Embracing Mortality

Later today, Lor and I will be attending a funeral. It is not for a person who we knew particularly well, but instead the family member of a friend of ours. The death was quite sudden, completely unexpected, and the family is still in shock. So, we will be attending, just to provide what little support and comfort we can.

Normally, I avoid funerals. And hospitals. And nursing homes. Pretty much anything that is tinged with the awareness of the end of life, I avoid if at all possible. I am all too aware that life is fleeting, and I usually want no part of being around for the end of it.

I haven't always been this way. I used to be quite a bit more philosophical about aging, death, and end of life issues. But, in 2004, epilepsy arrived, and my whole worldview changed.

Why is that? Mainly because the type of epilepsy I suffer from, temporal lobe epilepsy, has a really high mortality rate. About 1 out of every 1,000 people die from epilepsy each year. But, for a person suffering from intractable seizures of the temporal lobe, as I do, that rate goes up to 1 out of every 150.

But, wait, there's more! My treatment for epilepsy led to morbid obesity, thanks to side effects from the drug cocktail I was on. The mortality rate for those who are morbidly obese is about 1 in 5. Also, add on to that the mortality rate for hypertension (another condition I suffer from) - about 15 out of 1,000. My health got so bad that one of my very first neurologists informed me that, barring a miracle of some kind, I would be dead before I was 50.

It got to the point where, every morning, I was kind of surprised to wake up.

Today, things are different. My seizures are coming under control. My hypertension is resolved. Earlier this week I graduated from "morbidly obese" to "obese" on the BMI chart. (And if you think that is no major cause for celebration, you have never been morbidly obese.) My miracle arrived, in the form of bariatric surgery.

So, later today, I will strap on my courage and go to a funeral. Sure, death waits for me eventually, like it does for all of us. But for right now, I can go out and bring comfort to a friend who has lost a loved one without being paralyzed by my fear of my own oncoming demise. My grandfathers made it into their 80s (one is still alive and healthier than I am!) There is no reason to not expect that I could have another 30 or 40 years ahead of me at this point. Hiding under the metaphorical bed does no good for anyone, least of all me.

Instead, I can now "work while the sun shines", no longer expecting to be felled by my failing body at any moment. And that may be the ultimate freedom that bariatric surgery has gained for me.

Grateful For Today (Even Though It Includes A Funeral),

- Hawkwind

The LATE Edition

Hah! Tricked you all. I bet you thought I had forgotten to post today, didn't you?

In point of fact, I did not. We've had a couple of things going on today that I thought would be interesting to talk about, so I decided to wait around a bit for the final post of the week.

First Interesting Topic: Clothing. I know, I am about as interested in clothing as the next man - not so much. The subject came up as I was attempting to dress myself - something I have been doing, more or less regularly, for 40+ years now. I wandered into sight of Lor, and the following conversation took place:

Lor: Untuck your shirt.

Me: Untucked shirts look sloppy. I only wore them untucked to try to hide the fact that I was fat.

Lor: No, t-shirts should never be tucked in. It's a fashion rule.

Me: A fashion rule? Prove it!

Yeah, can you say "Challenge accepted"? She proceeded to beat me about the head and shoulders with fashion advice from web site after web site. Executive Style said t-shirts are worn untucked. Men's Flair said the same thing. The Art Of Manliness went a step further and said that ANY shirt with a square hemline (which includes t-shirts) should be worn untucked.

Pretty much the only place that said I could wear my t-shirt tucked in was Esquire - and then only under the following conditions: A) I must be wearing the t-shirt under a $1000 blazer and B) My name must be David Beckham.

Chastened, I untucked my shirt. But this brought up another point: untucked, a great number of my t-shirts appeared, as my Mother once observed, like I was wearing a tent. This led us into the great closet purge that I have been avoiding for weeks:

More room for new clothes for Lor, I suppose.

That huge empty space above was once filled with t-shirts, polos and dress shirts. Over 20 shirts got removed from my wardrobe, and at least 10 more are currently in the "sketchy" category - they might not fit as soon as next week.

Undeterred, Lor then led me into dress and casual pants purging. Let me give you a single example:

(WARNING: Please avert your gaze if the sight of loose skin makes you naseous!)

Yeah, that was the best fitting pair I owned. Every single set of slacks I owned is now headed to a donation box somewhere.

Wounded at the thought that I may soon be wandering naked through daily life, I turned my back on my empty wardrobe and headed to the neurologist's office.

Second Interesting Topic: Epilepsy treatment. I was due for some good news at this point, and boy, did I get some. My Neuro congratulated me on my weight loss, and told me something very interesting: Since I have lost over a quarter of my body weight, it is time to re-evaluate  my seizure medications! I submitted to the usual battery of blood tests and am now waiting to hear back as to whether or not I can start reducing dosages on my brain-clouding meds. I have gone through years of increasing dosages to help contain my seizures, and every time the dosage goes up, my brain function, especially my memory, goes down. 

