The Christmas Joy

So, Christmas happened.  This is the picture that my wife and I took before Christmas:

TheoWithPresents

The Maine Coon in the picture is Theo (short for Majesticoon Prometheus), and he simply could not have been more excited about the gifts (mostly the boxes, it must be confessed) that we accumulated before the event.  His sparkling anticipation was NOTHING compared to mine, however.  We deliberately saved up in order to be able to give the kinds of presents we wanted to give this year…and do you know what?  Between that and being able to spend 24 hours with the closest of family, THAT is what I remember, and every time I do, I find myself sporting the biggest and happiest grin that my face has seen in a long time.  And it’s real; the joy I experienced for Christmas has stayed with me and I expect it will do so for very long time.

Did my epilepsy rear its ugly head at some point during the 24 hour+ festivities?  It did.  But I was surrounded by people who love me, and it is definitely NOT one of the many, many wonderful things that I will remember about the event.

In the end, no matter how much money was spent, the ‘quality’ of the gifts that were exchanged, mattered not at all.  We decided to spend the night with Mum, Dad and our wonderful brother Mike on Christmas Eve so that we could have a ‘proper’ Christmas morning, regardless of the fact that we’re all grown theoretically long past the unique quality that only Christmas morning can bring.  In the end, our ages didn’t matter and we woke up on Christmas morning just as excited as I ever remember being as a child.

We exchanged presents and visited wonderful and loving grandparents on Christmas Day.  But the joy that has been instilled in my heart from the entire experience has transcended any individual act.  Even at the ‘ripe old age’ of 43, I genuinely experienced the excitement and joy of a youngster.  An unexpected benefit of my age is the fact that the elation and joy haven’t dissipated during the time that has followed.  I’m still sporting that very real and silly grin from the holiday, and I know that I will be for quite some time to c0me.  Merry belated Christmas and Happy Holidays to everyone!

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Isn’t Life Funny?

I set up this blog with every intention of posting positive messages to those suffering with epilepsy as well as a variety of debilitating/degenerative illnesses, but it’s become a journal nonetheless about my own day-to-day experience.  And those aren’t only the hunky-dory kind.

Two days ago, I had an appointment with a dentist.  In itself, not a big thing, right?  For me, it was the first time I’d seen a dentist in over 20 years and I knew in my deepest heart of hearts that I’d NOT taken care of my teeth in the way that a dentist would approve.  I’d fully steeled myself for the hole-ripping that was to come.

Life being what it is, do you know what happened?  The dentist was absolutely nothing but lovely and the entire experience was a completely positive one.  It was the kind of thing that if I were 20 (ish) years younger and completely familiar with modern technology, I’d be all over Snapcat, Instagrannie, Photobomb, Fatetime, Twitter, etc, saying how wonderful the experience had been.  (One moment, please, there is a cat demanding my attention on my lap.)

(This one, in fact:  Pyggie In Kitchen

(As you can see from his sheer size, when he decides to cuddle, my opinion is less important than his. One moment please.)

To make a long story short, I attended my dentist appointment to have two fillings performed and the entire experience, from the professional side of things, was a complete success.

(Okay, we’re good, he’s moved on to the chair next to me in order to supervise.)

As an American who has had nominal experience with dentistry in general (a genetic blessing, nothing for which I can take credit), and seeing a dentist in a ‘foreign’ country for the first time, it’s safe to say that I had zero idea what to expect.

Having said that, I would never in a million years have told you how totally and completely lovely my dentist would be and how comfortable they actively worked to make the appointment for me.  If I hadn’t decided to ‘put on a show,’ I’d be sitting here giving nothing but rave reviews to entire experience.

But of course, I did.  The moment the gas and air filled my lungs, I had an absence seizure which changed the nature of the whole day…at least in my books.

(And can I just say at this juncture – at this point in my life, I’d never experienced ‘gas and air,’ and had been told by *everyone* that it’s actually a lovely practice, a legal high, something which seems to be universally agreed-upon as being a positively euphoric moment.  As a non-drug-user, I’d secretly really looked forward to it.  And wouldn’t you know it?  The moment it infiltrated my bloodstream, I seized and forgot the whole damned experience.  To this day, I can’t tell you what gas and air is like, dammit.)

