. There is acceptance. And that is love. You are a human being, and you have something to offer the world and me. I'm here for you. Hug?
Okay, next scenario. You've found some centering, let's say, talking to medical professionals, and taking a pill or two to help you through the day. Maybe some meditation. And there's no one at home to greet you. Maybe a goldfish. Back to the top of the blog where you need to welcome yourself home. You are a human being and you have something to offer the world. The rest is up to you.
Last scenario. You've found no centering, let's say, you're not talking to medical professionals, and taking either no or the wrong supports for your condition. You're screwed. But one person believes in you, and you therefore have no excuse not to return that love by improving yourself. There are things that can be done.
If no one believes in you, then its harder than all hell, but that's when you need to find that golden Nature within you. I'm not going to get all Buddhist on you, and these are just words on blog paper, I can't reach you. But the Love you need is always there, and if you want to find it, you can. The love may be hidden by years of crap upon crap, fermented by lousy treatment by others, and a dash of a binge of your-favorite-pastime-here, but you can find it.
Look, it took a suicide attempt and a lot of tears for me to realize how screwed up I was and all the time my hand was held by one extraordinary woman - my wife (who never realized the ride she'd be in for, and she stays, dear God, she stays). And now I can smile, even at the seriously messed up brain I wake up with each day, because there is love within. It's there. It's the main key to health, mental and physical. You are here for others, for the billions, for the one before you, for the one within you.
Friday, May 25, 2012
But in these fantasies I come like gangbusters (really, well, in a mental illness sense) and mow people down with my super duper gun that does that sort of thing. The mowed down people are normally generics, with more specifics as I get to the floors/areas I knew well. Then its the actual group. Or was. I've had these heavy thoughts for a long time and since being away from the job for almost a year and a half now, with minimal contact, I really am not sure who works there anymore. But it really doesn't matter. I'm just getting out internal aggression in the best way it can be done. It hurts no one but me.
Agression has its place. As it is part of the fight or flight response, aggression turns on certain components of your neurological house, and deadens others. It's just the body's response to stress, no different than a lion and zebra seeing each other on an African plain. One is ready to run and one is preparing to get dinner, but both are preparing different parts of their neuro systems to respond properly.
While I have actually set foot back in my old job's building only once since I retired, I can run back there in my mind any time, and still do in my dreams. I wrote someone recently that I still have those "Mickey Mantle" dreams, where the great ballplayer in his life would dream that he was outside Yankee Stadium and could hear his name being announced as "now batting for the Yankees, number 7, Mickey Mantle, number 7". And the Mick tried like anything to get in the building but he never could make it in, and he'd wake up in a cold sweat. For me, I'm back working for the county as a volunteer consultant or helping out with some paperwork, but its time for me to leave, and I can't find my way out of the building. Or I can't find my way to a meeting. Like those "late for class" ones.
I'm sure many of you have some version of this in your own night time wanderings.
I do wonder what I'm still so pissed off about in these stress play outs in my head. I didn't get some promotions I thought I deserved. Work was deteriorating in quality. The entire program needs to be overhauled for a new reality. And people are damned rude on both sides of the desk. That's a start. And there's not a damn thing I can do about it anyway. I'm not there, and by my own choice, and that of my legs not working all that well, etc. I probably could not have handled the promotions, or if I did get them, do my best. Of course, the biggest thing is I'll never know. For this I go all Rambo every night? What a waste of time (a very precious commodity). Is Rambo too old a reference?
So for tonight I think I'm done with blowing up the building. And I hope the authorities will note that said real building remains standing and all employees are accounted for, unless they called in to take the day off, which is not my fault.
And so to bed to try again. Good night, and pleasant dreams.
Tuesday, May 15, 2012
Someplace to Go
The last time I spoke with my neurologist (for MS - by the way, an aside here, there are great neurologists out there who really appreciate the challenges of the disease, and there are just as many, if not more, who have no clue. Be an advocate for yourself.), she told me in no uncertain terms:
Monday, May 14, 2012
And they are....
1. Have something to do
2. Have somewhere to go
3. Have someone to love
4. Have Something to Believe In
5. Have something to look forward to.
Over the next five days, we'll take a look at them, and see where each of them was of a help to me, and if what worked for me might work for others.
Have Something To Do
Okay, not like this guy, whether you are blondie there or on the other end of the phone. Something to do does not mean your job. In fact, stressful jobs can only make things worse for yourself, your condition(s), and the people around you. Here is a link to a recent study for bipolar, and right here is one for MS. There are plenty of studies on this and you can weave your way through the InterWeb and see.
So, quit your job? Well, that's a tough call if you've got others dependent on you, or you need the health insurance. Or here's a different thought, maybe, despite its hassles, you actually like your job.
Early on in my life I decided I just could not work to make someone else wealthy. This meant I either when into business for myself (non-starter), or worked at a non-profit, or government, or just stay home. After my father's death in 1979, I did just that. I stayed home, and sat, got fat, and tried to deal with what I had just been through-not realizing that I was bipolaring on this stress and that the disorder loves this. I took two years for me to finally get a job. But got it I did. Civil Service. Government Guy. Around here, not far from the Capital in Albany, everyone assumes you work for New York State. But after a few futile attempts in taking tests, I found myself sitting nice working in county government.