So, I am now crossing my fingers that a reduced dosage will allow me to start remembering things that are currently totally lost to me  - things like Junior High, all my technical training, and most importantly my FIRST wedding to Lor. These items and lots more are completely empty rooms within my the vaults of my memory right now, thanks to the combination of seizure drugs and brain damage from seizures. But, if I could regain even a fraction of my missing memories... words can not adequately express what that would mean to me.

I will keep everyone posted on how the tests go - I am excited, but also afraid to get my hopes up too high.

Also, if you hear reports of a large hairy creature wandering naked through the streets of Albuquerque, don't worry too much - more than likely I just finally ran out of clothing that fits.

I Am Gonna Be Living At Thrift Stores For Months,

- Hawkwind

Movin' On Up

"When the world places a box around your life, nothing is stopping you from seeing how far out you can push those walls."
- Tracy Schofield

You may have noticed that life never sends us stressful events in a nicely spaced stream, but instead delivers them in tightly wrapped clumps in close proximity to each other. So it should not be surprising to anyone that, exactly a week after my surgery, we are closing on the purchase of our home today.

It is not exactly a new house -  in fact, it was built in 1959.

We are not having to move into the house - we've been renting it for 4 years now.

It is not a big house - it  is actually smaller than some apartments I have lived in, coming in at 1,100 square feet.

Nonetheless, in about 6 hours, it will be our house.  Which is yet another surprising turn of events in what has been a year full of them.

It is a problem that many people never give a moment's thought to, but the truth is this: disabled people don't get to buy homes. Anyone living on federal disability makes so little in a given month that no mortgage lender will touch them with a ten-foot pole. The "standard" mortgage wants your payment, taxes, and interest to total up to an amount less than or equal to 35% of your monthly income. In our case that would work out to...(pulling out calculator)...$490 a month.

Even in the current era of low interest rates, I don't know too many people who have a house payment this low. And, of course, the lowest of interest rates are reserved for those with the best credit. And if there is one thing that the years of waiting for federal disability to come through does, it is this - it wrecks credit scores. I am 8 years out from finally being approved (after 4 years of waiting, mind you), and my credit score has still not recovered.

So, like 99% of all disabled folks in this country, I rent. (Paying 67% of my total income on rent, mind you.) The only way I could have ever expected to be a homeowner again would be to inherit a home, which is frankly too depressing to contemplate - I want my parents and my in-laws to live forever.

However, fate, consistent rent payments, and unusually generous landlords who are willing to become a lending institution has suddenly placed us in the position to purchase our own home, for the first time since 2001.

Buying a home has always been one of those "landmarks" in life - you grow up, you graduate, you get married, you buy a house. In 2004, with the arrival of my epilepsy, I was suddenly shunted all the way back down the ladder in one precarious stumble -  at 33 I was a home owner, then at 34 I was suddenly living in my parent's home and having my diapers changed again. (Literally.) Just getting back to living outside my parent's home with a wife who inexplicably loves me was, frankly, further than I thought I would ever get in life after I became disabled.

Yet, today, I am re-achieving another one of those "milestones". 

If you had told me in August of 2015 that today I would be a writer, down to 245 pounds, and on my way to close on a house in a few hours, I would have asked for some of whatever you were smoking.

My nerves are so shot right now, I could use some of whatever it was you were smoking.

On My Way To The Land Of Home-Ownership,

- Hawkwind

Daybreak

Photo Credit: taduque via Compfight cc

"Daybreak. More aches, more pains" - Roger Zelazny

So, the good news is that I did get released from the hospital, and am now at home, in bed.

The bad news is that getting out of the hospital became a whole lot more complicated than any of us had anticipated.

Yesterday, at 6:15 AM, Dr. Tyner (my surgeon) came in, took a look at my incisions, had a chat with me about things to do at home, diet restrictions, and the like, then told me I would get released from the hospital right after "breakfast". (You know, 2 1-ounce protein shakes and a cup of broth.) I should be out by 9 - 10 AM at the latest.

At about 9 AM, Lor began loading bags down to the car. As she left, I noticed that two of her were leaving. Well, I was kinda tired, double-vision can happen,  so I just decided to close my eyes for a minute.

When I opened my eyes again, nothing was in focus in the entire room. I must have looked walleyed, because any time I had both eyes open, everything looked juxtaposed, like the effect from bad 3-D glasses. This was alarming enough that I decided I had better call Lor. Only then did I realize that her phone was sitting on the table next to mine.

By the time she came back, I was in the midst of a full-blown seizure.

Now, looking back, it seems very clear that I maybe could've, I don't know, used the nurse call button right next to me? I can honestly say it never occurred to me. As it tuned out, the seizure was the least of my problems. Immediately following the seizure, I suddenly had the dry heaves, broke out into a cold sweat, and just for funsies the room would spin around any time I opened my eyes. 

And this, my friends, was my very first instance of  "dumping syndrome" - too much material winding up in your reduced stomach pouch, causing all of the above symptoms. After about an hour of this, my nurse finally had to come in and shoot me full of Ativan, to prevent a further recurrence of seizure activity. The Ativan did what it always does,  and it was lights out on Planet Hawkwind.