To be completely fair, the seizure was ‘a small one,’ and didn’t keep the dentist from finishing my fillings.  I walked out with exactly what I’d come in for.

It was later, after I’d recovered from both the seizure and the dental work, that I collapsed in my wife’s arms in a weepy mess.  Is this how it’s going to be for the rest of my life?  I schedule a perfectly normal event and can’t make it through without seizing?  Regardless of the fact that this particular seizure didn’t interrupt our goal, I was in floods of tears at the very notion that this stupid disease may very well colour everything I look forward to for the rest of my life.  It was a low moment, and I allowed myself an hour or so of complete self-pity at the unfairness of it all.

Oddly, considering how much I talk about it, that isn’t what I wanted to share with you today.

The single most important memory I have of the entire experience is my beautiful wife, sitting on the couch holding my sobbing, gibbering, self-loathing mess of a self, reminding me that no matter what the future has in store for us, she loves me and will always be there for me.  No matter how low I get, emotionally or medically, she’s there for the long haul.

And do you know what?  I believe her.  To paraphrase one of my favourite books, it may be an every-day sort of miracle, but it is a miracle nonetheless.

In spite of everything, I may very well be one of the luckiest, most blessed people in the entire world.

Holiday Events and Fear

Do any of you fear attending holiday events because of your illness/situation?  I do.  In fact, to be bold, and incredibly rare for me, I am terrified to attend functions of any nature because of the possibility that I may break out into a full grand mal seizure at any time, sometimes without any warning whatsoever.

So what do we do about this?  Again, in the spirit of perfect honesty, I spend most of my life in my lovely apartment.  Yes, I do go out to celebrate events and to see my family and such, but…yeah, I admit it.  I choose to stay inside my home where I know it’s safe to be totally and completely embarrassing by the nature of my seizures.

What do I do about this?  Support groups?  This just seems like a group of unknown people in front of whom I might embarrass myself again.  Even basic shopping presents the same basic fears.  I do not consider myself an agoraphobic, but I seem over the years to be displaying the exact qualifications of one.  (At this juncture, I would like to be VERY careful not to confuse my symptoms with those with genuine agoraphobia.  I could never understand their condition, and I suspect the feeling is mutual.)

My wife is a quiet, conservative individual, but even she is beginning to feel the strain.  Natural, I suppose after almost seven years of this behaviour of mine.  Again, what should I do?

Just be clear, my seizures strike with and without warning, ranging from petit mals (where I simply freeze, drool and become completely unaware of my surroundings, followed by extreme exhaustion, to grand mals, during which I exhibit the classic symptoms of the known seizure – full-body (tonic-clonic) gestures that defy the laws of which my normal body is capable.  I have broken my own bones, given myself whopping bruises, often across my face.  More than that, however, having a grand mal in public has embarrassed me more than any other event in my known recent history.  I have nightmares about it.  Because it’s not just myself that I’m thrusting into the spotlight, it’s everyone around me: my wife and my wonderful family, first and foremost.

They, of course, handle it like champions.  My champions, to be specific.  They actively put themselves in harm’s way and I shudder to think what they would do if someone were to impugn my inadvertent behaviour.  To continue the cycle, I want to protect THEM from having to do any of those things.

Again, what do I do?  Yes, I’m seeing a neuro and chasing down the possibility that meds could change the course of my seizing future.  To be honest (and probably self-preservationist), I don’t see a future in which gallons of pills will solve the problem.  Perhaps that’s part of the problem?  Perhaps I need to adopt a more positive attitude towards the future?  There is no question that I want to spend as much time with my wife and family as possible; perhaps I need to spend some time re-evaluating my planned course.

Any advice at all would be appreciated, both from seizure sufferers or anyone else.  I *do* want to get better.  I DON’T want to be ‘the girl who might ruin any family event.’  Just the thought mortifies me.

Christmas time is here, regardless of twitchiness.

