This Is Your Exit

 I started this last week sitting at Radial Café.  D and I had plans to go out for coffee that morning and as we approached the coffee shop I developed a sudden craving for my favorite “green” restaurant just a bit further down the road.  Radial shows up on my Facebook and one day they had a blurb about French toast with chocolate, strawberries and pecans.  I packed everything up and went over there to write.  And eat of course.  I had French toast again when D and I went. Not the same as before but absolutely excellent.

D was online and listening to the words that were coming out of my mouth but she was about a million miles away.  Not feeling well.  Post flu shot yuckies.  Piece of cake compared to the flu but still no fun and she had to go and landscape for a couple of hours at a client’s house.  I was busy at the time making MORE phone calls to various people about the Remicade.  When I called BCBS I spoke to Peter.  I liked Peter. Peter gave me good news.  Peter told me that I had in fact been Approved for Remicade and that was great but Peter did even better than that he helped me make it a little faster (and after all this god damn time any little bit helps) Peter informed me that if I gave him my doctor’s fax number he would fax instead of mailing the letter.  Not having the number handy I called Dr. Parris’s office and informed them that my APPROVAL letter was coming by fax, if they would so kindly give me the number, which they did.  I also encourage them to get their asses in gear and set me up an appointment right away so my first infusion could be as soon as possible. (To date I have not hear a peep out of them)

So after I had called Peter back and given him the fax number I took that piece of paper with the fax number and Peter’s name and extension on it and put it in my purse with my BCBS card.  It has been my experience that if you speak to the same people regarding your health and you find them to be even modestly good at their job and they don’t cause you to consider homicide each time you deal with them the process will be more efficient and less likely to encourage you to drink to excess and yell at the people you love most because you are so frustrated your afraid to light a burner on the stove for fear you may burst into flames.

I didn’t really have any plans for the afternoon, which I just happened to mention to Janelle at Dr. Parris’s office, as a little reminder that I am very ready to begin.  Truth is with the holiday it will likely be the week after that we begin.  We better or they are going to be on the receiving end of some really nasty calls everyday I don’t hear something. Something good.  How hard is it really to keep a girl in the loop?  Especially when she is not only checking in but doing some of the leg work to get through the process.

D has been writing quite a bit since she said goodbye while I did not give a farewell address and I have posted almost nothing.  There has been plenty going on in my head and even more going on in my days lately.

It all felt like the same things that had been going on for almost a year were running circles in my head.  I know that D has struggled with it, feeling like she was saying the same thing over and over.  In one way her issues were a thick layer of salt in my wound.  By no fault of her own. It made it hard for me be kind to her and deal with the mountain of baggage that had fallen into my lap.  After a very long tail chase I fell backward into a hole and have been thinking and planning on how to get out of the hole, sometimes I scratch and claw at it trying to get out.  Other times I yell and scream at the hole, taking a bit of the responsibility for being in the hole but mostly blaming the hole for being there.  My lessons revolve around all the feelings that have come in giant freight car quantities with the diagnosis and actual symptoms of Ankylosing Spondolytis.  After three TNF blockers nothing has been very affective at halting the inflammation that causes pain so intense and constant that when it abates I feel strange and unbalanced.  But that doesn’t happen often.  The inflammation is in there building tiny inroads, laying the foundations to bring my joins closer.  That would be nice if we were talking about my group of friends but we are not we are talking about my vertebra that are every minute closer to being fused to the neighbor vertebra, on each side.  They have put aside their differences and are willing to make the commitment for life.  My life as it turns out.

I spent about 15 years with a chronic disease before AS.  Lupus, while early on no one had really heard about it or knew anything about it more people seem to have an understanding of it these days and therefore acceptance.  In other words they don’t think of Lupus in the same way as Cinderella’s evil step mother, a total bitch but not real so in the end not a big deal.  The course of my SLE has not been that bad.  Once we figured out the vascular stuff everything else was pretty easy.  My AS is not like that. And we are back to no one having heard of it which makes it harder I think for them to grasp the meaning of having such a disease.  Unlike the path of Lupus (SLE) in my life I would characterize my course of AS with  words that would include   rapid, aggressive, and unresponsive to treatment and none of those are the things you want in a disease.  Crippling.  Painful.  Not way up there on my list of things I’d like to do, actually it rather gets in the way of what I want to do.

In the hand written version of this story (while at Radial there was no plug near us so I wrote in my journal) I rant about doctors and insurance companies but that is certainly nothing new so I am skipping it and moving forward.  Well so I was looking for the part where I wanted to jump back in and there is a rant about meds—and adult beverages.  Last week we returned to the neurologist for the follow up (read: pointless waste of my time, but time he gets paid for, so he asked me to come again- in 6 months.  Yeah, right) and he made several comments about changing my meds.  Uummm, let me think about that for a minute, no.  Dr. Parris, the rheumatologist that has studied these diseases and me for over 15 years works with me to keep the correct balance; you do no have permission to FUCK with the meds.  He also suggested I remove caffeine from my diet reminding me that most teas and sodas have caffeine not just coffee.  OMG, they do?  I HAD NO IDEA.   Maybe it just slipped his mind that I know how to read, I can even read those funny rectangles on food and beverages called Labels.  Shocking, I know.  There have been times when I gave up caffeine which my meds don’t really mention, alcohol on the other hand is mentioned on all sorts of little rectangles right on the pill bottles.  They even come in lovely colors such as neon yellow and electric blue and they strongly advise you not consume adult beverages of any kind while taking that medicine.  Well for me, that’s forever.  Now I have given up much and lost even more because of the damn diseases I take these meds for so while I am here and able to consume liquids some of them are going to contain alcohol.  And caffine.