It was a Social Services Office. Or, if you prefer, the welfare place. People came in with their disasters and we did the best we could to fix things up. I'm going to keep my opinions on Welfare/Public Assistance/Temporary Assistance to myself as I trying to keep things rant free, but you will probably get the idea when I note that I was in the business for 29 years, but got out the moment they asked if I wanted to.
I worked with some wonderful people, some complete jerks, a few psychopaths, and people that would have been institutionalized just a few decades ago, myself included. You find these people in every walk of life. And it all depends on your reaction to them. Work with the nice as much as you can, avoid the rest if you can, but if you can't (and here's where things go a little Buddhist), then do your best to be as tolerant as you can. They have issues, too.
So years in the office first as a cube drone and then as a supervisor up to an Assistant Director. When no matter what level you're at, you are still dealing with people in crisis, and add in the daily details of staff, and your personal life, and you're heading nonstop to Stress Central. Some turned to drink, some turned to drugs, others opted out as soon as possible, which causes more stress as now you've got to hire more staff and train them or dump on the remaining staff. And the phones never stopped ringing.
I left the County at the end of 2010, thanks to an early retirement incentive. Considering that MS was starting to wind its way into my legs, making walking tougher, and stairs? stairs?(please). Worse for me was there would be times my staff would ask me questions on the arcane rules of welfare, something that I lived and breathed, and I would have no idea what they were talking about. Warning: Get out!
My full time job is not letting MS win, in not letting bipolar disorder control thoughts. These can be full time challenges, and right now I'm still pretty mobile. I can still walk.
If you are still employed, congrats, and all the best. It is something to do. But remember what your real job is...you. Take care. More tomorrow.
Saturday, May 12, 2012
I've spoken before about her being bipolar. She could be a difficult woman to deal with, but on the other hand, many just knew her as crazy Marge, being the belle of the ball, getting people laughing, even during her final days in the nursing home when the cancer had done its best Pac-Man impression and gobbled up her brain and insides, leaving the black sludge behind. And when the sludge had enough, it took her.
She sat up in bed for the longest time, her legs close to her chest, her arms around those limbs. She said very little, just breathing. The nurses who adored her came in to take her hand, and whisper to her. My brother and I stood and sat and waited. She breathed once more and let go.
When I'd gotten to the nursing home that Saturday, its was about 85 degrees and I was in t-shirts and shorts. By the time we left, it was about 45 degrees, and I was shivering from all kinds of reasons. We drove home in one of my brother's classic cars, one of the ones so classic, it didn't have a heater.
The next few days were blurs of things being done, and then being over, and then more to do. And then done. Totally done.
My psychologist told me that one of the deadlier combinations in mental health is two bipolar persons being dependent on each other, and when one is ripped away, damage ensues. Marge was dependent on me for support in many ways, and I always had the need to rush in and save everyone from the world or themselves. My mother has been gone for 11 years and I find it difficult to go to my brother's house, with whom Marge lived "temporarily" for 17 years, always expecting to hear her footsteps coming down the stairs from her rooms. It took me ten years to finally place a marker on her grave:
But I did. She'd encouraged me to write, act, do comedy, have fun, but eventually settle down with a nice girl and have a good life. Done and done, Mom. We're good here.
Shout-outs to the Moms - Deb, Tracie, Tara, Brittany, Joyce, Rose, Sonya and Kristen and Aunt Kay.
And to the Moms we miss -Barb, Janet, Ag, and Marge (and the others in your thoughts).
Thursday, May 10, 2012
Rule One of Men's Group - don't talk about Men's Group.
Rule Two - It's more important what a person says than how long it takes him to say it.
Rule Three - There is no cure, so we are what we are, where we are, doing the best we can, until we can't.
Rule Four - We all agree that having MS does not make you a babe magnet.
Rule Five - Python's Ministry of Silly Walks has got nothing on us.
I never really had a group of "guys", you know, like you see on television? They all gather at a local pub, diner, and have witty repartee that someone else writes and gives them. Plus they solve the problem of the week in less than 25 minutes. I was thinking what it might be like if a group of guys with MS might be like in such as situation....
Sit com guys (Age 20-30, amazingly employed and living in large apartments in NYC [or version thereof], always finding a parking space, and drinking generic beer, or actually just having the beer in front of them)
MS guys (Age 50 or so, maybe married or not, lucky if they can still work, find a handicapped parking space that is anywhere near where you want to be, and careful of drinking anything that will result in yet another pill interaction or more frequent urination.)
Enter lovely redhead, slim and attractive, going to the bar on her own. Both groups stop. Each selects their representative. They approach.
Sit com guy: "Hey, I know you just got here, but I thought you would find it a lost night without a ride in my Beemer. You'll never be lost again."
