Black and White

Recently, as I have come to recognize my calling in life and am deciding the best way to follow that, I have realized that there were parts of my life that I had left behind and needed to bring with me...if for no other reason than to remind myself that I survived.  Unfortunately, as I accessed documents and people in my past, I realized that my life had been whittled down to legal jargon and medical diagnoses in black and white.

As I delved into my past I came face to face with the court documents that detail my traumatic childhood.  Yet, in all the legal jargon, the emotion and pain is lost.  It reads like a million other documents.  I was struck by how clinical it felt to read the indictments and sentencing records as well as court documents.  There was no mention about a ruined childhood or a tragic one - just facts and legalese.

My medical chart is the same.  It lists my diagnoses and medications and there are references to the tragedies that caused these injuries but it doesn't talk about me as a person.  On a given day my chart will list my pain as a 9 out of 10 but omits that I am crying, miserable, missing out on events and gatherings.  It fails to explain the defeated human spirit I am carrying on that day.  The chart is my life simplified to clinical diagnosis to be passed along to the next provider.

How many parts of our life do we whittle down to mere words and ignore the intense emotion?

I realize that our medical and legal systems would crumble if they had to record the injustices in emotional language.  No one would be able to handle it.  The legal or medical jargon enables us to focus on the issue and stay an arms length from the human suffering.  However, I think it is important to remember that behind each of those medical charts or legal files is a living person.  Someone who is hurting dramatically in ways we cannot imagine. If we think a bit more about the humanity and less about the clinical diagnoses or legal jargon would we be moved  to help those in need?  It is much more difficult to continue along in our ruts when we remember that behind each medical chart or legal file is a living person dealing with unimaginable pain, frustration, and loss.  Life isn't lived in black and white and the tragedies we survive should be available to people in color.  Perhaps if in reading our history we were forced to see it in color, it wouldn't be quite so easy to repeat it.

Need a few days off...

I have wonderful news to report:
Robert is the runner up in the Regional division of the Scripps Spelling Bee!
Mary received a 100% on her math test (which is so difficult and rare that students who accomplish this receive a phone call from their teacher).

So while things are going well for my kids and Tim is busy as ever (just finished a musical and another one started rehearsals this past weekend) I am also super busy and will be taking a couple of days off.  I am working on completing my Reiki I certification as well as writing 3 blog entries that are taking some time as I want to convey exactly what I mean and what I feel which isn't always the easiest to do.  I am also tackling the fundraising and travel plans for the CCS Jazz Band trip to New Orleans in April 2012 and the paperwork is time consuming right now but will ease off a bit in a day or two.

Thank you for reading.  Your reactions to this blog have inspired me to reach out to others, share my journey, and hopefully remind people that in the midst of terrible pain there is also joy and laughter.

Hoping everyone has the spoons they need for today.

~Zip

Adventures in Driving

So after the emotional posts of the last few days, I decided that a light post was what we all needed.  Tim and I have had many adventures and this is one of our most treasured.

We had been married 1.5 years and were living in Bowling Green, Ohio while Tim was finishing a double masters and I was finishing my undergraduate degree that I had changed from music to American Culture Studies.  We were planning a trip to Cooperstown to see his family with our lovable lab/spaniel mix Nelly.  She loved riding in cars so the 9 hour trip wasn't daunting because of her.  However, with both of us working, going to school and Tim teaching on top of it - we were rather tired.

At that time, we had two cars.  Well, actually we had a stick shift Chevy Cavalier and a mini-van (how unhip before children) to cart Tim's gear around to all his gigs.  I had been driving the cavalier almost exclusively but we took the van without the back seats in it so that Nelly had lots of room and so Tim could lay down in the back and sleep as he was exhausted while I took the first shift of driving.

Being the good scout, he had a great sleeping bag that he laid down in the back, snuggled in, and was off to sleep before we left the driveway.  Nelly was soon curled in the front seat sleeping as well.  Things were going fine - I managed to get us through Cleveland without running any idiot drivers off the road (I used to have a bit of road rage) and about 45 minutes past Cleveland I realized how exhausted I was. I knew that I needed to wake Tim up so he could drive for awhile.  Nelly is a great co-captain but she doesn't hold a conversation very well as she, too, prefers to sleep in the car.