With all the aimlessness and standard issue crap that I have been working on making peace with I slipped, tripped over my bad attitude and landed in my own private pity party where I stayed for a while.  There were no guests, except D every so often.  She mentioned to me that I needed to talk to someone other than her about it.  I was talking to other people they just don’t get it the way she does.  Well Steph does but her father-in-law is in a persistent vegetative state and her mom is dying from a very aggressive form of Alzheimer’s so she has her own party on occasion. It’s fine as long as you don’t stay there.  That is a terrible place to be stuck and I was feeling uncertain as to how to dislodge my self from the endless circles pain, frustration, helplessness, anger, if you have read more than a few posts you know the cycle.  Or maybe you have your own cycle.

Little more than a week ago I went over to a friend’s house to meet her daughter.  Bella had just moved back from Florida and was getting settled in.  Stella, her mom who is my friend had been anxious about having her come.  Stella had arranged a short leave of absence until they could settle into a routine.  I had been hearing bits and pieces of the story for months.  Bella was in an auto accident about two years ago and it left her a quadriplegic.   Stella asked me if I could come over and sit with her a few hours a day three days per week.  The day I went over and met Bella so that I could become familiar with what would need to be done, the wheels began to turn.  I am not pitying her, she is a fiery one, I was inspired and comforted by her presence.  I don’t do much some days, some times we sleep, but often we talk.  She made it through what most people would consider their worst nightmare and has not lost her spirit along the way.  I think we have both found not only a companion in the health care giver- patient sort of way but something more than that.  We have found a friend.

 

Sporadic

I know that my writing has been less and less lately.  I’m not sure exactly why.  There are so many reasons to choose from.  But I was sitting here piddling around, procrastinating about filling out this long form for my disability.  I have been chided by  friends to get it done.  Pointed out the sense of urgency.  I had that sense too but frankly it is hard to maintain after almost a year and half.  And damn it the thing is no fun.  It’s long and asks me how bad my life is sense I have become sick.  Well I don’t really need any reminders and I am having trouble seeing the humor in justifying myself all over again for the umpteenth time.  If I felt like this was the time, if I finished the paper work and had all the records sent from my doctors and then they would see the light and rule in my favor this time so that I wouldn’t have to do this again, I would be on top of this everyday.  But my sense is that when this is all done we are going to have to start over from the beginning and do it all again.  Another year of my life spent going rounds with these people.  Of course this time I have a new advantage.  I have an attorney.  They know what to say and do to make this move more quickly.  It was the attorney that suggested reaching out to my congressional rep so that my case could be assigned and after waiting for 8 months it was less than two weeks after the Congress Rep contacted the people who assign the cases and viola I have a case worker. !  So now I have some one to contact and ask how things are going and what they need so I can make sure they get it.  My attorney makes calls but so do I.  Reaching out to my doctors and personally requesting forms to be completed, records to be sent in my experience helps the process move forward more quickly.  After I manage to get through this hateful form I will make sure my attorney has updated information about my medication and I will personally call the doctors and politely urge them to cooperate with the attorney and send them what they need as quickly as possible.

Of course there are plenty of other things going on in my life which makes it that much harder to spend time doing something frustrating and depressing.  But it’s a means to an end. 

We didn’t celebrate Pride when everyone else did.  Our Pride committee made a compromise.  Last year due to the drought, ha ha (it’s been raining for three months), we had to move the party away from our regular location so we did not destroy the grass in the park.  This year we get to have our party in the park but not in the summer when everyone else across the states is having theirs, we are adding Halloween, which is a Queer fest every year to our Pride.  So we are gearing up for Pride on Halloween weekend.  It ought to be a hell of a party.

D has one more weekend to work and then she has some time off including Pride weekend of course.  It’s time to dig in and find out what’s going on and make plans with our Home Girlz.  We need a party.  A celebration.  Some time to take a break from the challenges and focus on the good things in our lives, and have some fun!

Well even if there are long spells between posts I am still here and I will post again.  I do hope to be able to refocus on my writing in the near future.  I have taken up some art work and with the amount of energy I have I can usually manage just one thing at a time.  Right now I am thinking of making things for Christmas so the real submersion into writing will likely not take place until the first of the year.  But then you will hear all about it, I’m sure.

I hope all is well with you and you have something fun to look forward to in your near future!

Yesterday. I Wish It Seemed So Far Away.

This is so long that it isn’t even about yesterday any more because it took so long to write.   It’s more an essay than a blog post but the events brought up so much emotion it took a while to write it all down.

 

I began my account of the notable events of the day in the paragraph that follows but having read D’s account I have decided to approach it in a different manner.

 It was easier to get up this morning than I had anticipated. D was still in bed when I made my way down the hall to the kitchen to make coffee and feed the cats.  Since I had to wash all the espresso parts and to go cups D was up by the time I reentered the bedroom with coffee in hand.  Having skipped the shower D was already dressed.  Reaching for the shower knob I told her I would get ready as quickly as possible. With no wardrobe quandary the biggest hold ups were  getting my computer together and …

That was as far as I made it last night because I could not stay awake.  D was still typing busily when I gave up and instead focused what little energy I had on making myself ready for bed.  As I sat down and made all my many adjustments in an absurd attempt to make myself comfortable so that I could write this, I could hear D in the kitchen putting the dishes away.  She spends so much of her time and energy taking care of me, protecting me.  It is in her nature to protect me, as it is with any one she loves, even when it is not possible.  There are things that no one can save me from.  The very idea of that wounds her deeply I think.

