Monthly Archives: April 2013

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My Me List

I have collected many tools, ideas and mantras over these past many months.  Things to live by, internal post-it notes to help me out, lessons and insights.  Life has been so complicated and moved so quickly, that it seems I’ve barely had time to reach a conclusion or insight before the next layer peals back or the next challenge is upon me.  I haven’t had a chance to get these helpful things incorporated into my thinking.  And, when I stumble upon a rabbit hole, I don’t have them at my fingertips yet to help me out.  SO…in an effort to keep them around, I’m trying some good, old-fashioned memory techniques, including this blog…write it out.

Here’s my running list:

  • Relax
  • Reinvest
  • Enjoy love, life and friendship
  • Be blessed.  Be lucky.
  • Feel sexy.
  • Feel health.
  • Allow room.
  • Allow fluctuation.
  • Trust yourself.
  • Remember where you have come from.
  • Look forward to what you want.
  • Enjoy our home (dogs included!!)
  • Enjoy my work.
  • Use my personality.
  • Dont be afraid of my strengths.
  • Admit and be gentle with my weaknesses.
  • Lessen the intensity sometimes.
  • Follow my instincts (sometimes?)
  • Wonder!!!!
  • Choose my risks.
  • Choose my battles.
  • Write.
  • Sing.
  • Go dancing.
  • Cook.
  • Follow momentum.
  • Protect healing.
  • Go with what works.
  • Listen to my body.
  • Don’t trace everything back.
  • Don’t analyze everything!
  • Find breath.
  • Calm the inner dialogue.
  • Pause.
  • Let feelings happen.
  • Let thoughts and feeling pass through.
  • Live in the middle.
  • Take space for myself.
  • Give space to others.
  • Trust time.
  • Don’t give away every thought.  Keep some with just me for awhile.
  • Remember that I am the only one who will ever fully know me.
  • Lift my face – in any weather.
  • Keep love simple.

I’ll let you know when I have more additions.  In the meantime…surely there are things on this list to help any given moment.  I think I need to copy it (maybe by hand!!) several times and stash it in various places.  Yes, I think I shall become a scribe for a little while.

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A Gift of a Day

(Written starting Friday, April 19th)

I didn’t know that today would be a big day.  I didn’t expect to be handed an outcome that both assures and explains and, because it does, allows me to let go in big, big ways!  I thought I would receive information…not this gift!!!  Here’s the scoop:

I had my follow-up with Neurology today.  The last follow-up with the last specialist – at least in this first big round of exploration.  The only specialist that had concerns to pursue and in the field of specialty that I considered the most intimidating.  We did three procedures after the initial consultation – an MRI of my brain, an in-office EEG and a 48-hr EEG.  The 48-hour EEG was supposed to happen only if we didn’t find anything on the in-office one, but then it happened because they did find some unusual activity and needed to get more information.

SO…Both the MRI and the 48-hr EEG were clean and boring – good thing!  Between these two, we rule out all the scary things – tumors, seizures, strokes, MS, etc.  The in-office EEG does confirm that I am “extra sparky” – or, more technically, I have unexplained excess impulses happening at times in my brain – primarily the left hemisphere.  The 48-hr EEG needed to confirm that the extra sparks were not indicative of seizure activity and did confirm that they clearly aren’t.  They know this particularly because there was no evidence of those extra impulses when I was sleeping, which is when the brain is the most vulnerable to them.  So, yes…I have some unusual brain activity, but we are not worried about this and it’s not overly rare.  Very similar outcome to the Echocardiogram that found several extra heart beats, but not enough to be at all worried about.  My joke to my UUCR choir last night – I have heart and brain to spare…now if I can just find extra courage I’ll be able to do the Wizard of Oz as a one-woman show!

It’s at this point that every other specialist has said, “sorry, I can’t help you.  There’s nothing here to explore.”  Which has been good news, but not satisfying news – because these symptoms and episodes were happening and worsening at times and that just didn’t jive!

