ruminations

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05322

As I waited for this page to open up and finally allow me to type, a million things flew through my brain.  How much I just wanted to sleep, how dedicated I am to blogging even when I have nothing to say — most importantly that I have nothing to say and no direction —what the actual point of this blind determination is in the grand scheme of things ….

I thought about our afternoon and how as humans, we all choose who we spend time with in odd ways — but shouldn’t we choose other people who bring us joy?  Who light up at the same things as us — good conversation, debate, laughter …. Or whatever floats each person’s boat.  Shouldn’t we spend time with people we trust?

If I am devoted to coming to this space every day (ahem, night) shouldn’t I at least have a hazy outline of an idea?  Because just coming here and verbally vomiting on the page doesn’t serve anyone very much.  Am I serving myself?  In any other way than proving I don’t always quit?  I’m not sure.  Am I serving anyone who actually commits to reading?  I’d say no, as my posts are as random as a moment in anyone’s brain – disjointed, short, long, rambling … but mostly seemingly pointless.

Anyway.  I couldn’t go to sleep without blogging.  And somehow, I feel as though that’s a win.

Xox, g

04322

A few infusions ago, a man came into our room to tout the benefits of reiki.  He explained that many people have found great relief through reiki.  And then he paused and looked conspiratorially at us both.  “And, I don’t want to — well, three nurses who were all trying to get pregnant had one session each and they all got pregnant!“. He smiled widely.  My eyes slid to the side as I smiled weakly.

I’m not sad that women who wanted children were able to have them.  I wasn’t sad that I don’t have children.  I even believe in reiki and think it’s fantastic that UPenn has a program for patients.  I was slightly annoyed by his pitch.

“Wrong audience,” I said to John as he left, leaning my head back to check my meds level.

Here’s my thing – we are all living on this Earth for our one life.  Even if we get more, even if reincarnation is a real thing and we keep coming back again and again we won’t know because very few people remember their former lives and anyway, that’s beside the point right now.  We get this life.  This one, beautiful, precious, difficult, challenging, confusing life.  What a cool miracle.

And so many of us just … live in a lane and a belief system and impose it on everyone else as though it’s the rightest of right ways to exist.  As though I should want children, don’t I want children, isn’t it so sad that I don’t have children?

Not really.

I mean, for me, not really.  I don’t hate kids – in fact, I adore my goddaughter and her brother and so many little humans that I’ve known across the years.  But I don’t want my own.  And even when – momentarily – I did think having kids would be excellent, I was never devastated when it didn’t happen.

This is just one example of society telling me – both loudly and subtly – what I should be doing and wanting in my one precious life.  And I’m kind of over it.

I’d be fairly narcissistic to believe that my legacy will live on forever after I’m gone.  So why shouldn’t I just embrace this time, this ride, and really enjoy as much of it as I can?

I think about this a lot when I’m hooked up to meds.  Because every four weeks we schlep into the city so I can have drugs pumped into my veins in order to be able to live my one precious life the best way I can.

And that’s kind of what I want to do.

Xox, g

 

28222

It‘s funny to me that we are finished with two months of the ‘new’ year.

Two months.  One sixth.  Not an insignificant amount of time.

It makes me think about how we each choose to spend our time.  I was reading today about the wonder that comes back into your life after quitting drinking.  The wonder and excitement and fun of experiencing life – the things we all found interesting as children become interesting again.  Life seems miraculous and wondrous and beautiful and amazing and incredible.  Because we’re paying attention.  Because we aren’t clouding our thoughts with alcohol – numbing the pain and running from the truth.  We are, instead, marinating in it all.

It’s been nearly two years of a pandemic.  Several days ago the first ground war in nearly eighty years began in Europe.  Life feels heavy and very difficult to navigate and yet we MUST still exist and live.

Time is a funny, trippy thing.

Xo, g

26222

I feel like the car that is sputtering on the side of the road – sputtering but not turning over.  Still trying, but too worn out to do much more than flail intermittently.

I’m not sure what triggered it but today I had a true moment of utter despair – a moment of terror and fear and defeat and desperation.  I am tired.  I cannot seem to get “un” tired no matter what I do.  And the fear within me to be viewed as lazy or privileged drives me every day to push myself past the capacity of my body.

Fear of not being able to walk.  Despair at becoming a person like my in-laws: completely uncaring about my environment or my health or the people I’m surrounded by.  Defeat at not being able to keep going, to do the things, live a normal life.  Terror at being directionless and lost forever.

What is rest?  What is good sleep?  What are the things I can do and keep existing without sputtering to a stop?

I am so tired.

Xox, g

25222

Something husby and I talked about today – but we talk about often in different ways – is how we are each given one life.  No do-overs, no seconds, no switching out. Just one.

You can think of it as a gift from God or biology or just the way things work.  But we each get one.  And when we die there isn’t a terribly long span of time before we are forgotten.  (Not to be morbid or tragic or sad – but unless you’re George Washington or Socrates, you probably won’t be remembered hundreds of years later).

That being said, how we each choose to spend the time we are given – which is not in any way guaranteed – should (hopefully) take on new meaning.  Why spend time doing hateful things, or terrible things, or being utterly miserable in life?  Why choose to spend your precious time that way?

My mother was sometimes referred to as a Pollyanna.  This is in reference to an old Disney movie of the same name about a young girl who was positive in the face of some devastating odds.  She always found the bright side.  That was my mother – always sunny and happy and enjoying her time.

I know it wasn’t always like that.  There were times when it got very dark for her.  I was young (and some of it happened before I was even thought of, let alone born) but I remember those times.  I also think my mother – who lost her first husband at the tender age of twenty-two – understood the profundity of the fleeting nature of life.