Somewhere around 2pm Lor woke me up to inform me that if I wanted to get out of the hospital at all yesterday, I was going to have to get my mental faculties together enough to answer some questions to the discharge nurse. Ativan does lovely things to short-term memory before and after its application, so I don't remember the exit interview. I must've gotten through the question and answer session, because next thing I remember I was in a wheelchair, headed down the elevator to our waiting car. My light sensitivity was still so bad that I kept my eyes closed the whole way home, then slept most of the afternoon and evening.

So, a summary of the surgical experience? The last day in the hospital was a nightmare. I am sore as heck, especially any time I cough or have a hiccup. One of my meds tastes so bad that I am having trouble eating anything else for hours before and after I take it due to the nausea it creates. And any time I am out of bed I am still shuffling around as if my feet were taped to the floor.

And I wouldn't trade it.

I once told my primary physician that I was going through the surgery because I was finally more afraid of my weight than I was of my seizures. Yes, the seizures are disappointing. But, just with the weight loss I have accomplished so far I have the option of pursuing healthier activities to try to get a handle on them. I am no longer tied to a couch or a computer chair, doing nothing but eating while waiting for the next attack to arrive. The more weight I lose, the better my seizure control becomes.  Sounds like a 2-for-1 special to me.

Now I just have avoid driving Lor crazy for the next two weeks while rehabbing my punctured core muscles.

Not Trusting Anyone Who Says They Were Back At Work The Day After This Surgery,

- Hawkwind

In the Land of the Hot, Hot Heat

Day 3 in Tucson. Out in the deserts around us there are the skeletal remains of pre-surgical bariatric patients, caught for eternity in the act of reaching for a protein shake or Powerade Zero forever just out of their reach.

But, seriously, it is freakin' hot out here. So hot that yesterday I ignored all the warning signs and pushed a little too hard through the antique stores and thrift shops with Lor and our recently relocated friend, and had my very first heat-triggered seizure. Just to make things perfect, this occurred in a claustrophobic thrift shop where I was surrounded by floor-to-ceiling shelves covered in glassware, china teapots, and ancient porcelain dolls.

Ever tried to keep your balance during a seizure when surrounded by hundreds of old breakables? I don't recommend it.

Luckily, Lor got me outside before I racked up any damages, and we called off the expedition. I went back to our friend's apartment and took a cold shower to drop my core body temperature, then went to sleep for an hour or so. I got out of it with nothing more than a small bite on the inside of my cheek, and what will probably be a lifelong phobia of tightly packed thrift stores.

But, seriously, this is what happens from hauling myself out into the desert on a protein-shake-only diet, then working myself into the ground, then exposing myself for hours to what passes for normal July weather here in Arizona. A "normal" person would have passed out, maybe. Since I already suffer from epilepsy, my brain just took the shortcut of having a seizure. I knew darn well that this was a potential outcome.

I just didn't plan for the whole antique store part.

I can't stress enough - if you are planning on going through this process, do not follow my example. Protect yourself while you are operating on such a low caloric level. Stay hydrated. Do not expose yourself to extremely high, brain-frying heat.

And you might want to skip antiquing, too. Just to be safe.

24 Hours Until I Can Get Out Of This Heat (And Six Days Until Surgery),

- Hawkwind

The Garden of Regrets

Photo Credit: soikkoratamo via Compfight cc

How do you look at your life? When you sit down and think about the life you have led so far, how do you visualize it? I know people who think of their lives as a climb up a mountain side. Many I know look at life as a road, stretching before and behind them into infinity. Another person I know has described her life as a painting that she is creating as she goes, working the canvas from one side to another.

I look at my life as a garden. Decisions, relationships, and opportunities all grow from a plot of common ground. A few (very few) flowers have been carefully tended, given water and sunlight, and have turned into flowering blossoms that provide the beauty in my life. The rest...well, the rest are half grown and dead, having withered away due to neglect or forgetfulness, or have even been intentionally been allowed to die. To me, my life is a wasteland of drooping and blackened husks, punctuated with the occasional splash of color.

Why share this admittedly depressing visualization with you? Mainly because of the fears that are coming along with my current life choices. After a long period of stasis, my life is suddenly filled with activity and choices. And I am desperately afraid that I will screw those choices up.

For example, when dealing with the issues that come along with buying a house that is nearly as old as my parents, I can't help but have some thoughts about that other house. Twenty years ago, Lor and I were simple country mice, living in a little town in northern New Mexico. My parents decided to move to the big city, and invited us to move into the home they had been living in - the home I grew up in. About a year later, chasing dreams of being a rock star in the big city, I moved us to Albuquerque as well, selling that house and leaving small town life behind forever.

That house would have been completely paid off for nearly 10 years now.

These are the kind of thoughts that come and sit upon your chest at 4 in the morning when you are getting ready to buy a different house - one that I will not have paid off until I am in my seventies. Every bad decision I have ever made leads me to question every choice I am currently making. 