So I put my signal on and get off at the exit taking my foot off the gas. By the time I get to the top of the ramp I don't even have to touch my brakes as I go through the green light turning left towards the McDonald's.  I begin to accelerate and this is where things get tricky.  See, I was used to driving the standard Chevy so as I neared the McDonald's and went to "down shift" as I slowed down, I used the "clutch" which was actually the brake.

Now understand, Tim is completely asleep in a nylon sleeping bag in the back of the mini van and Nelly is in the front seat.  I went from 40 to 0 in about 15 feet.  During which Nelly goes flying off of the front seat and I hear Tim's muffled yells as his whole body comes crashing to the front of the van feet first managing to get stuck under my seat.  I cannot figure out for the life of me what has happened as I am assuming some sort of horrible mechanical failure of the van and I begin yelling for Tim as we are in traffic and I am terrified of being hit.

It only takes about a minute for me to realize that I am a dumbass and am actually driving an automatic.  The "clutch" that I just laid on the floor is actually the brake.  Laughter, uncontrollable laughter, commences and I can't get it together to drive.  Tim is jarred awake trying to figure out why he was launched (literally) into the front of the car and Nelly is looking at me with words that are unkind.  I am trying to explain to Tim what happened but it is no use so I manage to drive the 100 feet into the McDonald's where I safely and carefully park the car.

Tim is NOT amused at this point.  His ankle hurts, head hurts, body has been smashed and he is concerned about my sanity.  (This was not the first time nor will it be the last.)
So, as I let Nelly out to stretch and see if she has any injuries, I explain to Tim - through tears of laughter - that I thought I was driving the Cavalier.  After about 5 minutes he sees the hilarity of the situation and is laughing uncontrollably with me.  Needless to say, neither one of us had trouble staying awake the rest of the way to Cooperstown.

Today, I will be driving and Tim will randomly remind me that I am currently driving an automatic...without a clutch.

Tim's Guest Blog: Thoughts from the Partner

It is often very challenging indeed to be married to someone in chronic pain – watching someone you love dealing with the disappointment of missing out on the important (and seemingly unimportant) events of their life, watching them battle the inevitable depression that accompanies persistent pain, trying to move them away from feeling guilty about how their health negatively impacts your life and your children’s lives, helping them cope with hospitals, doctors, insurance companies, and pharmacists…. Oh, and did I mention the fact that your spouse is constantly in pain!

Shortly after we moved back to Cooperstown (a year-and-a-half after Tamara’s first brain surgery) Tamara read an article that talked about the high percentage of chronic pain folks [you all really need a nickname: Painiacs?] whose marriages collapse. She suffered a major bout of depression after reading this, and we argued a whole heckuva lot about the article. I was just beginning to understand all too well the reality of how difficult living with a chronic pain sufferer might be. But what I’ve discovered – and this is, of course, just me – is that your perspective and approach are what make or break you when it comes to dealing with chronic pain and its impact on your life and your marriage.

…Frustrated that you finally get a night alone with your spouse to go out to dinner, and she can’t leave the bed? Have dinner in bed and watch “Tommy Boy” for the 1000th time. Be sure to laugh at the fat guy in a little coat, and when the rhino comes too close to the car.
…Tired of having to cancel plans at the last minute because of a bad pain day? Teach yourself to relish the the adventure of “I feel okay today… let’s run to Utica and catch a movie and get some shopping done.”
…Angry about the treatment you received at the hands of some doctor? Make up wild stories about his or her incompetence, and laugh at the fact that while you only had to deal with them for a few hours, he or she has to be an asshole all their life!
….Pissed off that she can’t come see “The Lion King” on stage? Give her ticket and the opportunity to the neighborhood kid who might not get to go.
…Saddened by the fact that your loved one is hurting?...Okay, this is really where the Polyanna attitude breaks down.