So, the last time I posted here, I damned near died from a massive grand mal.  Before the incident, I remember my wife saying ‘No, we really shouldn’t contact the EMTs because seizures are ‘normal’ for you.’  My very next memory includes trying to explain to the EMTs why they were there and why my tongue seemed to not work very well.   (Apparently, during the spectacular grand mal that led to their summons, I had bitten through and spit out a significant portion of my tongue at my wife.) Sexy.

But that was weeks ago now, and I’ve recovered almost completely from that Emergency Room visit and humiliating subsequent babying.  Now we’re back to normal housewifing, which is now including holiday activities!

I have to say, I couldn’t be more excited.  There are 30+ presents wrapped and waiting for The Day to be opened and shared in love and it’s been miraculously easy to get lost in those feelings.  Did I ever ONCE believe that I would describe myself as ‘the lucky girl’ again? Given my history?  That would be a hell no.

But it happened anyway.  I found the love of my life, she gives me everything that I could possibly need, want and more, and now she is giving me a Christmas that I’ll never forget.  She doesn’t care that a couple of our trips out to shop for Christmas presents have been marred by a seizure or two.  She gently carried me home, set me in front of my computer, and told me to order presents I wanted to give via Amazon and others.

And now I wake up every day to stacks and stacks of brilliantly wrapped Christmas presents that I can’t WAIT to give to various people, and that’s the positive attitude with which my entire day starts.  No matter how many stupid big/little seizures I may have in the meantime, that stack of presents is there anyway.  Some of them are for me, some of them are picked out by me, and most of them we picked out together for our beloved family.  The entire pile represents a kind of joy that I never thought I’d experience again in my lifetime.

I sit here, writing at this silly blog, and tell you that IT DOES GET BETTER.  This holiday season will be the best yet, and ultimately it has nothing to do with how many presents are exchanged.  It has everything to do with how much love and vulnerability my wife and I are willing to show this holiday season.  And we’re gonna show it all.  We talked about it a great deal, and decided that we have nothing to lose – certainly not each other.

How many times in your life do you get to say that to yourself and/or your partner?  If you ever do…go for it.  Just close your eyes and go for it.  Then sit back and let the joy pour over you in waves as you make yourself and everyone around you experience joy in their own repeatable waves of your own making.

And while all of this joy is filling you, your partner and everyone around, never forget to thank God (or whomever you thank for your blessedness), and know that this is just the beginning.

And then, occasionally, we all have an off day.

Either Monday, November 2nd or Sunday, the first, all hell broke loose;  All of  my muscles decided that they were stay in a stent state of extreme flexion, with very few exceptions.  The result was incredibly painful and to this day ,I am overcome with tears at the thought of losing some complete and control like that and the fact that I am absolutely powerless from it ever happening again.

The specifics: my wife and I were sitting at the computers, working on some errands, when suddenly I arose my chair for no good reason and groaned, deeply. I then lauching myself towards the computer screens.  Luckily, my wife was sat right beside me and was able to intercept me before I could make violent contact with the furniture.  With difficulty, she managed to get  me another the floor.

For some reason, this seizure was quite different from the other, although I will have to parrot her words to describe why.  From what little I understand, not only did it last longer than a normal episode, but also appeared to react to absolutely not anything.  Tweet called my name, pinched me, moved quickly within my line of sight, etc.  Nothing made any difference whatever.

Then, the kicker happened: I rolled over on my back of my own volition, let out a huge gurgling sigh, both of my pupils blew and I stopped breathing.

Within fifteen minutes, no less than four emergency personnel showed up and immediately transferred me to the vehicle waiting outside of our flat.   The did perform some preliminary tests while still in my apartment, all of which seemed to indicate that more care was required.  Thus, after a lightening-fast phone call, Tweet was compelled to follow the ambulance the entire forty minute drive to Bath Royal United Hospital at speed.

*This is obviously part 1 of a larger story, but I am trying to write bits and pieces in between healing up from this truly horrific incident.  Thank you so much, those of  you who choose to read this.  It’s been 20 since I’ve been able to discuss this issue so frankly, and I genuinely admire those of you who take the time to read it.  Thank  you.

What IS a Seizure, Anyway?