Another great example: We don't talk about it much, but Lor and I were actually divorced for a period of 4 years, before reconciling and remarrying on what would have been the 20th anniversary of our first marriage. (Follow all that?) That is significant for a pretty big reason - the car accident I was in that caused my adult-onset Epilepsy took place in the parking lot of an apartment complex. The apartment complex that Lor was moving into after our initial separation.

So, goes the theory, if I had just worked a little harder on our marriage the first time around, I never would have developed epilepsy in the first place, right? Though I sort of have the belief that everything happens for a reason, I am not enough of a fatalist that I think I was predestined to make the choices I have made over the years. I think choice is important - I think it is what defines us as a species, as well as moral and spiritual beings. 

But, if choice really matters, then making the right choices now becomes really important. The surgery coming up here in a few weeks no longer seems like the natural conclusion to a series of life events, but instead looks as yet another chance to screw my life up by making the wrong decision. With the exceptions of both times I married Lor, my track record as a decision maker is not a great one. Selfish choices on my part have led to some very bad results for my little family. I am not looking back on the previous 40+ years with pride right now, but instead with regret, and a longing to have made a few major decisions differently.

I am not sure why this is jumping on me 18 days (but who is counting?) before my surgery. But I am just fervently hoping that the seeds I am planting in my life right now can be watered and nurtured into a different kind of garden - one filled with living plants that will eventually bloom. I would love to spend the final half of my life, whether that be 4 years or 40, surrounded by beauty, derived from the seeds I am planting today.

It doesn't seem that much to ask, to hope that I am planting seeds filled with life this time around.

Trying To Find My Watering Can,

- Hawkwind

Leaving the Tribe

I spent some time over the last couple days looking at the Obesity Action Coalition, and listening to podcasts by a couple of their members. Something, I am not sure what, set off the "advocacy" switch in my brain recently, and, just like I did with the Epilepsy Foundation, I am wanting to get myself plugged into the larger world of community and political activity around another issue I am personally invested in.

Here's the thing, though: I feel kind of weird getting involved with the OAC, or any other obesity advocacy group right now. Why? Because I am getting ready to have a surgical procedure to begin correcting the condition in a few short weeks. It is as if I was joining La Raza right before I had a DNA procedure that rendered me 100% Anglo - at best I would be a concerned outsider, no longer a real part of the group. I feel like I am about to lose my "tribal" status.

It is hard to describe the importance of self-identification that comes along with a disability like Epilepsy or Obesity.  In many ways, the condition is larger than the person you are. I am not a veteran, but have heard vets talk about how "if you weren't there, you don't understand." That is exactly how I feel about the conditions I have been fighting for most of my adult life - a small group of people really get it, and the rest may be concerned about it, but they won't ever understand what it is like to be a part of the "outsider nation". They won't understand the constant efforts (and failures) to gain control of your health, they can't have experienced what it is like trying to get help through our fractured medical system, they have never been laughed at or shunned for being different the way we have. It is almost a reverse form of class elitism, looking up from the very bottom rungs of society. 

But, if you haven't been through it, you don't understand.

The crux of my problem is this: I will always self-identify as a person with Epilepsy (or as "an Epileptic", on bad days.) There is no cure for it, no process exists to remove Epilepsy, or place it into remission. Even if I should ever enjoy 100% seizure control, it will be through surgical implants, daily applications of mind-numbing drugs, and constant vigilance - not because I wake up one day and have been cured. I will remain a part of this tribe forever - advising newcomers and their families, staying on top of news about developments and potential treatments, driving my elected representatives crazy by staying plugged into the politics around research and treatment.

What happens, then, when I take the "off-ramp" from obesity via bariatric surgery and the lifestyle changes that accompany it? Am I still suffering from the condition? Am I moved over into a "Veterans" or "Survivors" group - still having something relevant to add to the community? Or am I simply now someone who was a part of the community, but left - a person who joined the ranks of those who don't understand what it is to be Obese?

There is nothing wrong with being active as an advocate for a group you are not a part of. It is an important part of education and empowerment for those whose voices are not being heard. But it still feels to me, right now, that I am going to become external to the experience. American skinny culture, fat shaming, and bullying of obese kids are no longer going to be my issues, but the issues of a group I happen to care about. I will be standing with a group, but I will no longer be a part of it.

One of the first things a good doctor will tell you after your diagnosis of a disability is some version of "Don't let your illness define you." It may not be my definition, but it most certainly has shaped my community. And I feel very strange about potentially leaving the community I have been a part of for 25 years.

Wondering If I Have To Surrender My Tribal Membership,

- Hawkwind

The Whiskey Point Tribute

Once upon a time, I was in a band.

It is so simple to read, and yet there is a wealth of emotion and history behind that sentence. From 1997 to 2004, I was part of something that I had wanted to do sine I was a little boy - I played in a Rock and Roll band. We did all the usual things: we practiced every week, we drank too much beer, we played gigs all around the Albuquerque music scene (where we drank too much beer), and when we weren't playing we were sitting around talking about the band while we drank too much beer.

