27 September 2012

Living in a "Tilted World"



I guess it is time to blog.


It has been a very long time …


… I think.


I crawled out from my bed today and truly didn’t know what month it was – I have been down for the count for more than a week – I lost track of how many days. I thought it was October something – until I consulted my trusty computer calendar.

The last time I blogged was over two weeks ago. It might be a record … it might not – I am too tired to figure it out.


I was waiting for the words to come ....


... the right words. The proper words. The respectful words.


... but they never came. So this will be a clumsy, awkward post. But I felt it was time. I have avoided writing about silly, trivial things since it felt, well, so silly and trivial. But I feel it is time - me ready with the correct words or not ...

In my previous blog - way back when - I mention that I am a firm believer in the random “Shit Happens” theory of why bad things happen to people. I was never a ‘Why me?’ type of gal – more a ‘Why not me?’ – what made me so special that bad things should not happen to me?

I realized sometime this month, well – probably last month if I am honest with myself that my world has shifted on its axis and I am now living in a topsy turvy world where I am at a continual incline – struggling just to stay on and not slip slide right off the edge. I am unsure what is over the edge, but I have a pretty good feeling that is isn’t good – not good at all – thus I struggle, and grasp, and reach and try to stay … here. With umpteen chronic illnesses now – I need to get my world back on level since the effort seems to be wiping me out …


Why did my world shift? Because I realized that the “Shit Happens” theory of mine has a teeny tiny exception …


… who knew?


As I said – I would always ask myself why I felt that I was so special that bad things shouldn’t happen to me …

… still the case. But all of a sudden I realized that there ARE two people in this world that I feel ARE SO SPECIAL that bad things should not happen to them. They are my parents. Can’t seem to change this feeling no matter how hard I try – and I have tried really hard – hoping that my world would flatten out … if you will.

The day I wrote “The Petals and My Mother” on 2 August 2012 – I had received an e-mail – one that I knew was coming, from my father with results of my Mother’s tests. Yes, he wrote, she has been diagnosed with Alzheimer’s. And even though I had seen the ‘signs’ and knew it was coming, it was like an anvil smacking me upside the head. And after reading the e-mail multiple times …


wishing …



hoping …



praying …



that THIS time when I read it, it would say something, anything other than what it said. But oddly – it always said the same thing.

I have received some really shitty communiqués in my lifetime, but this was a first – the re-reading something hoping for a different outcome. It felt very surreal and sort of ... not like me - I am generally more - grounded than that.


And then slowly my world started to tip …


My parents are the two most wonderful people in this world (OK – two of three – Gary included) and I cannot abide that this is happening to them. And I feel so helpless.


I don’t know what to do.


I don’t know what to say.


So I just weep and hide.


I have NEVER wanted to take something away from someone more than I want to take this away from my mother. My friend. My phone buddy. My mentor. My nurse. And no matter what I do …


… or where I turn


… I know that I will never be able to.


And for some reason, right now I just cannot live with that …


I remember at some point breaking my 'Never Say Never' rule. Someone was discussing a parent with Alzheimer's and I thought the unthinkable:


"I could NEVER do that."


I went on to think - thank heavens we are a family of stroke deaths! Faculties intact, one day a hand to the head, an 'Oh!' and keel over dead. The way to go. This is a first on either side of our families - so no preparation, no examples - all just new to us.

Sometimes - during those dark, lonely, painful, sleepless nights I wonder - irrationally - but yet ... still - did my "Evil Guardian Angel" hear me and decide that "Why yes, Lori, you CAN do that." and set things in motion? Ludicrous I know, but I am rather superstitious about saying that I could 'Never' do something since after, oh, about 3 or 4 of these thoughts and then the EXACT thing coming to fruition - I decided to be on the safe side and go with the 'Never Say Never' stance. It had done me well ever since.

Do I really think that I brought this on my mother?


No.


I do not.


But it still stands: I feel as if "I could never do that" ... so things are at a sucky impasse ...


My heart breaks for my parents, for lost conversations, for changes that will happen …


not tomorrow, or the next day – but sometime …


and I just cannot go there.


But one day - I will have to and I hope by then that I am over this immature snit, and more, what? Prepared? Can you really prepare for something like this? I really need to be, but know in my heart that I won't be - I will do what I have always done throughout trials in my life - hang on for dear life and make it up as I go, fly by the seat of my pants ...


... I really know nothing else in the way of coping skills - how pathetic is that?




And since I mentioned it in my last blog - there is a wonderful song that I recently heard from Matchbox Twenty's new album North. They explain that it is about a couple that has been married for 40 or 50 years and that the wife has Alzheimer's. Yes - a wee bit too timely for my taste - but it is absolutely beautiful. That I cannot listen to it without sobbing uncontrollably puts a bit of a damper on it though.