Personally, I have learned to deal with almost every aspect of my wife’s chronic pain: The anger, the sadness, the guilt, the scheduling and finance headaches: Working together, we (usually) approach these things with humor, with love, and – perhaps most surprising of all – even with some optimism that our situation will improve. I can handle that Tam gets frustrated at me when I handle the medical staff differently than she would. I can take it when I see her over-exerting on her good days to do things like clean the house when I would rather she spend her spoons on herself. I can hold her when the depression hits, or – conversely – stay away from her when she needs a bit of space.

But I can’t stand to see her in pain. I doubt I ever will be able to stand it. I can try to comfort her, I can get her food and medicine, blankets, socks, or t-shirts, heating pad or ice packs, but no amount of positive thinking can get me past the fact that my…wife…hurts…..........bad.

Plain and simple: the way to live with debilitating pain in your family is to respect that it is there, but to not let it run your life entirely. Work around it the best you can – make accommodations for it, but never let it be the determiner of how you live and everything you do. Don’t let the pain replace the spouse that it’s victimizing. 

And if you do find a way to handle seeing them hurt, please let me know.

Chronic pain spouses

I am sure that it must be difficult to be married to someone in chronic pain.  I wouldn't know as I am the one in chronic pain.  However, Tim assures me that it is.  He doesn't do so in a mean way but we talk about the facts as we see them.  Our marriage always has been a 50/50 marriage since day one.  In the beginning, on any one day, I might do 90% of the work with the kids and house but the next day, he might be doing 90% as I had other commitments.  We don't have (didn't have) jobs/chores that were based on gender.  He can cook, clean, parent just as well as I can and we always embraced everything as a team.  Someone remarked that I called him my partner and not husband.  For me, husband has certain connotations (submission, head of house) and Tim is truly my partner.  He is 50% of me - he is my better half.

Being sick has changed that.  Now, Tim is not not only my better half but often the only half of me I can get to work/function.   I don't take out the trash.  We live in a split level and me carrying heavy things up and down stairs is off limits.  Tim carries the laundry up and down the stairs.  I wash, dry, and fold it but have to rely on him to do the lifting (though I admit to cheating a little on this one...).  I don't wash the dog anymore.  Our 50 pound hound/shepherd mix needs to be physically kept in the tub and I cannot do it.  Heavy pans require Tim to lift them.  Boxes that I used to stack on the top shelf of the closet now sit next to the closet until Tim has time to lift them.  When the kids were younger, if they fell asleep in our bed or on the sofa, I could carry them to bed.  Once I was diagnosed in October 2003, that stopped.  Mary wasn't even 4 yet and Robert had just turned 6 in August.  Thus, the lines of chores became more divided based on the physical requirements.  Tim is doing more than 50%.

I used to love to garden, mow the lawn, prune trees.  I still do some of that but I cannot really do what I used to.  I can't mow the lawn.  I can only prune the little tree branches.  It is now another job of Tim's.  Our marriage isn't 50/50 anymore.  Often it is 70/30 or sometimes it is 98/2%.  Tim may have to cook, do laundry, clean the house and run the kids around on days when my body gives out (not to mention he does work).  I hate those days.  I hate not being able to be his partner.

Thankfully, we communicate well and talk constantly about this.  I have told him many times, "It is okay if you want to go and find someone who can do all the things you can so that you can share your life with someone and not have to take care of them."  He never agrees.  The divorce rate among those with chronic pain is between 75 - 80% depending on the source.  It is not easy to live with pain in the forefront of your lives.  Regardless of whether you love the other person or not.  It is a daily struggle to balance the needs of the individual, the couple, and the family and with each day bringing a different amount of pain it gets exhausting.  For instance, I can have 4 or 5 good days in a row and we all start to get used to that only for me to be back in bed for 3 or 4.  Though we have been through this over and over in 8 years, it still feels like getting hit in the gut when I have to go back to bed after a good streak.

Sometimes, the communication we work so hard on backfires.  Tim will often say (as do I) "tomorrow will be better", or, "we will get through it".  There are moments I want to scream at him - "Easy for you to say!" though I doubt it is.  I live with the guilt of knowing that when we said for better or worse, neither of us could have imagined this.  I know what he thought he was getting - a bassoonist to perform with, a mother for his children, a partner.  Though it breaks my heart, I cannot play the bassoon any longer as it creates too much pressure in my head (any wind instrument does).  I am a mother for his children but not in the way that I want to be nor in the way he wants for me.  I am not his partner....Tim often has to take care of me.  I do not bring 50% to the relationship anymore.