I have been preparing myself to hear this same thing from neurology and trying to get to a place where I could accept that all that has happened was both unexplainable and perhaps entirely the effects of stress.  That was going to be a tough pill to swallow, though, given that this all started with a very physical event and that the symptoms have seemed to progressively worsen even though my stress level was improving and my management of it getting better.  Turns out that the neurologist (Dr. Ruben Cintron, who you’ll hear more about!) had a sequence of possibilities in mind from the initial consultation and needed to go through this ruling out process first.  Having done that, there are a couple different possible and plausible explanations that can account for pretty much everything that has happened/is happening.  Not another brick wall!

First, some new language (for me, anyway) – he believes that this is an “insult-related” condition.  Think of insult like injury – but it doesn’t have to be a physical trauma…it’s a negative event.  That means it’s not a condition or disease that is progressive or systemic.  He described two events that he thinks have had lasting effects and then agreed that stress has likely been a 3rd event that has exacerbated the other two.  So…in order…

Over April to October of 2011 I lost about 60 lbs on the Medifast diet.  This is considered both massive and rapid.  It was a fully supervised, condoned and balanced program, but that’s not really here nor there now.  Dr. Cintron considers this “insult number one” – massive, rapid weight loss will change body chemistry and stamina and physicality in big ways and will take quite a period of adjustment.  It’s also very likely that I developed some deficiencies.  We’ve been trying to prove that since I first went into my primary care with significant dizziness in October of 2011, but Dr. Cintron says that it’s not surprising that we wouldn’t find evidence of them.  Many deficiencies won’t show up in bloodwork since the bigger issue is whether the nutrients are getting from the blood into the brain – ya know, absorption.  You will recall that, having had a gastric bypass surgery in 2006, I already don’t absorb things normally.  My physicians and nutritionists knew this, but it’s just so possible that this plays a factor as well.  Even if it didn’t, the Medifast weight loss alone left my body in a more vulnerable state with a long adjustment period and, likely, with deficiencies that caused the original dizziness.

As you know, the weight loss itself uncovered significant body and emotional issues and sent me down a stressful, psychological spiral.  Stress like I’ve never experienced before.  We can be sure that this didn’t help anything and further compromised my physical state.

The second distinct insult was my reconstructive surgery last June and, more specifically, 11 hours under anesthesia.  This was already a potential game-changer for my body chemistry and added on top of the weakened state, can easily explain the additional symptoms that started to happen after that surgery – sudden fatigue, mental fogginess and, later on, the near-fainting spells.  I know I’ve heard that the affects of anesthesia can last for months – even years.  Well, that’s true.  And it means that the “damage” that was done to me could not only take 12-18 months to heal, but could have been progressive over these past many months since the surgery – getting worse before it gets better.

So, in short – a one-two punch of a weakened physical and chemical state from weight loss and anesthesia exacerbated by stress.  That’s explanation number one and could incorporate every single symptom that I have experienced.  Treatment is time, nourishment, stress management and minimizing exposure to anesthesia especially out to 18 months past my surgery last summer.  Prognosis is just fine – we should expect improvement and we have ruled out any irreversible damage.

Then, there is a possible other condition/complicator.  Many of my symptoms and a more recent one that I hadn’t written about yet (some visual disturbance – clear, jagged shapes that kind of crystallize my vision – has happened twice this past week…remember I’ve been very sick and was very tired both times) – are classic symptoms of  acephalgic and ocular migraines…in other words….migraines without the headaches!!

Dr. Cintron says it’s possible that my body has decided to explore some migraine activity here in my early 40s.  Doesn’t mean that I’ll have migraine headaches or worsening symptoms or consistent symptoms.  I might experience that or I might have some more of what I’ve experienced already or I might not – we’ll have to monitor some of that.  He would be interested in some neuro-psychological testing, but not right now.  He believes that I’ll feel better over the next few months and would wait until then unless I didn’t feel better and we thought I had hit a plateau.