First of all, let me say that I am NOT a medical doctor.  My mother and grandmother both were, so I was raised to sound like one unintentionally sometimes, but I assure you – I am not.  So please keep that in mind.  This post is entirely about my own experiences with epileptic seizures.

From what I’ve been told by numerous neurologists, no two people seize in exactly the same way, so it’s incredibly difficult to quantify seizures.  Also, it’s important to remember that people with seizures were simply put into loony bins as early as the 1970s in the United States, here in the UK, and elsewhere.  Although yes, there has been a great deal of research done on this disease, it’s always important to bear in mind that in the long run, it’s all started relatively recently.

Right.  Please bear with me during this, because this is exactly what I have had difficulty sharing with people since my seizures began, almost 20 years ago.  I seize a lot.  Many, if not most, epileptics may have seizures a few times a year.  I have them once or twice a week, and occasionally I have a cluster of 3-5 grand mals in a row.

So what does that mean exactly?  Okay – like I mentioned earlier, please remember – this is ONLY my experience with epileptic seizures.

Sometimes I have a warning aura.  To me, the aura manifests as a sort of glowing halo that suddenly appears around everything and I start feeling dizzy.  Sometimes, I just start feeling ‘really not right,’ although I can’t put anything else into words.  Sometimes, I lose the power of speech altogether several seconds before the seizure itself hits.  All of these warnings have taught me to make myself prostrate as soon as possible and to get my head away from anything dangerous.

When the seizure itself starts, I stop breathing.  This is a common symptom of a seizure – most people stop breathing completely during the course of the seizure itself, which is what makes long seizures so dangerous.  My seizures typically last less than 2 minutes, for which I am exceedingly grateful.  As pale as I am, that’s more than enough to turn my lips, nails and face rather blue.

With a grand mal seizure, the most frequent type I experience, I will sometimes exert a loud vocal moan first, which is my body expelling all of the air in my lungs in preparation for the seizure.  Then I often progress into what’s called ‘tonic-clonic’ movements, the classic stiffening and full-body shaking that one typically associates with classic seizures.  My hands turn to claws, my nails often cutting into my hands, my head will sometimes jerk back, my back will sometimes arch to a degree that I cannot achieve ‘in real life,’ sometimes causing ribs and clavicles to break.

It’s important to remember that when the seizure goes off, the lightning-storm in the brain, EVERY muscle is affected.  Thus, I will sometimes bite through my tongue repeatedly and urinate and/or defecate on myself.  (Thankfully, those don’t actually happen to me very often.)  The exertion that each muscle has been through during the course of the 1.5 minute seizure has often been likened to that of running a marathon, and I’ve had more than one doctor tell me that during a big grand mal, I have actually pulled every muscle in my body.  Given the pain I experience afterwards, I don’t doubt it for an instant (even though he may have been exaggerating just a bit to show that he understood how serious it was).

I have absolutely no memories of these events.  They become a black hole in my memory, often starting from several minutes before the seizure occurred and lasting until up to an hour afterwards.  My poor, patient wife has had to answer the question, ‘What happened?’ sometimes 10 times after the same seizure, because I can’t hold on to any new information during that time.  The period of time immediately after a seizure is called being ‘postictal.’  It usually doesn’t last longer than about 20 minutes, but during that time I am most definitely not myself, but in a strange way I am a very, very basic form of myself.

During this time, when I’ve finally managed to string words together, I have said some completely random things.  (One example:  after a seizure in the US, the paramedics were trying to determine my lucidity and they asked me who the president was.  In all seriousness, I replied, ‘the Dallas Cowboys.’)  I have also told people that their curtains were ugly and I have repeatedly told my wife that she was fired.  It is a very primitive form of my brain that is kicking in at the stage where I can start talking again but my entire brain hasn’t fully kicked in yet, leaving me with absolutely NO filter whatsoever.  At times, some brutal truths have slipped out (like that about the curtains), that are nothing but what I absolutely believe, but would NEVER say.  This continues to be a source of stress in my life, as you can well imagine!