 Last week I spoke to my mom and she told me that the house, my childhood home, the one that I had lived in from the age of four until I moved away to college, the one that I returned to for holidays and family gatherings, the one that burned and took with it in that fire so many of those things that held memories of my life and my family, things that had been in my family for years, the house that in my adult life I returned frequently to so I could play with my nieces and nephew and to participate in their lives, that house was being foreclosed on in just a short time.   I knew it was coming but now I know exactly when.   Many of my memories from that house are painful.  Awful.  Horrid.  Many are happy, funny, pleasant reminders of the days when I felt love and hope for the future.  In the past three years all of those people, my family, that shared in those memories, have for one reason or many become distant from me.  Either by their own choosing or mine or by circumstances neither of us could control.  My family has been shattered.  Broken into many pieces and scattered all around.  Over these past years each of those people, that now are distant, have hurt me in large and small ways, intentionally and inadvertently.  Now the place that we had in common, some of us for more than thirty years, will be shortly removed from our future and relegated to our history.  In our here and now it has become a battleground. 

 A year ago I lived with my sister and when that came to a horrid and ugly end she moved in with my parents, two miles away.  Frankly I was shocked that Mom would allow her to live under the same roof as they have never really gotten along well.  Tthe longer they have known each other the greater the enmity between them.  When my sister, Kelli, and I ceased to share space she attacked me verbally with fantastic energy and wretched words.  Since that time I had seen her only once, at the memorial service for Daddy’s mother.  Some of my things from the house Kelli and I had lived in had been taken by Mom to her house, the subject of the previous paragraph.  Between Kelli’s presence and my health issues I had not retrieved the things.  During the months that followed my abrupt departure from cohabitation with my sister I had been moving things from there to my new place of residence in bits and pieces.  When I was in the area I would stop by and load as many things as would either fit in my car or I could manage before becoming exhausted.  A couple of trips included D or Daddy helping me by carrying and driving their vehicles which had much more space.  There were several boxes left when the house was cleaned out and Mom grabbed up some things she thought I might be attached to.  I don’t really know when that happened but Mom mentioned it to me a while back but at the time I was experiencing great difficulty driving, and remembering things, and with all the turmoil going on at my own house at the time it didn’t seem that high on the priority list.

 Not many months after Kelli moved into the house Mom took Julia (my youngest niece, whom my mother has reared since she was five months old) and moved out.  This is a long enough story without my explaining why my mother, a very accomplished system’s analyst is now broke and working at Wal Mart, but suffice it to say she is and has been in grave need of money.  From the time she left she knew that it was but a matter of time until the house was foreclosed on, therefore she planned to have a substantial yard sale before the bank took the house.  To that end she had been discussing what needed to happen before the sale with Daddy asking him to remove whatever things he wanted so that the sale could be successful.  Months went by.  When Mom left the house,  my parents finally decided that it was time to end their 32 year marriage.  They have not even liked each other for well over a decade.  During their marriage one of the things Daddy did to piss Mom off was to procrastinate.  Partly because he just does and partly because it drove her ape shit crazy kind of nuts.  So true to form Dad has put off making ready for the sale.  Mom really needs the money.  Dad knows this.  Mom gets psycho about money.  Dad knows this.  I lacked some crucial knowledge when I was thinking about what to do about my things that were at the war zone house.

My main thought process had to do with my sister and did not take my parents into account at all.  What I was thinking was that there were things there, not but a few boxes, that were meaningful to me.  Over the years I have lost much.  Over the past three years the losses have been immense and I did not want to add these things to the absurdly long list  just because Kelli was there.  That felt like letting her win.  Many of the things I have endured including many of the capacious and painful losses have been a result of my sister’s doing.  Frankly, I would be damned if I was going to lose anything else at her hand.  During the short drive to the house from where D and I had been I spoke to both of my parents about Kelli’s presence there.  Daddy explained that he had made her promise not to be rude or start anything with me, or D, while we were there.  And, by the way, he expected the same of me.  As if.  When have I been the instigator?  Uh, almost never in all my years and why in the hell would I start now, stiff and in pain often needing assistance to walk.  How absurd.  It was a demonstration of his understanding of my nature and current health.

 My intention was to give the things a quick sort, grab the items I wanted and get the hell out of there.  Mom showed me to the cache of mementos and I began to sort.  Dad went to retrieve a box and I think D went with him.  The house was a wreck.  The sale was supposed to begin on Thursday,  I think (it was Monday) and Mom was standing there complaining to me about the condition of the house and reported a comment Daddy had made that they should begin the sale that day.  The place was in no condition to have a sale.  I kept sorting.  By the time D returned I was about done.  It occurred to me later how totally fucked up my family culture was, and my up bringing because while there was yelling between my family members I had not really notice and was not terribly disturbed by it until my Dad raised his voice to a thunderous volume and ‘told’ my mother to get the fuck out.  Since I was not in the room I am not certain of the order of events but I heard someone slap someone.  D informed me that Mom hit my Dad in the face.  I was already moving toward the door when she came in and informed me we needed to get the hell out of there this instant and she scooped up both boxes, though I offered to carry one – the light one of course.  Following her to the front door I did not even glance around.  Backing out of the drive way I watched as my mother kept going even though D had paused to check for oncoming cars.  Being familiar with Mom’s rages I told D she needed to move quickly, Mom was not concerned with oncoming traffic, or us for that matter.