So…SO!!!!  This means many things!

  • It means that we have BOTH answers and assurance that “not much” is wrong.
  • It means that neurology is the specialty to stay with AND it’s not a big, bad specialty AND I happen to have an amazing neurology practice that I’m working with.  Timeout for a plug:  Dr. Ruben Cintron and his practice, Neuroscience Consultants in Reston is about the most amazing medical experience that I have ever had.  Every single person I’ve worked with has been fantastic.  So kind, so patient, so knowledgable and willing to spend time and really dig in.  I couldn’t be more impressed or more grateful!
  • It means that we can seriously lower the freak-out factor when something happens.  I can respond (slow down, rest, eat, something) but we don’t have to panic about what’s happening and what it means.
  • It means that I have answers that make sense, which allows me to both stop this exhausting exploration and lay to rest many things about the last many, many months.
  • This means that I can concentrate on getting better by investing in what’s next, figuring out what relaxing and balancing energy means to me (which, we know has been an ongoing process – but this enlightens it some), deciding what is good, normal nourishment for me, and settling in for awhile.
  • This means that “Sparky” is an apropos, medically condoned new nickname!

What a huge day!!  What a huge gift!!  I’m not totally healthy, but I’m not in danger and I’m recovering.  These physical and emotional stresses are very real and very much a part of everything that has happened, but just a part.  It’s been a complicated time.  Had you gathered that?

I have many other things that I’m thinking about now and I’ve been so in my head while I’ve been out sick, but we’ll leave that for another day.  For now, I want to just really appreciate and spend time with this gift that I’ve been given.  Soak it in and look at it from different angles and relish the freeing up of stress and worry that has been hanging over me.  I see that so clearly now that it is lifting!!

I invite you to lift your worry for me too and accept this gift.  Let’s unfurl our brows and put a hold on the diagnostic research.  Not because we’re desperate for this answer but because we’ve been given answer enough to make sense – pretty much without exception!  I feel that I can trust this doctor and this practice and they and I have our eyes open.  If I don’t show improvement or if things shift – we are so aware now and have good resources around us!  That’s definitely a bridge to cross only if we come to it.

And, besides, I have enough to do between figuring out this “relax” thing and jumping back into my creative work!  That’s where I want to focus my time and energy.  And that’s what I want to engage with my community on.  That and just being here.  With you.  Or maybe just being.  That will be hard work for me!!

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Between Everything and Nothing

This blog is definitely one of those where I need to write my way into wherever it is that I need to go.  It’s been a long, long few weeks – mostly in radio silence here, I know!  Before winging off to the Austro-Hungarian Empire, I wrote a lot about being present – staying in the here and now.  And, as I went into and through my trip, I talked about my feelings of being new and small in the world.  I came back and felt wonderful.  Ready to be wherever I was and pour myself into a “new norm.” Ready to balance.  Ready to enjoy.  Ready to engage -with home and family, with friends, with choirs, with my creative work.  ENGAGE!

I had less than a week of that and was just warming up to it all…then…sick.  Really sick!  Flu turned into respiratory infection that put me totally out of commission for more than two weeks now.  At first, I just accepted it.  Had no choice physically – it was very clear that I wasn’t going to be able to do anything.  I just made back-up arrangements for the choirs and cancelled everything else.  Nicole caught it a few days after me and, for the first weekend at home, we had this odd mix of being miserably sick and really enjoying being down and out together.  Then came the second week – also clear that I had to keep canceling everything.  But now I started to turn in on myself and fight to keep my “life is good” perspective that I’ve spent so much time uncovering!

I’ve been struggling with a concept that I have only been able to grasp a couple of times.  As I’ve been out sick – and, in part, even as I’ve gone through these many months of not being the physical being that I am used to – I have had to reconcile with not being capable.  Sometimes, that translates to me that what has made me “special” recently is the struggle that I am going through.  It used to be, I believed, that what made me special was my energy and my ability.  One is all negative and the other all positive.  Those cursed black and whites.