The chorus has a line:

"When you don't know, I will" and they explain that the husband is telling her that even if she has forgotten, he remembers so everything will be OK.

Why, oh why did they have to write this beautiful song? I cannot stand to listen to it but it is so beautiful and haunting - I cannot bear not to ...




Note: As I mentioned in my previous post - my mother has given me permission to share this.

06 September 2012

What is This Feeling?


Today was my monthly doctor’s appointment.

Got in my car and headed out as usual. Made a vow that I would not take any photographs while driving. I sighed heavily as I drove past beautiful fields of mist with a hint of a sunrise in the background. I almost didn’t care. I felt that this might be a wee bit odd.

Got on the Westpark Tollway to discover that for some reason known only to the Houston Commuter gods, it was a parking lot.

As I inched along, quite sure that I would be late for my appointment, I realized that pretty soon a huge yellow ball of fury was going to rise above the trees that I saw it hiding in. As I slowly inched through the dip at Hwy 6 – I discovered that I was holding my camera and that it happened to be on.


Odd …


So I decided to snap a few shots.

Here are a few – I so dislike ranting and raving on my lil’ ole blog without photos. And I have a feeling this is going to be a long one … so I will throw in some photos along the way just to break up the monotony …


and the whining …


As I was driving along holding my camera, I discovered that I was rather indifferent to the entire ‘Should-I-take-a-photo-of-this-beautiful-sunrise?’ issue.


Odd …


I decided to think about this as I inched along with the gazillion other cars on the toll way.

Lately, I have had a torrent of emotions rushing about in my brain … most of them not good. This is a bit unusual for me and I understood that, in part, had to do with a very large, very sad issue that I have been trying to emotionally work my way through.

Since it involves someone that I love more than life itself, I am rather emotional about it. She has given me permission to write about it, but no matter how deep I dig – I cannot seem to unearth the appropriate words. For me this is rather problematic since writing is my therapy.

I have a feeling that soon, this issue and my inability to write about it will resolve itself. Today, out on a big brown UPS truck is a CD with a particular song on it. It is the new album from Matchbox Twenty called "North", the song called "I Will". The satellite radio station that I listen to have these little ditties where before an album is released for sale, they have the artist or group come in and play it, track by track, in its entirety. While they are doing this, they discuss each song, or discuss how it came to be or how it changed along the way – just sort of talking about stuff pertaining to the song and the album – rather informal and I actually have found them quite interesting.

Unfortunately, for me – that is, they hit a song where, as they started to discuss what it was about – I realized that I was in terrible trouble. It is a song about the ‘BIG’ issue that I am trying to get my heart and head around. Then, unfortunately, for me – they played the song. I was rather surprised to discover that I could cry as I did. Racked with sorrow, a paroxysm of sobs so severe that they hurt - I seemed to be completely lost in the moment and unable to extricate myself and find safer emotional ground. The song is rather beautiful and haunted me for the rest of the sleepless night.

I searched and searched for the lyrics online, but since it was not even for sale at the time – I could not find them.

As my satellite radio station is wont to do – it replayed the ‘Track by Track’ session numerous times. Since I am often at my computer with this station playing, I generally get to hear it more times than I care to. Often I have to jump over to my trusty iTunes since I get rather bored hearing the same discussion over and over.

Each time I got on my computer to discover they were in the middle of another encore, I would freeze with indecision. Should I listen? Did I want to hear that hauntedly beautiful song again? Was I up for a huge weeping session? Was I ready for the rest of the day to be shot to hell?


No matter what I answered to the series of questions that ran through my head – I could not just ignore it. About the fourth or fifth time I heard it, I realized that my emotional reaction to it was not waning even a little bit. Generally, if I play a song multiple times – I get better about it hijacking my emotions and I can sort of emotionally prepare myself so that it does not take me to the deep end of the pool. The ‘racking my body’ types of sobs was getting old and annoying, the huge deluge of sorrow and despair was really, really not fun and I was finding it all untenable. So … the next time I sat down at my computer and discovered it was on again – I clicked the ‘pause’ button and started up my iTunes.

Unfortunately, for me – I did something rather odd after that. I got on Amazon and pre-ordered it.


It arrives today.

I am not looking forward to it, but I am obsessed and want the lyrics. I am pretty sure that it will be the catalyst that opens the gate and more words than I care to use will come flooding out. As in all of my writings about a particular situation – if it is to be therapeutic at all for me – it must be the RIGHT words.


‘Ay, there’s the rub’ …


So … I am planning on a wonderfully wretched, woeful, weepy afternoon.

Good times …


Good times ...


Hmmm – I started out discussing my ‘situation-for-which-I-cannot-find-the-words’ to sort of segue into my current, unfamiliar emotions about another thing. I didn’t realize that I would ‘blather on’ for such a long time and a huge red neon sign:


“Whining”


is flashing on and off in my brain.