 As we put distance between ourselves and the insanity I was amazingly calm.  More accustomed to such scenes I suppose.  Anger and anxiety come later for me.  Probably a self defense mechanism I learned over the years.   At some point later that afternoon D got quiet and said, “I want to ask you a question.”  Her manner and tone gave me pause.  “Okay,” I replied tentatively.   “Did your Mom ever hit you like that?”  “No,”  I said, “she only did it verbally.”  The fact that Mom’s abuse was not physical made it take me much longer to realize I was being abused.  No one ever saw my scars and asked, “How did that happen?”  My best friend’s dad would ‘spank’ her, ( too hard, too long and for too many things) or smack her across the face, even this was at the time difficult for me to recognize.  It was a time when parents were rarely questioned about how, or how much, they disciplined their children.  I was an adult before I began to question the way my mother reared me.  I had been an adult for a long time before I judged her ways to be abusive.  It did not take me nearly as long to figure out that I’d had a fucked up difficult childhood but my home life seemed fairly normal to me, as normal as a child’s life could be who was being reared by their dad and stepmom, in 1977. 

 Growing up I found it difficult to cope with not knowing what I would get into trouble for each day when Mom came home from work. There might be no trouble at all she could, in fact, be happy and kind, but we never knew.  How was I to know that the things my mom said to me were not normal?  Everyone yelled once in while, right?  Besides  it could have been much worse, that was for certain, because that was something Mom was very clear about.

Being in that house with Mom, Dad and Kelli (and D), reminded me of my childhood because that’s who was there everyday when I was growing up.  When I was a kid my parents did not yell at each other.  Not in front of us at least.  Mostly they yelled at Kelli.  Not that I did not hear my share of chastising and admonitions whether deserved or not but I never heard as  much of it as Kelli did, not by a long shot.  Yesterday Mom did yell at Kelli and at Daddy.  She did not yell at me but it wasn’t long after the incident that Julia called and insisted that I needed to call Mom.  Hesitating I said I was in a store, that I was not doing so well my self and that I would “see what I could do”.  For some reason she latched onto that phrase and flung it back at me with heat and venom, with volume and tone to match.  I told her that Mom had nearly hit us with her van. “Well that should tell you that she needs comforting,” she shot back.  At some point she hung up on me, which was fine as far as I was concerned.  I get that she is 17 and Mom has been her strongest influence but it struck me as completely fucked up that her response to Mom’s complete disregard for D and me,  was that I should regard it without focus on myself and my well being (D’s too) and instead be concerned only about Mom.  Uh, sweetheart you must not have received the memo, I quit that song and dance three years ago and have taken all the verbal (written or otherwise) abuse I was ever going to take on that account.

 Just a few days ago I had a tentative relationship with my mom, one that had been utterly destroyed and then slowly and therefore only partially rebuilt with extreme hesitancy on my part.  Until that call  I still had a decent relationship with Julia who is as much a sister as a niece to me, having had the same mom.  While I have not had a major blow out with Daddy I have decided that my policy about one sided relationships does in fact apply to him and therefore if he was not willing to take some responsibility by initiating contact in some way at least some of the time that I would not see very much of him because I refused to be the only one calling.  He does not call me except on the rare occasion he is returning my call and I don’t call much at all.  Taking into account the situation with Kelli and Amariah, my eldest niece, and the fact the Seth, Kelli’s eldest son, never would allow me to get close to him, my family is gone.  They are the family of my past.  Aubrey, though I did not know it at the time, was the first of my ‘chosen’ family.  Of course he is blood and did not choose me, but he seems to like me well enough. 

On Sunday nights D and I get together with some friends of ours and have dinner at each other’s houses.  On occasion we move this gathering to a different night of the week, which is fine, as long as we get together.  These women, our home girlz, they are our family.  All my life I have wanted a family that had traditions, a family whose members stood by each other, who gave to each other, who loved each other without selfishness or condition.  I know it is asking a lot.  I was beginning to think it was asking too much.  Our little group doesn’t have much history, yet, but I am hopeful again.  I have people to cook for again, to be there for again but this time it is different.  This time, they are there for me.

Back and Forth

The following is an email exchange between the girl and me.  You know how email is you have to start at the bottom and read your way to the top if you want to read it in the order it happened.  A little background first though.  After an entire relationship of difficult situations the mounting issues of the last six months has finally gotten to us.  I am not saying that we never had a squabble, you can read about every tiff we have had until the past few weeks right here on this blog.  In the past few weeks I have not been righting much at all, not in my journal, not essays, not blog posts, hell I have barely written emails.  There are many reasons for that but that is another story.  In these recent weeks D and I have been struggling.  Arguing.  Disagreeing.  Fighting.  In ways that are out of character for us.  Last week we had a biggie.  Ugly.  Nasty.  Tearful.  Concerning.  We broke all the rules of a fair fight.  Brought up too many issues.  Had the conversation in public.  Didn’t listen.  Insisted we were right.  It took us a couple of days to work through it and smooth things out.  We have both taken a step back and had a look at our own thoughts and views about each other and our relationship and are working on stepping outside of our own problems, at least a little, and remembering we are on the same team.  We have not wandered so far that it will take a long stretch of concerted effort to bring it back around, it was caught early.  These are some things we have said since then.

  

I am ready to feel less tired and have more sex  I am happy that I can be of some comfort to you and that you like my ass. I think you smell good and are sexy, too! I like having a day with you! Let’s do try to keep focusing on the good things about each other – you do a better job of that than I do – I need constant reminders and I’m working on that. 

I love you! 