It remains the most important period of history in my life. Many people wish they could go back to the good old days of High School. Not me. I wish that I was back in my garage with these people, working out a difficult riff, piecing together a 4-part harmony, sweating through a 3-hour set. Epilepsy was no crueler to me than when it took away my gift to work with other people, making music. I wish I had known at the time that it was a gift - I would have spent less time worrying about making it perfect, and more time just enjoying being a part of it.

I spend very little time here on Misdirected talking about the past. What, I think, would be the point? But after an especially evocative dream last night, I awoke this morning realizing that I have never properly recognized or thanked these people for the role they had in my life. There is no time like the present for righting the errors of the past. Accordingly, I wrote a tribute to the members of Whiskey Point. Though the letter went out to each of the band members as well, most of whom know nothing about this blog, I wanted to share with my new "family" what these people meant to me. Enjoy.

Not pictured: J. Mooney

"Last night, we were all gathered together again. We all sat at a table in a bar somewhere (it had to be a bar), catching up and telling stories about how great we were once upon a time. Jerry had put the whole thing on his tab (of course), and Brandon and Mike were trying to figure out where the whole operation was going to move to after the bar threw us out. I sat back and sipped on my Jack and Coke, soaking it in, trying hard to memorize the faces that I hadn’t seen for so long while we were all under one roof.

It was a good dream.

I am glad that 3 of us (Brandon, Jim, and Mike) have gone on and kept the music going. Every time I get out to see you play, or read your Facebook updates, or hear about your exploits through the grapevine, I am reminded that, for a few years, we shared in something awesome. More than anything, I am proud that you have kept the music alive, and are still sharing your talents with the world around you, day after day and night after night.

I am glad that 2 of us (Jerry and Kristen) have gone on and found fulfillment in other things, building lives around love and service to others. I would like to think that, somehow, playing together was an apprenticeship of sorts for you two, where you learned how much you loved being plugged into something bigger than yourselves, and carried that love forward into the destinies that lay ahead of you.

For me, the music is gone, and I haven’t yet found my place in the world, but I can look at the 5 of you and know that, for a moment, I was a part of something special - with some very special people. Thank you all for sharing not only music but a season of your lives with me. Knowing you all has made my life better, and I am always proud when I get to point at one of you and say “I was in a band with them.”

Keep your dreams alive, whatever those dreams may be.

Love,

- TJ "

Frankie: A Tribute

It has been a dark couple of days here in Frankie's former household. A kind of malaise has settled over me, reminiscent of some of my worst periods of depression years ago when I was first diagnosed with Epilepsy. Vixen, our other Chihuahua, has taken to lying on top of his blanket and not wanting to move. Only Lor seems to be able to function, speaking confidently about Frankie having moved to a better place and not suffering any longer. I can't dispute these things. My motivation is entirely selfish: my dog is missing, and I wish him not to be.

The distant voice of logic, somewhere in the back of my mind,  tells me I am being foolish: he was a 21-year-old, 10-pound dog. Get over it. That voice is being firmly ignored right now. I have had relationships with many people that didn't last as long as the 19 years I had with Frankie. My first marriage didn't last 19 years.  And though my relationships with people are probably more complex and multi-layered, they are also filled with mistrust and doubt. Nobody likes and accepts me for who and what I am as well as my dog did.

This wasn't always the case - he and I got off to a rocky start. Back in 1997, I came home from work one night to discover an 8-pound killing machine at the door, full of fire and fury, ready to tear me apart for entering his new domain. After Lor collected him, the truth came out - he had been found abandoned beneath a truck in a friend's neighborhood. Our friend's dog was a little too big and too rough to coexist with the refugee. Could we watch him for a couple of days while our friend found his owners?

The original owners were never identified, a "couple of days" turned into 19 years, and Frankie became a part of the household. I resented him because Lor had chosen to take him in without ever talking to me about it. He resented me because he thought of Lor as "his", and was not happy that I would move into his turf whenever I pleased. But, eventually, we reached a rapprochement and settled into life at opposite ends of the same house.

This all changed several years after his arrival. Unexpectedly, he appeared and crawled into my lap. And then proceeded to urinate all over me. I stood up, furious, and prepared to throw him out into the backyard, until I noticed that his back was bent almost into a bow, with his head twisted off to one side, saliva dripping out of his mouth.

Frankie was having a seizure.

His development of seizures changed the entire characteristic of our relationship. He and I were no longer jealous pack members fighting over the same resources. He and I were now allies in a common cause, struggling together against an implacable enemy who could not be defeated, whose attacks could only be survived, never defended against. Oddly, he and I fell into sync - if I had a seizure, one was coming for him the same day, and vice-versa. I sought him out for comfort just as much as he did me. Though he was never trained as a "therapy dog", that is precisely what he became.

In 2011, he slowed dramatically. Grey began to appear all through his muzzle, he became listless, and he stopped eating. We took him to the veterinarian, who pronounced that his teeth were all rotting out of his head and would have to be removed. He was delivered back to us after the procedure, tongue hanging out of his toothless mouth (a trait he would have for the rest of his life), and the vet took "the tone" - that special voice a medical professional uses when delivering really bad news. He was old, the vet told us. He would probably not ever fully recover from this. Just take him home, and make his last days comfortable. We solemnly agreed.