Sorry about that … you may stop reading any time. I just need to write this – and maybe learn a thing or two about myself and my current situation if I steadfastly trudge on …


Ever since I heard the words: “Chronic Mono” my feelings about my health and how it affects my lifestyle have been in the forefront of my brain. I have mentioned before that ever since April of 1992 I have felt like I had the flu - every single day. That’s how it goes. Sometimes it isn’t so bad and sometimes I am in bed too sick to even read a book. And as I said – that’s how it goes.

It used to be that I could knowingly overextend myself for something I really wanted to do – knowing that it would put me flat in bed for a few days, but that if I stayed flat in bed for a few days – I would get ‘better’ or my body’s definition of ‘better’. Sometime last year I realized that this was no longer the case.

If I overextended myself, the usual happened - I was ill and I would put myself to bed to rest for a couple of days, fully expecting to be back to my body's idea of 'normal' after two or three of these 'manditory rest' days. But sometime in the past couple of years this routine stopped working. I would become rather ill - and generally not because I had overextended myself - I was feeling quite ill all of the time, thus did not feel up to overextending myself - I would just, at random times start feeling much more ill than my 'usual' and would end up in bed. This started the beginning of a plethora of tests to see if somehow my situation had changed. And that led to the words: “Chronic Mono” and a discussion with my doctor that this situation will probably not change. NOW I feel - as before - that I have the flu – but NOW it seems about doubly worse than what I am used to. The ‘will probably not change’ part bothers me. The entire situation sucks.

That being said – I am a proponent of the theory that “Shit Happens”. That it is random and everybody is within range – there are no exceptions, nowhere to hide and does not discriminate. Thus over the years I have tried, when I happen to be the one that is ‘hit’ to shrug my shoulders and get on with my life. I am not a “Why me?” type of gal. If the question happens to show up – by another asking me or somehow sneaking in sideways somehow by me – I immediately answer, in all honesty: “Why not me?”. I am a firm believer that in the world of “Shit Happens” it is an even playing field – and why would I think that I was so special that somehow I was exempt? It has really never been an issue or something I have dwelled on – it just is what it is and I know that.

I am still a believer of this theory to explain life in general, but somewhere, somehow, something has changed.


As I type this, Gary is in Utah attending a wedding of one of our nephews. At the time the question of whether or not I would attend – I was rather ill and couldn’t conceive of travel. That my doctor’s appointment was on the same day also presented a problem, but one that could be worked around. I receive my monthly prescription of my two types of morphine, plus a few other extremely controlled prescriptions at my doctor's appointment and, due to the fact that they are extremely controlled - they are not issued early … ever … by my doctor. I would have had to reschedule for next week and had a few days without my usual meds. I would rather not think of it as an issue where I had to choose between morphine and my nephew – but there you have it … in addition there is the issue that travelling is hard on me and I am a wee bit ill at the moment, but still somewhere in my head I feel rather ashamed that I picked the morphine.

It bothers me that I seem too ill to travel. Gary was going to stay in Utah until Sunday. It is a nephew on his side of the family and since his mother passed away (his father had passed away before her) he is not up there much and does not see his siblings and their families like we did before both his parents were gone, so he was going to stick around for a bit.

Then work reared its ugly head and he needs to be in Italy by Monday morning (Italian time) for meetings. He changed his flight and he will be home mid-afternoon on Friday – turning around and flying back out again on Saturday.

When he first mentioned that he needed to go to Italy – a very odd, unfamiliar feeling washed over me. I was confused – what was this feeling? Why has it totally overtaken me? I thought about it for a while and realized that for the first time … ever … with his work related travels that I was jealous.

I told him I wanted to go. He explained that he didn’t really know the situation this being his first time over and that it involved long days with some evenings givinig him almost no free time. He said he thought that this would not be the best time for me to tag along. He said he would have a better feel for the situation of me tagging along after this and that the next time he would add a few vacation days and we could do it right.

I had said OK, but I was very frustrated. I have not travelled at all this year since I have been so ill and have a SERIOUS case of cabin fever. I am also going through withdrawals of ‘no photo taking opportunities’ and that is a tough one.

Rationally, I realize that I have been too ill to travel and thus, take photos of something other than my house. But ever since those words: “Chronic Mono” and the issue of travel have come up I realized that I was not only jealous of Gary I was angry. Really, really angry. My health issues have brought up an entire book of emotions in the twenty years that I have been dealing with it, but as I think back – seething anger has not been one of them.

Frustration? Yes.


Annoyance? Oh, my yes.



Inadequacy? In spades.


Guilt, distress, envy, deficiency, anxiety, loss, desolation, worry, exasperation, unhappiness, boredom, displeasure, irritation, dismay, distress, sadness, depression?

Yes, yes, yes … etcetera, etcetera, etcetera …



But not really anger.