MS guy: "My car just got a brand new lift in it. Yeah. Soft and comfy. Room for five, as long as everyone sits in the back and you don't mind if you drive. Free ride on the ramp, if you'd like. Up and down, up and down."
Tuesday, May 8, 2012
Both of my parents have been gone for over a decade, my father for more than thirty years. And yet they never leave me because I have their diseases. My mother was bipolar. My father had primary progressive MS. We did not know that then. We (or I) just knew there was something wrong with them, but, at least in my mother's case, she was always like that. My father, on the other hand....
So time for some ancient history. Toss your mind back to the Ford Administration, the 1975 World Series, and just a different planet. My father worked in the foundry at General Electric in Schenectady, New York. On October 9, 1975, my 19th birthday, there was an explosion at GE and my father, age 55, was caught in it. He spent time in the hospital, did some therapy, and went back to work and then was out of work and retired out the following year. In the midst of all this were the shadows of suits who had my father sign papers that made it easy for them to dump him on the side of the road.
The day my father retired was also the day my dog died. Childhood was definitely over. I was sent into a three year career as an uninformed, uneducated and embittered caretaker of this poor man who faded before our eyes. I lived in terror of his midnight rambles around the house, his shuffle step, his inability to understand what was going on around him. He asked me once what was wrong with him, and I told him that I thought he had some kind of dementia.
Dad, I know now. I'd say, "Lou, you've got Primary Progressive Multiple Sclerosis."
"What the hell is that?" he'd ask.
"It's a disorder of the central nervous system. Your brain has been invaded."
"Invaded? by who? The Japanese again?"
"I don't know. It's just there. They are there. They're going to make things miserable for you."
"Completely up to you. The disease will mess with your walking, making a leg sort of trail behind you, and your thinking will get a a little shaky, and you'll have bowel, bladder, and pain problems. These can all be treated. But there's no cure, and nothing else that can be done by the professionals except research. Meantime, you've got to keep moving, exercising, and using that brain. Don't give it an inch."
He'd turn away and watch Little House on the Prairie. The conversation ends and I walk away.
"Can you catch this?," he'd call. "Or someone?"
"I don't know." Fade out.
There seems to be a genetic disposition for this form of MS, which hits after the age of 40. I've done some genealogy studies of the Martin family, and there's not a great track record for long lived Martin guys. In fact my brother, presently 67, is the longest lived Martin so far. I hope to continue the trend. Hope to.
So at the time of my father's developing MS, there was little to nothing known about the disease, and so my father's maladies were or were not handled depending on what was going on. My mother was working and I was going to Siena College, and we handled things the best we could, both having no idea what we were dealing with.
I graduated college in 1978, and instead of getting a job, ended up being my father's caregiver, from making sure he ate to cleaning up his messes when he missed the bathroom. Lou entered the hospital in August 1979 and died two months later. There's a lot more to this, but for right now, the thought was slammed into my head that I might be next. I watched my brother age. He made it through.
Uh-oh. October 9 2011. I turned 55. I did not need an explosion to know there was something wrong with my legs. I was diagnosed PPMS.
My mother's family had a history of depression and bipolar disorder, and that has been passed along to yours truly, and I believe perhaps the next generation. I decided early on that I was not interested in having children, more than anything to stop the spread of the disease my father, and possibly his father, had. The shadow of bipolar is also too haunting for me. Now both demons live in this body, and I must deal with them. No cures, and both trigger depression.
No. Nobody else. The line is drawn here.
But this ends here with me.
And yet it doesn't. This weekend my wife and I completed the MS Walk in Colonie. We did one mile. We did not have a group so did not get have an official picture taken. Jackie and I were group enough, for there unseen were my parents who passed on this last challenge to us, and also those unseen angels that keep me moving, thinking, and loving life. Yeah, we had quite a crowd. Quite a crowd.
Thursday, May 3, 2012
In the manic phase of bipolar disorder, feelings of heightened energy, creativity, and euphoria are common. People experiencing a manic episode often talk a mile a minute, sleep very little, and are hyperactive. They may also feel like they’re all-powerful, invincible, or destined for greatness.
So I'll try to make this interesting, and as funny as possible. And here we go....
Tuesday, May 1, 2012
OK, second entry. It's 3:30 in the morning and I've not slept. A medication problem, in that I ran out of Klonopin (Clonazepam) and while I've gotten a new script from my Psychiatrist, did not get it filled today, so yesterday, (Monday) I was in more cloudy than usual, and tonight I've returned to the muscle tightened and slight anxiety of pre-Klonopin days, which means I'm just awake. So, I might as well get something done. My psychiatrist noted that the "cloudiness" in my brain is part of Klonopin withdrawal, and the tightness in my back means its mostly gone (the Klonopin, not my brain [yet]).
It's odd having a bi-polar day when MS has become such a dominant part of life. But I'm not jumping up and down, doing manic things like leaping tables, throwing baseballs through walls, or being depressed in a chair. I have learned to get on with things. I'll get my script filled in a few hours, since the pharmacy isn't open now, and do some errands, and I've got physical therapy today. And I'll probably take a nap.
Yeah, a nap would be good.
More on the way.