Within 48 hours Frankie was bouncing off the walls, running around the house chasing our new dog, and cleaning out his food bowl every night, then begging for more. He put on weight, topping out at a chunky 11 pounds. He acted like a dog half his age.

Thus began the saga of Frankie's immortality. At least once a year thereafter he would slow down dramatically, show evidence of serious medical problems, be unwilling to eat or move. We would tell the family that he was on his way out. And, every year, within 48 hours he would return to normal, baffling us all. We started referring to him as "Amarante", after the seemingly immortal old man in John Nichols' "The Milagro Beanfield War". My brother once made the comment that the human race really needed to put some thought into what kind of world we would be leaving behind for Frankie and Keith Richards to live in.

Unfortunately, no one can throw sevens forever, and Frankie's trip to the table stopped on Tuesday. We were allowed to spend some time with him, to tell him how much we loved him and would miss him, and he was able to leave this world sleeping, within our embrace. The vet's office offered to cremate him for us, to send him home in a box or an urn, but I refused. If I could not be the one to ease my dog's suffering, then I at least would be the one who laid him to rest. I dug his grave with my own hands, not even letting Lor help me, and I put him beneath the soil where he used to bask in the sun in our backyard. At last, he is at peace, even if his loved ones are not.

Though there is not a shred of teaching in my religious beliefs for the immortal souls of dogs, I have to believe that no one with a personality and soul like Frankie's would not be granted immediate access to the afterlife. Pam Brown said it best:

"If there is a heaven, it's certain our animals are to be there. Their lives become so interwoven with our own, it would take more than an archangel to detangle them."

Pam Brown

Sleep well, my friend. We'll see you when we get there.

- Hawkwind

Fighting The Odds

Photo Credit: stevenkbruno via Compfight cc 

After putting together yesterday's post, I realized a pretty significant question had been left unanswered. I mentioned that I had spent years passively due to my fear of seizures, then all of the sudden I am throwing myself down the sides of mountains and like that. So the question is: what changed?

As far as "my condition" is concerned, nothing has really changed. I still have Epilepsy. I still have to take a cocktail of medications every day. I still have an implant in my chest firing off electrical impulses to my brain every 5 minutes to reset my brain activity. I still have no driver's license, still would probably not last a week at a "real" job. There is still no cure for those of us with intractable seizures, nor is there one in sight that does not involve surgery removing significant portions of the brain. But the truth is this: I finally got to the point where I am more afraid of my obesity than I am of my seizure activity.

Now, don't get me wrong. Epilepsy is still serious business. People with Epilepsy are still 11 times more likely to die prematurely than those without. But Morbid Obesity (my variety) contributes to heart disease, high blood pressure, stroke, and diabetes - which all have their own risks of early death. And, here's the thing: a combination of gastric surgery, combined with diet and exercise changes, can remove the obesity-mortality factors completely.

When I talked with my doctor initially about the possibility of Gastric Sleeve surgery, I blurted out "I want Epilepsy to kill me, not a stroke.", and was immediately horrified at how fatalistic my view was. But my doc just nodded her head as if this made perfect sense to her. And, thinking about it since then, I can actually stand by that statement. If I already have a chronic condition I have been fighting against for over a decade, why not continue that fight, instead of having to engage on an entirely new battleground? Why fight a two-front war?

And, let's not forget the other health improvements. 2 years ago, while having surgery to repair a torn meniscus, my surgeon off-handedly told me that if I didn't lose my excess weight, I would be back in 5 years for a knee replacement. I don't want to have a knee replacement while still in my 40s. Whatever time is left to me, whether 5 years or 50, I want to make the most of. And I can't make the most of it in my current, obese, condition.

10 years ago I was positive I was not going to make it to 50. If I can last 4 more years, I am going to make it that far. I want these years to be active, to push as fast and as far as I can while doing the best I can to manage my Epilepsy. I no longer want to just sit around the house, watching the world pass by outside the window, kept in place by the twin anchors of my seizures and my weight. I want to drag that single anchor just as far as it will go.

Revving Up My Engines,

- Hawkwind

Good Morning, Guinea Pig

Photo Credit: Albert Vuvu Konde via Compfight cc

One of the negatives of getting up as early as I do is the lack of distractions. Don't get me wrong, the lack of distraction makes a perfect environment in which to concentrate on writing, but it also means that negative thoughts can get stuck in the brain, whirling around and around like a ride at the State Fair - the one that makes you throw up and leaves you with a headache for a week. And this morning's whirling ride is this: I can't seem to find any evidence, anywhere online, of a person who has epilepsy and a Vagus Nerve Stimulator having any kind of weight loss surgery.