We see why the divorce rates are so high.  If you stop talking and sharing the burdens of being sick together the walls go up and the anger and resentment seep in.  We are determined to never let that happen.  My love for Tim is complete and unending.  The best I can hope for is that he never tires of taking care of me on the bad days and thankfully, he is spontaneous so he never minds changing plans so we can enjoy the good days.  Someone once asked if I would do the same for Tim if the roles were swapped - if he were the sick one.  In a heartbeat.  But it is easy to say that until you walk in it day in and day out.  I would never think less of Tim if he wanted to choose a different path and share his life with someone who could do more than I.  His happiness is as important to me as my own.  Thankfully, he still is here.

Celebrating the life of Guy

A friend of mine passed away a year ago today.  He was much more than that - he was the head of my pain team and was a passionate advocate of mine.  Guy relentlessly searched for new medications to try and help me cope with my pain.  He was wonderfully sarcastic and we shared many a smiles and a laugh or two as we dealt with the life of chronic pain.
Guy understood so much as he suffered from chronic pain as well.  We commiserated and bitched and then went back to the work at hand.
His amazing wife Jen is a good friend of mine and his children are wonderful, talented and smart.  Kyle and my Mary are in the same grade and Katelyn is in third.

Today, please take a moment to remember a person who changed my life and so many others.  Who advocated when there was no one else who wanted to take my case with my doctor as it was too complex.  Guy went out of his way to help me and I will be forever grateful for that.  Remember his family and their loss in your thoughts and prayers.

"What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal." - Albert Pike

Determination is like a Frog

Determination is like a frog in my life.  Once I have it in my hands, I can keep it there for awhile.  It might pee on me but it isn't anything that a little soap and water can't fix.  However, when I am needing determination and am lunging towards it, it constantly evades me.  Hopping faster away from me that I can chase.

I never used to have a problem being determined but being in pain changes the perspective with which I look and do everything.  I want to practice yoga 3 - 5 times a week.  I wake up and look for determination to get out of bed, get over the pain and get going.  It sits on the edge of the bed taunting me.  By the time I lunge for it, the damn thing has hopped off towards the door.  I get up and lumber after it only to watch it hop casually away.  The anger and frustration begin and the pain that I woke up feeling seems to overtake the desire to do yoga.


However, on days that others are expecting or needing me, I often can find that determination.  I think it is the fear of letting others down or the fear of being judged as "not capable" that allows me to capture the determination needed for that day.  Once I have it I can go for a few hours and accomplish much.  Though I suppose the question then is am I accomplishing much because I fear what others will think of me or because I am stubborn and determined?

My friends and family would all describe me as stubborn.  A trait that for the most part, I am proud of.  However, if I were so stubborn wouldn't I be able to overcome the pain and depression on those tough days and get the yoga mat out and go to town?  Wouldn't I be able to ride the recumbent bike for just 7 minutes?  Why cannot I use my determination for myself but only for others?

The days that I am in pain are the worst and after all these years I know it isn't the pain that bothers me as much as the not accomplishing anything.  I am always happiest working - whether that be a job, volunteering, playing with my kids, helping a friend, gardening, cleaning (I love cleaning - seriously I do), working on the house.  I struggle to understand why on the painful days those things which make me so happy are not enough motivation or determination to ignore the pain and push onward.

As I struggle with finding a balance between doing too much now that my pain is down to a 6, I find that the issue of determination is one that is more at the forefront of my thoughts than ever before.  It is almost as if I have become obsessed with doing things.  Too many days, weeks, months, and years I spent in bed in horrific pain.  It seems like it should be the easiest thing in the world to overcome pain that is only a 6...I have lived with so much worse.

Determination is my frog and perhaps we just need to spend some time together, eat some flies, and decide how to be friends.  After all, Kermit is a frog and I love him...