Wanted: Extended Life, with a Side of Laughter

I started my blog in 2008 with great trepidation.  Doing research on the pit falls of writing online, I came across a very funny essay entitled “How to Dissuade Yourself from Writing a Blog”.  It pretty much assured you that what you would write would be utter drek that no one would ever read.  Or, if through some miracle they actually found your blog, they would laugh themselves sick at your ineptitude.  Naturally, I believed I would be an exception to these rules.  So I took the plunge.

At first I was focused on losing weight for my son’s upcoming wedding.  So I wrote about swimming at the local health club and what I ate for breakfast.  Riveting stuff, right?  The words were stilted and formal, dull as dishwater.  Painful to read now, especially since because of immobility and medications I have gained about another zillion pounds.  Then I fell and broke my shoulder.  It was the kind of injury that simply consumes you.  So that is what I started writing about.  The craziness of the fall, the insanity of trying to obtain the care I needed, it all just poured out.  And it poured out in my own way, almost a sort of stream of consciousness.  My readership jumped by over 100.  A friend once gave me the most incredible, touching compliment.  We hadn’t seen each other in ages.  After chatting for the first time in over a year, as we said goodbye I said to her “It has been so good to hear your voice!”  She replied “I hear yours every time I read your blog.”   I could not have asked for higher praise and affirmation.

I began to think in Blogese.  Everything was potential fodder for my posts.   I was lucky enough to be able to attend two separate blogging conferences, great opportunities to network and keep up enthusiasm.  Always on the lookout for potential content, I composed posts in my head all the time.   My motto was one that I had seen on a novelty t-shirt:  “I am SO bogging this!”  Although it was never, ever my intention to exact revenge on people who had treated me poorly.  Well, except perhaps when I was laid off by those incompetent nitwits (long story, read about it here ).   Writing about negative experiences in my own life could possibly be perceived as resentful and/or vengeful, but, again, it was not my plan to deliberately hurt anyone.  The stories of our lives reflect ups but also downs.  Unfortunately, writing about painful incidences can have the appearance of good guy (me) vs. bad guy (them).  I have tried very hard to take ownership for my actions and life choices, to acknowledge when I have been an ass or totally wrong.  I have also tried to be fair to those who have hurt me, working very hard to present a balanced picture, as no one is purely good or bad.  And I have worked hard at understanding and presenting what I have perceived as their motivation. However, for the most part I tried to put a lighthearted spin on my incredibly eventful life, as there are few things I enjoy more than making people laugh.   And while I love to laugh, I didn’t realize quite the impact I had made in that department.

My darling friend Christine recently hosted a small, informal get together to honor my 60^th birthday.  She put a journal on the table and asked people to write comments in it, either a note on how we had met or a fond memory.  As I read through this treasure afterwards, one thing jumped out at me.  Nearly every single person stated one thing they loved about me was how I made them laugh.   I was amazed and touched.   And saddened.  Because I simply don’t feel very funny anymore. Having been virtually housebound and isolated for the past two years, I find it harder and harder to hold a lucid conversation, never mind be funny.  It was hard to laugh at MS.  It is even harder to laugh at metastatic cancer.   Being aware that MS had the very real potential of significantly shortening my life was painful enough.  But having cancer that cannot be cured is devastating. 

I was stunned to note I have written fewer than ten posts this year, opposed to an average of over 50 a year in the past.   But writing is what I am meant to do, a need rather than a want.  Despite some recent criticism by people I love, I have to keep on writing.  Not only is it good for me as an expression of what I am, I get feedback from people, publicly and privately, who tell me how much my words mean to them.  I have to believe that is one of the reasons I am here, one of the ways I can make a difference.   

I am trying hard to live my remaining life to the fullest.  I pray constantly for dignity, courage and, if possible, duration.  I pray for discernment of what meaning my life was intended to take.  I have finally obtained my new power wheelchair.  Now I have to figure out how to get out more.  I want to volunteer where I can.  I want to create a charitable foundation to provide opportunities for people who have encountered crises, to help them over humps the way so many have helped me.   I want to give back, to have a positive impact on this world.  And I want, no, I need, laughter to be part of my life again.

 









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Dispatch from Room 557

Rehab is a world unto itself.