Finding folks just with epilepsy who have had the surgery is tough enough. I found a very poignant forum post on an Australian message board from 2008: "Surely I can't be the only morbidly obese person with seizures in the whole country!" Apparently he was - not a single person responded to his post. A very small number of folks report developing seizures out of the blue after having a gastric sleeve or gastric bypass, but those that chose to report back after evaluation almost always reported some kind of vitamin or mineral deficiency as being the cause of their seizures. I've only ever found two people who reported successful treatment of both their seizures and their obesity. I may not be the first to cross the Sahara, but there sure aren't any paths or footprints to follow here.

When you consider that I also have a Vagus Nerve Stimulator installed in my chest (very similar to a pacemaker in size and location of placement), the Internet goes totally dark. There is just no information at all out there about the effect of WSL on someone with this device implanted. Heck, during my surgical consult I had to show my surgeon the location of the implant on my body and briefly discuss what it does - he had never heard of it. He waved off the importance of it after determining that it would not interfere with the laparoscopic incisions required for the Sleeve, but now I am beginning to wonder - are there risk factors here that no one has considered because no one in my position has ever done this before?

Ten years ago when I enquired about Weight Loss Surgery, my doctor gave me a flat "No" - it was not appropriate for someone in my condition. I have since learned that the issue there was the concern for malabsorption due to the way the Gastric Bypass operates, but still - we've only got a few years of reliable history on the Sleeve at this point. Who is ultimately right, my current surgeon, who says the whole thing is no big deal, or my neurologist from a decade ago who insisted that the whole procedure should never be considered by someone like me? These are some frightening points to be considering at 5 AM, spinning around on the Hurricane of Doubt.

My father has made the suggestion that I should present the whole thing to my surgeon as an opportunity for him to publish a paper in the Journal of American Medicine or some similar publication. The more I think about it, the more I think he might be right - it may be a very good idea to give my surgeon some other motivation to do some extra research for my procedure. He can be the one who boldly goes where no surgeon has gone before. All I want is to come out of this process healthier than I went into it.

Spinning Rides Make Me Dizzy,

- Hawkwind

The Paralysis of Choice

I have sat here for an hour this morning, head in my hands like the Stormtrooper in the "Regret" poster, attempting to get my brain to fire up. It is slow going today, I must admit. No witty observations, no heartfelt revelations. Just sitting here staring at the wall, noting where I need to do some touch-up painting.

It is kinda strange, really. I am currently busier than ever. Blogging fills (most of) my mornings, doing some work out on MTurk is generating some Amazon credit for us, I've even discovered a "piece writing" site (Text Broker) that will actually pay real, live money for small articles. I have plenty to do. Today I just can't seem to get myself moving in order to do those things.

It is easy enough to blame my second day of caffeine withdrawal. But I am beginning to think that the real problem is choices: all of the sudden I have some options, and I am having trouble choosing between them. I am not really used to the concept. For years, my days consisted of getting up, gaming while hoping I didn't have seizures that day, going back to bed. Now, suddenly, there are options: Do I write a post? Do I go exercise? Do I get online and work for a little while? All this while feeling that my brain is turned off still.

In many ways, it feels very similar to the years when I was suffering from serious depression - then, I would see the things that I could be doing, but didn't care enough to do them. What would be the point? Now, it is almost a paralysis, like a child in a candy store, overwhelmed by too many options. My heart knows that I would be better off choosing something, but my mind can't seem to make that connection.

Six months ago, if you have told me I would be overwhelmed with options today, I would have laughed at you. My obesity and my epilepsy between them create a very firm anchor, fixing me in a very small space - a room with windows, but no doors. Today, I am still obese. I am still epileptic. But today, unlike 6 months ago, I have hope - hope that by this time next year weight-loss surgery may actually allow me to be taking my first, tentative steps again through life, instead of merely doing laps inside the walls of my twin disabilities. And no one ever warned me that hope is a paralyzing agent.

My hands are warmed up now, the blood seems to be flowing to the brain again. Out there is Real Life, streaming by outside my window like a busy freeway. Within these walls there are things I can be doing to prepare myself for the possibility that I might someday rejoin that flow.  I guess I better get to it.

Daring to Hope,

- Hawkwind

The Big Green Monster

Every time I hobble through the kitchen in my home, I have to turn my head away from the window so that I will not catch a glimpse of my nemesis. It is big, it is green, it is frightening, and it is NOT going to go away. But maybe, just maybe, if I don't catch a glimpse, I won't be overwhelmed by my feeling that I should be doing something about it.

My arch-enemy is not a big green snake. It is not Oscar the Grouch, or Kermit the Frog. It is the huge, weed-infested yards that surround the home we currently live in. You see, our home was built in the 1950s, and is therefore not restricted by the Xeriscape requirements that most homes here in Albuquerque are. (Xeriscape is landscaping designed around low water use. Think cactus and rocks.) However, by the time we moved into the house 3 years ago, no one had bothered to do anything else with landscaping the home for years. So, when the weather starts warming up again, we wind up in a home surrounded by huge patches of weeds. Where there are not weeds, there is simply good old-fashioned dirt.