Not really despair.



Not really defeat.



Not really failure.



This is no longer the case, though. It is a new situation and one that I am extremely unhappy with.


As I have mentioned several times – as an advocate of the “Shit Happens” world – situations that while I might have not had anything to do with the fact that something ‘bad’ has happened to me – say … as in insurance company speak: an “Act of God” type incident - my main goal is to react to the situation in a manner that meets my approval.

Surprisingly enough – being seething mad at the fact that I am a bit too ill to travel and thus take photographs of new things does not meet my approval.

I know, shocking, isn’t it?

But there you have it.

I seriously cannot come up with another situation happening to me (my family, it seems is another story – something ugly happens to them and I can get extremely angry about it – thus we have to leave them out of this) I cannot think of a time where I have been this angry over a situation I find myself in. And it is an anger that seems to not wane as time goes by.

Since the words “Chronic Mono” implies that it is not a short term issue – it becomes problematic to me that I am livid. I know this is not healthy. I know that it seems to be a package deal – bonded to depression, hopelessness and despair.

I need to fix this.



I don’t know how.


The other day Gary was talking to me while he was preparing something for his dinner. He was in the kitchen and I was in bed reading. He had said that arranging his trip to Italy was not going well. He said that it looked like he was not going to be able to get a flight directly to … wherever he needs to be … and thus forcing him to fly into Venice or Rome and drive there.

Apparently he expected me to answer this. I, in another lifetime would have sarcastically said something like: “Poor baby” but instead I started to silently cry as a heavy, deep depression settled about me.

As he waited for an answer, he said “Not even a response?” I just kept crying. He gave up after a bit and finished preparing his meal and that was it. But I couldn’t snap out of it. About 24 hours later I apologized for being so withdrawn and tried to explain it to him. This is rather difficult since I don’t really know myself – explaining it to someone else has a few problems.

When I finally got out that I was just so immensely angry – he said: “At me?” I told him no – that I was angry about my current situation. That he could even think that I was angry at him seems so … sad.

I know that I really need to fix this.


I know that.


I want that.


I need that.


I have no idea if I have the skill set to do so.

But something needs to happen. Really, really, really – and soon.


Looking back, after I had my ‘non-discussion’ of Italy with Gary, I seemed to make some very unwise decisions. I had started a book my sister had urged me to read. On page 19 was a statement that upset me. It enraged me and I disagreed with it - and since it was the basis for what the book was all about, I decided that I just couldn’t read the book. I wrote her an e-mail to apologize, but that I just couldn’t read it.

Oh, if I could have just left it at that – but the new me … the seething, angry person – seems to be an idiot – that I am an idiot is common knowledge – but I have taken it to an entirely new level. To put it kindly – I … vented. It was not nice. It contained some very ‘not nice’ type of words. It was not an attack on her – or so I thought, but thinking back on the e-mail now – it sort of was an attack on her – a sneaky sideways approach. It was mean.

I am not a mean person.


Really.



It is something that I have known about myself – I am generally a kind person. The Golden Rule is important to me. I have tried to keep it in mind as I stumble along in this life.

Apparently I have tossed the ‘Rule Book’ out the window.


She never responded to my e-mail and in a somewhat fanciful, delusional way – I have hoped that she didn’t get it. But I am pretty sure she did.


My son, around this time had texted me something that was rather upsetting to me. And again, I decided to whip out an e-mail. It was harsh and hurt him – which is something that I try really, really hard not to do. As I wrote it – I seemed totally unconcerned with that fact that it would hurt him.

I sort of snapped out of it a few days later and realized at this rate, I could be estranged from my entire family in under a week. Throw in Gary’s side of the family and make it two weeks. I told myself I needed to knock it off. I think I will come up with a set of rules to live by when in the grips of this new, all-encompassing anger – starting with “No e-mailing family or friends about anything … if absolutely imperative they get an answer for something from me – it must be a straight ‘yes’ / ‘no’ or one sentence reply”. I mean, really … how much damage can I do in one sentence?


OK – don’t answer that …


I think the rules need to be thought out for a bit longer …


Hopefully I am getting a handle on this anger thing. Now that I know what the problem is, and have given it a considerable amount of thought – I am hopeful that I am smart enough, emotionally mature enough to work this out.

Apparently I have a ways to go …


The other night I mentioned to Gary that I did not have his itinerary for his trip to Italy and basically know nothing except for the fact that he leaves on Saturday. I told him that I didn’t want to talk about it, but could he just e-mail it to me? He handed me a copy of it the other night. It is sitting around here somewhere – but I cannot bring myself to read it.

Is he going to Rome or Venice to start his toodling around the Italian countryside?


Where is he supposed to end up?


When does he get home?


I have no answers to these questions.


All I need to do is pick up his itinerary and read it.



I’ll get right on that …







… maybe tomorrow.