I think it is the lack of privacy that is getting to me more than anything.  There is not one aspect of your existence that is not scrutinized and made fodder for casual discussion amongst the staff.  What is sacrosanct for you is routine for them.  And that is, after all, their job.  But because there is no Cone of Silence, you hear more about yourself and your co-inhabitants than you ever would have wanted to know in a million years.  I am horrified to hear my elderly roommate reporting intimate details about my body functions to her friends and relatives.  I can’t imagine they are all that thrilled either.  At least those who are under 80 and not demented.

All rooms are doubles and, from the sound of it, no match is an ideal one.  Everyone has an issue and I am no exception.  Sharing a room with a seriously ill 85 year old with mild dementia is in turns humbling and exasperating.  She is truly suffering, and whimpers a good part of the day.  It makes my heart break but it is also extremely upsetting to listen to.  She is up multiple times during the night and, as a result, so am I.  The television blasts even though she is not watching it and I have to ask for it be turned off from in front of her sleeping form.  She is experiencing significant, audible gastric distress and I, apparently, am particularly susceptible to the sounds, as queasiness is becoming a permanent condition for me.  If I have to use the bathroom, it never fails that the aide has gotten her there first, which will mean a wait of at least 45 minutes while she is taken care of and washed up.  She needs help with her tray that I am too weak to give her, which means I have to sit and listen to her struggle until the staff comes in to help her.  And then there was the panic when she was apparently dreaming and called the nurse to report there was something seriously wrong with her roommate (me).  I was sitting on the edge of the bed reading as I heard this transpire out of the corner of my consciousness and an entire team had rushed in to resuscitate me before I could say a word.  They looked at me and I looked at them while she insisted there was something substantially wrong with me.  Which there clearly wasn’t.  If nothing else, it got everyone’s heart rate up a bit.

But then in the night I hear her murmuring, offering thanks and praise to Jesus in gentle little whispers.  I am chastened by her simple expressions of faith in the face of such adversity and pain.  With gratitude, I silently join in.

Physical and occupational therapy is hard work but, I am pleased and surprised to find, effective.  I can feel some strength creeping back, although stamina is slower in returning.  The staff is no-nonsense but incredibly kind at the same time.  My fellow patients are a fascinating cross-section, but each individual is a study in courage and accomplishment.  Some have had strokes, some are simply weak from advanced age, some are recuperating from surgery.  It is awe-inspiring to see how hard they are working and how determined they are.  There are some exceptions, those who are frightened and confused, those who are resistant and at least one dirty old man, but most are valiantly giving it everything they have. 

There is another woman here with MS.  The first day of my admission I was cheerfully told by a few people that we would be introduced, that I would like her, that she was very nice.  Which I had no doubt of.  But it never fails to surprise me that people consider having MS to be some sort of choice or hobby that connects people who have it.  I have no more in common with someone with MS than with an average person.  If they had said they would introduce us because she was a writer too or was a movie buff or lived in Ocean Township, that would make sense, but not based on the disease we both have.  And when I see her in therapy my heart sinks.  She is very, very ill and extremely impaired cognitively and physically.  What were they thinking?

The second day I am here (hmmm, or maybe the first?; it is so easy to lose track), I am interviewed by the team neuro-psychologist.  The mini-mental exam is interesting, but not interesting enough for me to rise to the challenge.  I just cannot wrap my brain around eight (or maybe nine?) unrelated words she asks me to remember and repeat.  I ought to be embarrassed, but I just don’t care.   Considering how competitive I usually am intellectually I am astonished at myself, but it is no incentive.  I have no interest in those eight words and they just won’t stick.  We return to them maybe six or seven times before giving up.  I never do remember them all.  It is a pretty humbling experience.  But not one I am particularly upset about.  This is not a good sign.

My independence has slipped away over the past year as the lymphedema in my legs limited my mobility and my function.  I did not put up much of a fight, as I am just so weary.  It seemed as though I had hit that wall of accomplishment and was just through with everything.  Hard earned career was over and done with.  Weight gain had rendered me hideously unattractive and uncomfortable.  I no longer bothered with getting my hair and nails done.   I don’t wear jewelry anymore or wear nice clothes.  What’s the point?  Not yet 60, I could see no future.  But the therapy here has had such an impact in so short a time that I wonder, maybe I will drive again?  Maybe I will be able to get myself somewhere to meet a friend for lunch or go visit my dad?   One of the nurses (Becky, I just love her!) is chatting as she wraps my legs and says offhandedly “Miracles happen all the time, you never know.” 