After between 30 minutes and an hour, I’m back to myself again, albeit with no memory of what has happened.  When alone, I’ve awakened half in-half out of a shower that was still running, in Emergency Rooms, and face down in my home, often with injuries.  In fact, I had been experiencing seizures for several months, we think, before I was diagnosed.  I caused a car accident and completely totaled my car for no reason that the cursory exam of the ER could determine.  (Thank God, no one was injured.)  It wasn’t until several weeks later that I had a seizure in front of my mother, who, being a GP, knew exactly what was happening and immediately called the ambulance.

More often than not, though, I am safe at home or at my in-laws house, where everyone knows exactly how to best care for me during these trying times.  I know that I am extremely fortunate to be surrounded by people who love me and are completely accepting of my disease.   I oftentimes take several days to recover from a single grand mal, because of the massive toll each one takes on my body, but I’ve learned to live with a certain amount of that and try not to let it dictate my entire life.

Everyone seizes differently, but this is what happens to me.  I confess that it makes me feel ashamed to see it all here in print, but I have determined that I am not going to hold anything back about this disease in this blog, so…there you go.  It’s 6AM in the morning before my coffee, which I have learned is the best time for me to write something difficult.

Thank for you reading this, I genuinely do appreciate each and every one of you that takes the time to read my words about such a difficult topic for me.  And if you’ll please excuse me, I shall now treat myself to a cup of coffee.  I think I’ve earned it.  🙂

Celebrating the ‘Normal’ Day

Apparently, it’s common to have a majority of seizures at night for some people.  I appear to be one of those people.  Not that I don’t have whoppers during the daytime, but I often awaken my wife with a nasty grand mal or worse, a cluster of seizures.

Believe me, the next morning is not a treat.  No matter how bad the seizure has ‘looked,’ it’s ALWAYS horrible.  I’ve had a neurologist explain to me that it’s like running a marathon and/or pulling every single muscle in your body.  I believe it – my face and scalp even hurt sometimes.

Some epileptics have seizures so severe that they actually break their own bones, clavicles, ribs, etc.  I’ve only done this a couple of times in my life, thank the Heavens, but my heart goes out to those for whom this happens on a regular basis.  Sadly, it’s much more common to urinate on yourself and/or void your bowels during the seizure.  It IS every muscle in the body going haywire, after all.

One aspect of this with which I am still struggling is the embarrassment.  Even if it’s happened in the privacy of my own home with no witnesses but my cats, I still feel twinges of shame.  Obviously, that feeling is intensified to a magnificent degree when I’m in a restaurant with my in-laws and we’ve only just barely ordered the meal.  But epilepsy doesn’t discriminate.  One lesson that I’ve learned slowly and painfully over the years is that neither should you or me.  We have absolutely no control over these episodes, therefore why sink into abject humiliation?  These days, I allow myself a tiny to moderate amount of embarrassment, depending upon the situation, but my wife and my family have helped me to overcome the deep shame with which I’d associated with seizing from the very beginning.

Now, how easy is it for me to say ‘oh, don’t be embarrassed’ and how hard is it to actually put into practice?  For some of you, I’m sure it feels downright impossible.  Obviously, I am a living example of the fact that it’s not.

One strategy that I have employed to fight the negative feelings accompanying the seizures is to treat them like the enemy.  However, and this is important, every day that DOESN’T include a seizure MUST be treated like a victory.  If you’re going to decide to fight something, even in your head, you have GOT to give yourself the opportunity to win sometimes.  Especially when you’ve had a successful outing with friends, family, etc.  These are days to be cherished and appreciated much more than the average person does.

I have no political agenda here, but just to help share my experiences, I’d like to also mention that I’ve found comfort in prayer.  No, I don’t blame God for my seizures, but I do thank Him for each recovery and for each and every day that goes well.  Each day that my ‘invisible disability’ stays invisible is a gift, regardless of where you stand on faith issues.

In conclusion, don’t let just the days when you seize matter.  Keep a diary, although you probably already keep a seizure diary for either yourself or your neurologist (if you don’t, you should).  Mark the days that were ‘normal’ as well.  Live those days to the fullest – I’m not suggesting you go climb a mountain or whatnot, but don’t forget that many of your days will be under YOUR control.  And that’s the best feeling I can imagine.