In my head, I am the kind of guy who is out every weekend working on his perfectly manicured yard -  a couple of small lawns, some fruit trees, even a garden for fresh veggies. In reality, I am disabled, mobility-impaired, and know nothing about yard care in the first place. So, I should just farm the work out, right? Last week, I attempted to do just that - I spoke with a handyman here in our neighborhood about what it would cost us to rein in my front yard. He took one look at my yard, filled with two-foot high weeds punctuated my 3 dead 10-foot tall trees that would have to be chain-sawed and removed, and quoted me a reasonable price - $60.

But, no matter how I tried, I could not squeeze another $60 our of our household budget. Social Security Disability keeps our household held firmly below the poverty line, and leaves no money for things like contractor yard care. Discouraged, I decided to tackle the problem myself. I spent two hours with a weed trimmer engaged in combat with the front yard. The end result? I was laid out for 3 days from injuring my back and knees. And my front yard is just as ugly as it ever was - now filled with dirt and dead weeds, over which still tower my deceased trees.

So, here I sit, crippled by my two disabilities - the one that keeps me from working (epilepsy), and the one that keeps me from moving (obesity). Between the two, I feel effectively trapped - and that gigantic patch of weeds in the back yard just keeps growing. Unless the Xeriscape Fairy arrives, I can expect that the situation is never going to change - even if I had the energy to take down all those weeds (which I don't), I still wouldn't have the money to replace them with something else. The circle of life continues.

Now, the odds are good that weight loss will give me back some mobility. There is even a chance (not a guarantee, but a chance) that weight loss will increase the efficacy of my anti-seizure meds - maybe even to the point where I could look into beginning to work again. But until that day arrives, I will just have to keep on waiting for the willpower to charge out into the back yard and injure myself again reining it in. Knowing all the while that the front yard is once again getting over-grown...

Sighing and Trying Not To Look Out The Windows,

- Hawkwind

Waiting on Tomorrow

Photo Credit: kentishmayde via Compfight cc

Seizures are a real pain.

Though there can be a real, live "pain" component involved (when we bite tongues, bash into walls, strain muscles, etc.), what I am actually referring to here is the more "major inconvenience or imposition" kind of pain. Like when Aunt Gladys won't shut up about her new fabulous colon cleanse diet just as everyone is sitting down to Thanksgiving Dinner. That kind of pain.

For the past several months I have been slowly getting my act together - Blogging daily, getting the HawkwindScho Twitch channel off the ground, even beginning to write articles for a major Hearthstone website. As the seizures came in, I dealt with them, worked around them, and moved on with whatever I had been doing previously. But, this past week, the Seizure Demon decided to return and show me who was really calling the shots around here. Out of the past 7 days, 5 of them have been filled with seizure activity. I have failed to write several days worth of blogs, missed an article deadline at Hearthstone Players, have been completely unable to do any streaming whatsoever. It is almost as if my disease took it very personally that I was making some headway, and decided to smack me in the face as payback. Not much fun at all.

As of yesterday, I have a new neurologist/epileptologist who is interested in more aggressively pursuing alternate treatments - "Are you satisfied, living with intractable seizures?" is the question he asked me bluntly during our initial appointment. Of course, I am not, really. But, after 11 years of this, you get kind of used to it, I suppose. You learn to live with whatever your malfunctioning brain throws at you: inability to work, inability to drive, incontinence, periods of general stupidity, lack of anything resembling a functioning memory, the social stigma that accompanies having this type of disability. But the thing you learn to live without the most is hope. To hope for an improvement in your condition is to set yourself up for a thousand pounds of pain falling on you from a great height when the latest and greatest treatment also fails to have any positive effect on you. My Vagus Nerve Stimulator brought my seizure activity down from "suicidal thought inducing" to something more like "manageable." Since its installation in 2009, every other light at the end of the tunnel has proved to only be yet another oncoming train.

As of yesterday, though, I have agreed to take some shots back at my condition. The voltage on my VNS got adjusted upward, meaning I have searing pain in my throat and head every 5 minutes when it triggers.  Is pain worth more seizure control? I believe it is - the body gets used to pain. I have also started on yet another new medication - one that supposedly has no mental impairment side effects. Given the perpetual fog that the 2,000 MG of Tegretol I live on every day has left me in, I could not accept even more damage to my thinking and memory. But this new one's major side effects are upset stomach (got that already), headaches (already all day every day), and hair loss. Am I willing to live without hair in the name of better seizure control? Sure, why not. Lor says she doesn't love me for my hair anyway - and what other person do I need to impress with my looks? Hair loss is why God invented hats. I have a lovely collection of MLB baseball caps I can start wearing, should it come to that.

So, why this post today, instead of a normal gaming post? I wanted to let all my readers know what has happened over the past week to my normally regular routine, for one thing. But, mainly, I wanted to tell my friends and loved ones that read this blog regularly that I haven't given up just yet. I am not yet resigned to life with intractable seizures, and am still willing to shoulder the burden of hope for something better down the road. Epilepsy has been a part of my life for so long now that I can't even really imagine what life without it would be like. But, I am still willing to find out.

Waiting on Tomorrow,

- Hawkwind