 

well i am just getting your email.  you are most welcome.  as you know i would be more than happy to offer to sex you up, well, almost anytime, most anywhere.  I have been thinking about you and i think both of us have been a little focused on the annoying things the other one does so i have been considering all the good things.  and there are plenty to consider.  your hand reaching for mine to help me, you stopping off at a store i like and bringing me something home, leaving me money for thing you knew i needed with a single word from me, picking me up and taking me to get my favorite scone and then to sit in a coffee shop together, (that has always been something we liked to do).  and then there are so many things that you can’t help or don’t even think of like the way you smile at me, your kiss, that fabulous ass, the way you move - in general- is sexy, i love to listen to you tell a story, most especially when it wasn’t one of those requests, i love it when you pet my head, rub my back, i do like that you are protective it makes me feel special and safe. (i will call you on it when you take it too far- get a little bossy, but then i am bossy too so what can i really say?)

love love,

 joey
 

I am still determined to be cheerful and happy, in whatever situation I may be; for I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances.     -Martha Washington

  


Sent: Sunday, September 27, 2009 7:44:54 AM
Subject: Re: Saturday

Good morning baby! How did u sleep? Me -like a log. Thanks for last night -it was amazing! Have fun today!   I left u some $ on the sink. 

Sent from my iPod

 

Text sent from my computer:

I love you deeper than the Atlantic Ocean

    

Re: Saturday


Its a good day for a movie since its so crappy outside. I’m glad u like the texts n emails. I am on my email thru my iPod at Honda. I brought my lunch today so I don’t have to get out in it to get something to eat.
Have fun! I can’t wait to hear the story! 
I love u more than how high lake lanier is! 

Sent from my iPod

 

 
On Sep 26, 2009, at 11:12 AM, joey goodwin> wrote:

thank you so much! really sweetie the little text additions (beyond the class update, weather, news and traffic) make me feel much better.  thanks for thinking of us, we may just go to a movie!!!  I’m glad it’s not raining yet, hope it holds out just right for you.  I love you deeply, even deeper than the water over I 285.  I have a story to tell you later.  Aubrey at his finest.

 XXX’s

joey
 

I am still determined to be cheerful and happy, in whatever situation I may be; for I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances.     -Martha Washington

 


Sent: Saturday, September 26, 2009 7:43:44 AM
Subject: SaturdayGood morning,baby! How are you so far today? Its not rainy yet. I am hoping we get as much done as possible b4 lunch. If u n Aubrey want go to a movie I will give u some more $ for zacks present tonight. Maybe u could find a PG movie. I hope u have a good day! I love u!
Xxxxxxooooo
 

 D
Sent from my iPod

Spat

Oh, now I have done it

how could I

say that

feel that

think that

?

She doesn’t like it

she abruptly—

SLAM

leaves.

Obviously she did understand.

I must have explained it poorly.

Maybe I was just

tired

emotional

stressed

jealous

in pain

.

Maybe not.

It matters not

the emotions are mine

no matter their origin.

She would say the same.

Open.

Close.

Question.

Answer.

Understanding.

Apology.

Kiss.

Hug.

Over.

Invisible

There is no alarm clock that sounds to insist I get out of bed.  This morning the clock read 9:15 when sat up and decided to meander down to the kitchen for some breakfast.  Contemplating cereal box nutrition labels I mentally added a few things to my to do list.  Finishing up with my morning meal I opened the dryer and began folding towels.  Recently having changed detergent the things I removed from the dryer smelled distinctly like the clean laundry they were.  My keen olfactory sense is not desensitized to the new smell, yet.  In no particular hurry I took my time smoothing the folds, evening out the creases then delivering each pile to its appropriate destination where it was tucked neatly into a cabinet or hung up for immediate use.  Once all the things were put away I started another load before heading back down the hall way to change the sheets on the bed.  Mundane tasks.

Preparing to leave for an interview which was to be taped and critiqued D noticed a small pool of water on the floor.  She grabbed the towel from the ring that holds it at the ready by the sink in our vanity and tossed it on the puddle to mop it up.  The fresh smelling towel I had just hung on that ring, the soft blue towel that had replaced the green one was suddenly lying in the floor.  Before I could censor my response I complained that I had just put that clean towel there.  She apologized in a hurried and somewhat aggravated tone asking if I wanted her to replace the towel.  No, I stated, thinking I want you to pay attention, to mop the floor with a towel from the dirty laundry not one I am going to dry my face on.  The damp towel ended up on the corner of the counter not back in its ring.  I think she was not sure what I wanted but knew she was in a hurry.  Off to do something important.

D had been helping me clean house to prepare for company that was coming to dinner, not that any of them would care, but I did.  Both of us working together can get the entire house clean in a couple of hours, which keeps me from feeling guilty about not doing it and it is all clean at the same time as opposed to the floors one week, the bathrooms the next week and so on.  When we finished each of us showered and sprawled on the bed TV on, laptops as well.  I thought she was deep in thought about a project she was working on until I looked more closely and realized she had a very different look on her face. 

Out came words of frustration followed by tears of the same origin.  Tired of feeling all the things that come with not having a job.  Some of those things are the things I felt when I first found myself without a job.  Panic.  Frustration.  Guilt.  Worthlessness.  Aimlessness.  She has done a great job filling her time which helps her cope tremendously.  When I found myself unemployed, sick and in a destructive relationship I felt lots of those same feelings.  But there is a huge difference in these stories.  A difference that while I comfort and encourage her eats away at me.    

We were sitting together in a coffee shop while I finished and posted my last piece, the one about the argument, she sat impatiently across the table all but tapping and staring in anticipation.  Everything about her body language said “Hurry up.”  When she finished reading it I asked for feed back.  As I always do.  History.  What she liked was the history I gave that built a frame around what happened explaining it in context.  Frankly that is what keeps me from appearing to be a crazy bitch.  So here I go again.  History.