Now those are eight words worth remembering.

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The Week That Could Have Been Worse

Because I had a crappy week, I almost did a whole Kafka thing to start this post, about waking up to discover I was a bug, blah, blah blah.

But I realized, as this is my life, I am certain to have even worse weeks in the future, like getting arrested or something. Oh wait, that’s already happened too (I’ll tell you another time). So I’ll save The Metamorphisis for then. It was a tad melodramatic. A giant cockroach. ha ha ha ha Sigh.

This week it felt like everything I touched either broke, got dropped or went wrong. But don't worry. I'll have so much fun writing about it I will end up not minding a bit. :)

My work week, under pressure for hundreds of deliverables, was almost a total wash because I couldn’t access the remote system to my office for three days. Tick, tick, tick….I will probably be working all weekend to make up the work.

Tysabri infusion totally knocked me off my pins this month. I slept for 14 hours straight afterwards.

Then:

Car wreck and insurance issues. Grrrrrr!!!!

Gas company issues. Grrrrrrrr!!!

Mortgage payment issues. Grrrrrrrrr!!!! Although this one was mildly amusing. Two calls received from the mortgage company. That’s odd. I check online bill pay. Yep, mortgage is paid. I call to check on the problem. I tap in my account number as asked by the automatic system and a sweet little recording tells me everything I already know, how much I paid and when I paid it. And an arrears of $7000. I literally dropped the phone. I started pressing ‘O’ like mad to get a human being. And I got ‘John’.

John had a definite accent, but I couldn’t place it. I started blabbering .

Me: $7000! BLAAAH!!!! $7000! BLAAH!!!! $7000?!?!?!
John: Oh well, thank you Mrs. Cooper, I will ask you to please not worry about that.
Me: BLAAAAH?!?!
John: No, thank you Mrs. Cooper, this is nothing to worry about.
Me: BLAAH!!!
John: No, really thank you Mrs. Cooper, this is not a problem. This was a mistake in the recording.
Me: BLAAAH BLAAAH BLAAAAAAH!!!!
John: Well yes, thank you Mrs. Cooper, I can understand your anxiety about this unfortunate situation, however this is an error which you are not to be concerned about.
Me: Blah?
John: Yes, thank Mrs. Cooper, this was a mistake.
Me: blah?
John: Yes, so thank you, I offer my apologies for the nervousness you experienced.

And at that point I was almost coherent again.

John: However, thank you Mrs. Cooper…

Me: BLAH?

Poor John was experiencing more anxiety and nervousness than I was.

John: …thank you, I am so sorry to tell you this and there is no reason to be upset however there is a $4.02 discrepancy in the statement we sent you and the actual amount that is owed. So we can accept an electronic payment for this $4.02 and as a courtesy we will waive the usual $12.50 fee.
Me: $12BLAAAH50?!?!
John: Oh no!! No! Thank you Mrs. Cooper it is waived, waived, it will not be charged to you.
Me: blah?

It took ten minutes of repetition before he got all my bank numbers because of a very subtle language barrier. Finally I said:

Me: So John, where are you located?
John: Ah Mrs. Cooper, thank you for asking that. Our corporate office is in Iowa.
Me: But you’re not in Iowa, John, are you?
John: Ah, thank you Mrs. Cooper…heh, heh… he laughed nervously…thank you, but we are not authorized to disclose that information.
Me: But it is not Iowa, is it? Or even the United States? Or even this continent, is it?
John: heh heh Thank you Mrs. Cooper, I am sorry, but thank you we are not permitted to disclose that information. heh heh
Me: Ok, well, thank you John
John: Oh, thank you Mrs. Cooper. Have I satisfactorily resolved all of you issues?
Me: Yes, thank you John.

Except for where in the world is GMAC Customer Service. Hmmmm.

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It wasn’t an entirely sucky week, as I did have an appointment with Dr. Wonderful. Except I had meant to change it but forgot and remembered, while I was in the shower, 45 minutes before I was due there.

I couldn’t not go now.

As if I'd miss an opportunity to get more narcotics. Um, I mean as if I’d miss an opportunity to scope out his adorable self.

So I desperately raced to get ready and burst out the door, ten minutes late, with wet hair and panting like a dog. So off I trotted.