I’ve been thinking about it today because there is a war going on in our country against human rights.  And a war on European soil that America cannot get involved in for threat of nuclear war.  And these people – those perpetrating the erasure of human rights and the invasion of another people’s home are CHOOSING to spend their limited time on this Earth pursuing these goals.  For what?  To affect a generation or two of humans coming after — to create a world of hate and fear and angst and terror?  That’s a choice.  By another human being.

It weighs on me, it makes me profoundly sad.  As I feel the privilege of my life, it’s safety and comfort.

Xoxo, g

18222

 

I read an article the other day and this quote appeared.  It’s been stuck in my head ever since – about how the ‘rules’ are set up, who makes them and why we follow them.

Why weren’t we taught to fear the humans burning other humans alive?

 

Xox, g

17222

Life is not fair.  It isn’t even kind very often.  We work hard for those things with our humanity.  But it is a human thing, I believe.  The idea of fair and kind.

We all have choices to make every single day.  How we live, how we exist in this life we’ve been given.  How we deal with the hand we’ve been dealt.  Dealing with people who make incomprehensible decisions is a challenging place to be.  It is even more soul-crushing when it is breaking the heart of the person who matters most to you.

I’m in a run of bad days.  Bad MS days, bad family days … just bad days.  I know that the bad will not continue forever.  Life ebbs and flows.  We are ebbing right now, pretty hard, and it feels awful.  But eventually the tides will change.

Eventually the tides will change.  I believe that.

Xox, g

16222

Life has been anything but easy lately.  Not just my father-in-law’s health, but my own and how to manage my disease while being supportive of my husband as he navigates the unknown waters of post-surgery delirium.

This moment is the other shoe dropping.

Things happening in clusters – first a run of really good things and now a run of really challenging things.  Moments that remind me again and again how far I have to go on my journey of self-development and self-discovery.

How do you know the line that differentiates self-care from selfishness?  How do you give without giving up everything … your self-worth, your mental health, your personal peace?  I wonder these things as I sit in my headache purgatory.  As I order groceries online to be delivered.  As my legs buckle beneath me, giving up or giving in …. On the verge of giving out.

How do I walk this tight rope of personal preservation as my husband transitions to permanent care-taker?  Is it even possible?

This is the other shoe dropping.  Loudly.  With a definitive thud.

Xox, g

11222

I’ve been thinking a lot lately about personal responsibility.

The idea that not only do we get to choose how we show up in the world, but we also get to choose how we want to live.  Unless everything is predetermined.  But that’s a whole different conversation.

I spend most of my days existing in the world in a way that does a couple things – allows me to be as comfortable as possible (health-wise, in our home, etc) and allows me to fall asleep at night feeling at peace with who I am, what I did/said/acted upon/put out into the world.  I’ve spent so much time in the past few years reading philosophy and religion (and everything in between and around) and there is obviously no ‘right’ or ‘wrong’ way to be.

Every time I start to get frustrated (for various reasons, but currently due to the opposing positions that my in-laws and I take on pretty much everything) I remind myself that all the things I’m wondering — how do they sleep, how do they feel okay with the way they behaved, etc etc – is because they frame their lives, their interactions and their opinions within a completely different framework than I do.  Like most of us (myself included) they are the heroes of their story.  So even though they are not heroes to me —and from their point of view, I’m the villain- their belief would be that they are behaving in the correct way and everyone else is incorrect/rude/wrong.  So we are stuck at odds, believing totally different things but also NOT believing totally different things (morals, etc)  just framing them and interpreting them completely differently.

I don’t know that they spend any time considering my position in the same way I consider theirs but …. perhaps they do.  I just don’t know.

I find my heart full of angst and my brain full of frustrated questions about how they can possibly put themselves into the world in the ways in which they do, only to circle around to the fact that they do no believe they are doing anything harmful, but rather that harm is being done to them.

I could not imagine myself not taking responsibility for myself, for my own personal well-being, for my safety and for my understanding.  I just … I don’t understand.  It makes me work hard to not only comprehend, but have compassion.

Xox, g

10222

Today was one of those days that ended up feeling like a hangover from the past few days.

I think adrenaline got me through most of yesterday – just the uncertainty and having to be ‘on’ all the time.  And then today dawned and my body told me – quite firmly – not today.  

Which I completely ignored because I had plans.

It ended up being a good day – good lunch, good conversation.  I even had a decent workout (until the last five minutes when my legs were just d-o-n-e).

As I was falling asleep I remembered I hadn’t blogged. And I knew I couldn’t fall asleep having remembered.  So up I got, eyes full of ointment, hands in gloves and slathered with Aquafor.  It made me think of a conversation I had yesterday about my skin.

I’ve always been kind of a skincare nut.  My mother was a nut, my grandmother was a nut, my aunt is a nut.  It’s a nighttime (day time/all the time) ritual that I find comfort in, relaxation.  But as I told my mother-in-law yesterday, my skin isn’t just a result of skincare.  And it doesn’t happen overnight.

Most things in life – like my skin, or my legs, or my hair or anything really – are the result of putting in the time and working toward a goal (or a standard, depending on what it is).  My skin is about what I eat, how much water I drink, how much sleep I get, how I deal with stress, etc etc.  And people can use all the same products I use but their skin won’t look like mine — because it isn’t just the moisturizers and the exfoliators and the serums.  It’s everything.  Consistently.

Like my eye drops to keep my eyes lubricated.   And gloves and aquafor to keep my hands moisturized.  It’s about consistency.  Not losing sight of the reasons for doing it in the first place.

I’m rambling because I’m tired but I think there’s a point in there somewhere.

Off to get my eight hours.

Xox, g