Maybe a part of this comes from my illness – by that I mean that I am in fact accustomed to a certain amount of attention due to being sick.  Some times I don’t want that attention but some of it is comforting, that is the attention I like, the attention I miss.  That said I have also been the one people called on for – well, everything.  When my family was intact and I lived down the street my number was on everyone’s speed dial – and quite a few emergency contacts.   Being the cornerstone, the caregiver, meal bringer, comforter and all round ‘help you of a jam even if it takes a year’ was a role I was more than familiar with.  Somehow though when this job(less) problem came home to roost it took over.  Squashed me flat, more than once.

All those emotions I am supposed to be helping her through I cannot see my way around in my own life so how in the hell am I going to be any good at aiding her navigation through this?  During that argument conversation we had last week she spilled out all the emotions she was having the guilt, the sense of loss of independence, loosing a part of how you define who you are, waking up each day with a nagging cloud of aimlessness, worthlessness, as though all the things you had done before no longer mattered because you were not doing them NOW.  On and on she went about working hard and how that was the key to everything the key to having the things you want, to having success and the Holy Grail…the key to independence. 

Many times in the past months I have brushed her hair back, wiped her tears and told her I know how she feels.  I get it.  The truth is I don’t know how she feels.  I don’t get it.  I cannot solve those problems for me by landing the job I am highly qualified for and make a great salary because I bring such value to the company.  She can.  She will.  Soon.  For me that will not happen so I stare down those issues every morning without a solution.

Each day I wake up to a tinge of aimlessness.  No matter how many projects I have planned.  The guilt is multifaceted as I know I can’t get a job and help out with the money issues.  When we were having that ugly mean conversation I said something I thought D already knew, I was wrong.  Months ago I was having an email tiff (her word) with my mother.  She said to me that it ‘must be disappointing to me to have been unable to ever make myself independent’ and shared the pain that brought me by squeaking it out through my tears.  D had not known and immediately put her arm around me and said she was sorry, that I had not shared that with her.

Over all these months these emotions have been at the forefront for me to deal with.   When I said my wounds had been exfoliated raw with salt and vinegar that is that I meant.  Here I am in this moment working to make sense of this.  To accept that I will never have the career that I wanted and all the self satisfaction that goes with it yet each day I tell D to hold on, it’s just around the corner for her.  It will come.  She is smart enough, determined enough, experienced enough, she is the total package.  Completely employable.

Often I find myself jealous.  Not of other women moving in on my girl, but of my girl herself.  She has accomplished what I so wanted.  All she seems to see is the right now, the time between, not all the things that she has done.  Not past this to the things that she will do.  I have been jealous of her in the mornings when she was in boot camp and could go and workout with other people, I have been jealous of her going to work, of her clothes, her car, her house and even though I am welcomed into her life and take part in it, live in her house, drive her car it is not mine.  I did not accomplish those things. 

On an intellectual level I comprehend that my purpose is different but that does not change the hurt I feel over it.  On some level I realize that my accomplishments are more abstract and like so many things in my life more difficult to see.  My accomplishments on a daily level do not include catching errors or making suggestions that save the company time or money.  I wash clothes and dishes and other boring similar tasks.  After a while there is nothing for it, there is no ‘thanks’ that make me feel like it is appreciated and not taken for granted anymore.   There is a freshly washed towel in the floor.

It is a small thing.  Most days it would not bother me at all but today it.  Today it took over, hung over my head all day.  I suppose I still have towel hang ups.  I will always have towels to hang up and I wouldn’t mind so much if there was something else I did that felt significant.  Lasting.  Concrete.  Something I didn’t have to explain or justify because people understood and valued it.  If only it was so obvious.

Boxing

For months we have lived under the threat of layoff until it actually happened and now we live with the reality of layoff.  I have been through this before but it was just me.  Thursday night D got an email from her sister about the ‘terms’ under which she would be willing to help.  Obviously this upset D.  Basically what her sister wanted was to see all D’s financials and make sure she was not having any unnecessary fun living ‘extravagantly’ – by her standards.  In all the time we have been together I have never really seen all the financials.  There have been times when I mentioned something related to bills and how money is spent and she became immediately defensive so I backed off and came  quickly to the decision that I would stay out of it.  The problem now is that all the things related to the layoff do affect me and after all these months I lost my perspective.  At a really lousy time.

We don’t see eye to eye on money issues.  I have my own baggage where that is concerned.  And several other things that are related to the situation and they all collided and made a spectacular disaster.

We were sitting at the bar of a restaurant near the country bar where we were planning to go and dance.  She had been quiet and sullen.  Except when she was telling me what she thought about her sister’s remarks.  But that was in the car.  At the bar she was writing to her sister and the tension in the air was oppressive.  Strangling.  I stared at the liquor bottles.  I stared at the menu.  I stared out the window.  It was uncomfortable.  Did I mention we are both at that point in our cycles?  Email finished and sent we talked about how she felt about things.  And then… she implied that our situations were the same.  Sort of.  It was an ‘it’s like this you know.’  Yeah I know.  I thought about it for a minute and started crying.

When I lost my job I had some of the same feelings that she has but the layers and layers of other emotions, the ones I have been so desperately attempting to keep a lid on all boiled to the surface demanding my attention.  My attention was supposed to be on her.  On her crisis.  On her issue.  I was supposed to be listening and supporting.  Instead I unzipped my baggage and proceeded to empty the contents in her lap right there in the bar.  As bad as that was I didn’t stop there, oh no, I then opened the special box where I keep my view of the world and dumped that on top of the mess I had already made. 