He looked wonderful, as usual. Treated me so nicely, as usual. Listened and totally got it about my pain as usual. And then proposed another surgery. As usual? Oy.

He is recommending a partial shoulder replacement to relieve the pain. So as I am writing this, I am watching a shoulder replacement surgery online on OR Live. So far my favorite parts have been the mallet, the drill and the buckets of blood being sucked out of the gaping wound.

Because I am shallow and immature, my true absolutely favorite part was the huge expanse of bare skin showing on the male patient exactly where my breast would be. Call me crazy, but I just don’t feel like having my boob hanging out in front of a bunch of strangers for several hours. Who knows what kind of bad habits it could pick up? hee hee That was just a little boob joke.

But honestly, would you want any of your naughty bits on display for everyone? While you weren’t even awake to hold it up or make excuses for it? Sigh.

So that was my week. In a tribute to Dr. W. I was going to treat you to the bloody, hammering, drilling shoulder video, but I decided to go in a different direction. No blood, lots of beard. lol



For e-mail readers:

http://www.youtube.com/watch?v=0_EFdod4YDo


Is it me or does that audience look kind of…anemic? Who doesn’t rock to ZZ Top?

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An update on Joe: still waiting for his surgery due to complications. I was very sympathetic. I said:

Oh for fuck sake!!!! This is ridiculous. Are they waiting for you to
die of old age so they don't have to operate at all?!?!


It is ruining my Angel of Mercy timetable because I have to have another surgery too, so I have limited time where I can stand by your bedside wringing my hands and looking like Ingrid Bergman in The Bells of St. Mary's.

I was really looking forward to that too. :( They are spoiling everything.



An update on the Behemoth: I love it!!

Thanks and No Thanks

While I have been in my funk and not keeping up my blog, I have actually been blessed with many things. Primarily, the blessings have taken the guise of people, so many people, who have expressed love and encouragement to me.

There have also been things that have been kind of crappy.

So I have made lists of each.

Thankful for:

My friend Christine. She has done things like bring me books when I was in the hospital and even my kids didn’t come visit me. She makes me laugh. She tells me I am wonderful. She introduced me to chocolate peanut butter pie. Oh wait, I am mad about that last one. But I still am grateful for Christine.

My sister, who I might go for weeks without seeing or speaking to, but we will start in mid-sentence where our last conversation ended. She knows. She gets it. I am glad she is my sister.

For Jane. Jane is a brilliant and hilarious writer from England. She writes a shriekingly funny blog http://www.janeturleydiaryofamadhousewife.blogspot.com/, which I love, and she writes for the BBC, which makes me dead jealous. Jane threatened me with [her] nudity if I didn’t start writing again. However, Jane dear, you forget about the picture of you standing behind the Prehistoric Woman picture board. I am so stupid, I didn’t realize it was a picture board and thought it was actually you, topless and dressed in furry rags. Right. In public, standing next to your husband and two of your children. Never mind how scary it is that I didn’t give it a second thought and considered you more brave than weird. My point is I already thought I had seen you naked. So that’s not much a threat now, is it Jane? You will have to come up with something better than that.

For chocolate peanut butter pie. Oh wait, I am mad about that one.

For my blog readers, who never give up on me and leave wonderful, warm, encouraging comments.

For my MS board friends, who never give up on me and say rude things that make me laugh my ass off.

For Cathy, who never gives up on me. Period.

For Trinity and my friends there, especially Michael, Bill and Dell, who never give up on me.

Dr. Wonderful, for not giving up on me, for actually sending a hand written note when I missed a follow-up appointment for my shoulder.

Dr. H, for not giving up on me even though I question everything.

Dr. B. for always letting me talk and acting like he is completely sympathetic even though he probably thinks I am a total Fruit Loop. For not giving up on me after all these years.

Hmmmm, I am sensing a pattern here.

Have I mentioned chocolate peanut butter pie?

So where was I…oh, right, the shitty stuff. It seems churlish to list bad things, but I will anyway, because that is just the kind of ingrate I am. lol (Oh, another thankful for: Barb, because she loves it when I say ‘churlish’.)

Not thankful for:

For a person dying last month from an infection related to the medicine I take to treat MS.

You know what? That’s enough not to be thankful for.

I’ll bet they weren’t too thrilled about it themselves.

IN CONCLUSION

Many, many truly humble thanks to those of you who have kept coming back even when I didn’t.