In the last two weeks, I have been ably replaced at my jobs and yet reassured that I was missed and deeply cared for.  Special AND replaceable.

Over the last 18 months, I have learned in HUGE ways both how loved and treasured I am AND how fallible and imperfect I am.  And how this is an utterly normal experience.  Even normal in its abnormalcy.  People everywhere have challenges and complications.  People make mistakes.  People have unexplained things happen to their bodies.  People have ups and downs.  Good moments and regrettable moments.  And people do extraordinary things.  Things that have impact and touch others.  And there are billions of us.  Here and now, not to mention all that have gone before and all that come after.

I go back to the philosophical concept of wonderment.  Getting that overwhelming perspective on reality – how amazing it is and each of us in it.  How small and fleeting each moment is and, indeed, our whole lives.  We and our actions are just specks of dust.  (That’s the “nothing” way to look at it.) And each speck is also incredibly unique, impactful, capable of meaningful and hugely worthwhile lives.

It seems to me, right now, that I used to live an “everything” life.  A golden child.  So confident.  I could make good with everything I set my mind to and, as I’ve mentioned, if I couldn’t, then I didn’t set my mind to it and it just slipped out of sight.  I really never felt that I lived arrogantly, but it sure seems that way in hindsight.  Maybe the better descriptor is ignorantly.  We don’t know what we don’t know until we know what we didn’t know. right?  I’m pretty sure the common term for that is “growing up.”

Now…in my new reality…I think that embracing the middle is the most genuine way to live.  Following strengths AND acknowledging weaknesses.  Having highs AND lows, special days and normal days.  But for me to reach this middle, I’m first experiencing a sense of loss from the feeling that everything is special and I have it all figured out.  It’s a loss of confidence.  As I’ve been flailing about, and, intensely in these two weeks of isolation, as I’ve been even more incapable – I’ve been desperate for that sense of leading a special life.  Having each interaction with every person be extraordinary and meaningful.  Unwilling to accept everyday, “normal” moments, let alone sick moment!  When those normal days are happening (and, as I’m sure you all know better than me – they happen with GREAT frequency!!), they have fed my feeling of loss and depression.

Where I want to get to – what my blog about expecting reality was trying to crack into – is that living in the middle allows for normal and special to coexist.  Low moments help us treasure the highs.  Normal moments are both places to settle and places to feel grateful for the normal that I have to settle into.  Not moments to chafe against.  Moments to relax into and breathe easy.  I have been filling them with worry and trying.  Even this crazy “trying to relax!”

Living an “everything” life is exhausting.  It’s unrealistic and, eventually, it would sap the life right out of me!  It’s also something that I think we humans try to do when we are younger.  Living a “nothing” life is a rabbit hole that we can create for ourselves.  It’s only true if we live our lives as though they, and us, are meaningless and small.  Between everything and nothing.  Well, that’s real life – for everyone!  Seeing that, embracing it and really, consciously living it – that’s the trick.  That’s where all the meaning lies.

I’ve been on a kick of real-life movies lately.  And, not surprisingly, quite cynical and uninterested in fantasy stories and games.  Movies where you see the decisions and the people and the moments and how they come together in each unique situation – far more fascinating than fiction!  “Lincoln” is a great example.  Seeing the real man behind the speeches.  And I just finished watching “A Late Quartet” – which I bawled at in the end.  “The Perks of Being a Wallflower,”  “Milk,”  “The Pursuit of Happyness” – stories of real people and how they navigate the ups and downs of real lives.  All of a sudden, these are the stories that I want to watch.  And this is the story that I want to live.

Once again, though, I have to peel back more layers to get there.  Get more perspective.  Make more adjustments.  Perhaps I should consider that this is also commonly known as “growing” and it’s something that I should consider as normal life?  Maybe when we stop adjusting, that’s when life ends?  Hmm….I’ll have to think about that.  I’m sure it’s not as exhausting as it sounds right now!