How absurd for me to push my standards and philosophy on her less than an hour after I said her sister should not do that.  How hypocritical of me to do that when I am so outspoken about NOT doing that to others.

So why was I so surprised when all hell broke loose between us.  I have no idea.  It got ugly.  I have issues that have  been exacerbated, spotlighted, rubbed raw then been further exfoliated with salt and vinegar by all the things that have been happening lately.  Despite my efforts to keep them separate, to deal with them on my own they all came out of there neatly stored boxes where they are supposed to wait until I can deal with them.  Until I have the emotional energy and courage to take them on.  One or two at a time.  I really hate it when someone is careless enough to bump the book case that holds all these boxes.  All the boxes that hold my issues.  My shit.  If the book case takes a hit some times boxes fall off the shelves and there I am with a load of things to deal with all at once whether I have the energy or sanity to deal with them or not.  They came crashing down that night.  Let’s not lay blame on who knocked them off the shelf in the first place (because it was probably me and I have enough crow to eat and humble pie for dessert, thanks).

D was talking about being independent, working hard for the things that she has, hating to ask for help, having to justify herself to others and feeling judged for a situation that is beyond her control.  Uh, yeah.  Sounds like the story of my life.  But for me these things will not be remedied by landing a great job.  For her they will and very likely soon.  (One of the things I said to her, which I should not have, was that I felt she had to learn some lesson before she got that job.  She heard that all wrong.  But I think that she may be near the end of the lesson, she just doesn’t know it.  That’s fine you can learn all sorts of things and not realize the how or why).  For me all those things she has been struggling with are life long issues for me.  I was angry with her for comparing them because it felt like someone who broke both legs and had to spend three months in a wheel chair comparing their experience with someone who has been a paraplegic for ten years and will always be.  Yes it is a glimpse into that world but hardly the same experience. 

It made me feel selfish to have brought up my issues when she was having a problem.  I apologized for that and for telling her she had a lesson to learn.  I thought we were progressing toward a resolution.  I was wrong. 

A moment of quiet passed before she launched into a biting tirade listing all the things I had done wrong, all the ways I had not been supportive, all the ways I had hurt her and judged her and not validated her, not listened.  Ouch.  I was so hurt.  It was silent the remaindered of the drive home.  I had finished preparing for bed before I asked her if she was speaking to me since she had not said a word following her admonishments merely made one of those one syllable mocking laughs when I replied to the angry list of wrongs I had committed by saying that I had thought we were making progress.  Apparently I was wrong; the conversation was far from over.

During all the time she had felt the pressure mounting at work, during the time she felt the threat of loosing her job, during the time following the loss of her job I worked to support her.  Spent so much time and energy trying to think of ways to help her.  To sooth her.  To support her.  To encourage her.  Through her haze of anger and hormones she told me I had not done any of those things in fact I had done the opposite.  I was at a loss.  It seemed counter productive to go point by point down the list and remind her of what had actually happened.  To my mind she needed to figure that out on her own, so I said very little.  Frankly that part is a little fuzzy in my memory, until the part she said she was sorry.  A bit later I said to her how hurtful those words had been.   She apologized again.

Some time ago we were in the shower.  I was exfoliating my legs with a pair of bath gloves made specifically for that purpose.  For some reason I reached a point that I could not tolerate the scrubbing.  This is a very unusual experience for me and I made some remark about having enough of that.  D and I had been talking about something else (how intriguing that we would be speaking about something other than my personal dead skin removal) and the timing of my ‘enough’ coincided with something she was saying and she took it to mean I’d reached my limit about what we were discussing.  I was baffled by her sudden defensiveness having missed entirely the misunderstanding that had just occurred.  In previous relationships it was something that would have been common place but for me, well I would never.  I put my arms around her and whispered in her ear “If you get that feeling, if something I say or do makes you feel bad, pause, think about me and whether or not I would say or do that thing to hurt you.  Pause and think what my intentions would be. You know me well enough to do that.”  She agreed. 

Each of us has had much hurt in our past and at times we confuse that with our partner.  Our loving partner who has our best interest at heart all the time.  Sometimes the boxes fall and too much spills out at once.  Sometimes that makes for a difficult day for me but other times D gets caught up in it too.  I never mean for her to have my boxes fall on her but sometimes it happens.  On occasion I think it happens the other way round too, but I don’t know where she stores her issues, her pains and grief but I have bumped into them a time or two. 

Really this was a collision of all our stuff all at the same time.  That is never good.  Add hormones and it is surprising it wasn’t worse.  I am not a violent person.  My gloves are metaphorical.  We did manage to keep it in the ring and fight as cleanly as possible, considering.  It doesn’t happen often.  And we always manage to bring it all back together and clean it up when we are done.  So far I don’t have a box with her name on it.  Let’s keep it that way.

Better?

This morning I emptied my AM meds into my hand and began to take them as usual. Looking at them but not really paying attention (I do this everyday) I notice that there were two oval shaped pills, one slightly larger than the other. Without really thinking much about it I swallowed the larger one because I felt sure about what it was but left the smaller one on the bed for comparison. First I took out the bottle of pills I was sure the other oval had come from to discover the pill I did NOT take matched those exactly. Oh hell. Placing my med bag, the one which holds all the pill containers I began to open them up one by one, just to be sure. Possibly I had overlooked a change in manufacture and therefore size and or shape. No dice. Next step call the pharmacy. We went over my med list together with me explaining how it was shaped differently from everything even remotely similar.
By this time I had already taken the pill I had a positive ID on and text D to tell her what was up. Just in case. (Worse case scenario it was some totally foreign pill accidentally mixed in my meds that could cause some terrible interaction) Then I pushed a Nuvigil through the foil lined sample package and it strongly resembled the extraneous pill. As a rule I do not put wake me up pills or put me to sleep pills in the day by day pill sorter just in case I take the wrong time of day pills. It has happened once and that would have been a terrible day. When I began sorting my pills this way (a long time ago) I just didn’t add those pills because I only took them when I really needed them. I decided that the most likely explanation is that it was a Nuvigil so I skip the one I had just taken from the packaging.
Today instead of my 2 hour walk taking pictures I split 40 minutes fairly evenly walking and running. Additionally I made it all day with no nap and since I had no real reason (Aubrey, appointments) not to take one it felt like an accomplishment. Is it getting better? Maybe. Is it the Simponi? Maybe. Is it melatonin? Not likely. Maybe.  On the other hand I am having a variety of other symptoms but nothing as painful as before the TNF blockers or as maddening as being desperate to sleep every minute of my life.  Of course I have learned some interesting things about myself.   My writing style is obviously the essay format and I envision my books being collections of those.  It is a collage.  Little slices of my life that create a picture.  Since I have not been able to write as much or as easily I have been focusing my creative energies in other directions.  Making physical collages using a variety of methods.  Much of it is still in my head but it will come out soon.    So as with most things there is a blessing and a curse.  Every time I go through some challenge I look for the lesson.  Many times it takes years to figure it out, other times it is immediately apparent.  Most often though I learn something sooner and later.  For now I will take my new found interest in a different art form and enjoy it while I keep looking for what else there is to learn for the lessons always make it better.

To Do List

Not the things I needed to do but how it actually happened.

 

  • Slept late
  • meds
  • Tiny little breakfast
  • Went for a walk
  • Took many pictures along the way
  • Camera told me ‘memory full’ on my 1 gig card
  • Text D while walking
  • Got rained on all the way down our street
  • Decided to trade a bath for my usual shower
  • Learned more about soap scum than I ever wanted to know
  • Shaved my legs- way past time
  • Dressed
  • Felt that the whole day had run right by me
  • Went out to run errands
  • Dropped book in the Book Drop
  • Went to pharmacy
  • Gave in to urge for coffee and scone
  • Called pharmacy
  • ‘Yes you left them here.  Would you like Charles to bring them?’
  • “Oh yes, that would be very helpful.”
  • Threw a brief pity party to celebrate my scatter brained self.
  • Moved on
  • Made that phone call D’s been bugging me to make
  • Left message
  • Finished and copied letter
  • Introduced: envelope, letter, stamp
  • They all seemed fine with each other
  • Dishes
  • Retrieved mail
  • Sent letter
  • Removed laundry from dryer
  • Spent some quality time with D’s work shirts and a bottle of Shout
  • Started them washing
  • Decided on dinner
  • That’s as far as I have made it so far.
  • Later there will be trivia with friends at a local pizza joint
  • Maybe an episode of Dexter, season three that came in the mail today
  • Then it will be bedtime and tomorrow I will have another go of it.
  • Hopefully.

365

We talk about that night.  The night we met.   When neither of us really wanted to go out but did.  How there have been plenty of nights we went out and… nothing.  Plenty of nights we stayed in, but that night we ended up in the same place at the same time.  We did not take it slow.  Many people suggested we take it slow but we did not.  Life is too short.  I would rather dive in, get hurt and find out soon than to shuffle slowly along to discover this is  not the one and look at all the time that has been wasted.  But that’s just me.  And not just anyone can handle me.

People comment all the time now how we have been through so much together and how well we have handled it.  I don’t believe in coincidence nor do I give much credence to fate however I do believe there are people out there that resonate with your soul.  Not that you just have one person you are meant to be with but there are people you are meant to be with and the universe nudges you in their direction.  You can go where you are nudged, or not.  We went and look where we are now.

Breaking as many personal rules as we could we moved in after just two months.  There were some extenuating circumstance but it has worked out so very well.  We are right here for each other.  The first several months it was all me.  I was really sick and D jumped right in there and took care of me.  She even managed to start learning this whole parenting thing.  Wow, that’s a lot.

But those are just the outside things.  A nurse could have done that too.  Everyday we spent together I grew closer to her, learning more about her and the more I know the more I love her.  I love our late night talks in bed.  I do also enjoy the sex that comes before or after these long talks.

I love cooking with her.  I am ecstatic with gratitude that when we do argue we fight fair and always resolve the issue so that it isn’t out there just waiting to ambush you when you least expect it.  I love her ink.  Her blue eyes and the way she looks at me.  I love that she is a writer and gets that part of me.  I love that she is encouraging of my exploration of my artful side.  I love that we exchange notes, little notes here and there with each other.  I love that if I am having a rough day not only can she sense it but she will do what ever she can to smooth it out for me.  I love that while she does take care of me she also lets me take care of her.  I love that she is open minded and that we can agree on some basic philosophies.  I love the way she kisses me. I love it when she reads to me.  She is great at telling stories.  I love her spontaneity.  I love her love of food, wine and draft beer.  I adore the fact that when I do something she is grateful for that she expresses that to me.  I pretty pleased that she was grateful in the first place.  All of this but mostly that she love me.  That she sees me for who I truly am (and the fact that it did not make her run like hell) and she still loves me and tries everyday to love me in the way I need to be loved.  What I want most for her is that she knows that I see her and always try to love her in the way she needs to be loved

So here is to many more years together.  Growing, learning, laughing, loving and resting comfortably in the acceptance of each others arms.  Happy Anniversary my Love.

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