Not Living, Just Surviving

We’ve had quite a few conversations with friends and family members in recent days, talking about the nuts and bolts details of the upcoming surgeries. While the great majority of these conversations have been strongly supportive, a few have been…less so. One recent conversation with a family member springs to mind.

The family member in question had lots of questions about what I was going to be giving up as a bariatric surgery patient. “So, no more beer, ever?” he asked at one point.

“No,” I explained, “no carbonation at all. It makes the stomach pouch expand, and you wind up right back where you started.”

“So, like, no Cokes either?”

“No, none. I need to avoid coffee too – caffeine is a diuretic, and staying hydrated is super important after the surgery.”

“No coffee!” he exclaimed. “I need coffee in the morning to wash down my breakfast!”

“Yeah,” I explained, hanging on to my patience with both hands. “Can’t really wash things down while eating anyway. You can’t drink while you are eating at all. You need all the space in your stomach at meals for food.”

He leaned back and crossed his arms, clearly disgusted. “No beer, no coffee, can’t even drink when you want. That’s not living, That’s just surviving.”

Now, I personally have a strong opinion on survival – I think it beats the alternative. And, I understand that the relative in question isn’t suggesting I should bite the dust in the name of drinking beer. It is a question of quality of life that is being raised here, not life vs. death. And, as it happens, I have a certain amount of experience in evaluating quality of life. Over a decade of dealing with Epilepsy has had me questioning many times: Is this really worth it? And, despite all the things that Epilepsy has forced me to give up, I have always come back with the answer that life itself is worth continuing, even without the various components that I used to previously enjoy.

And, here’s the thing: Bariatric Surgery may not only extend my life, but it also has the potential to give back many of the things I have lost previously. Reduced weight could increase my activity level enough so that I could start weight lifting again. It could remove my dependence on a machine to help me breathe at night while I sleep. It could mean a reduction in my arthritis symptoms, meaning I am no longer in constant pain. Heck, it even has the potential to reduce the dosage of my anti-seizure meds – meaning that the “brain fog” I am constantly in might be lifted somewhat. Sounds an awful lot like a new lease on life, where I am currently just surviving.

Is that worth giving up Starbucks and Samuel Adams? Yeah, I think so.

Considering Switching to Bushmill’s,

– Hawkwind

PS – If you have a family member who is considering bariatric surgery, be supportive – a good support structure is a necessity to be successful.

A Look Behind The Curtain

Anyone who has spent even a small amount of time following Misdirected knows that I kinda keep things on the DL (Down Low – keeping things hidden, for those who missed the class on Speaking Like The Cool Kids.) I use a pen name, major characters in my life are referred to by nicknames or pronouns, etc. It isn’t that I have any particular desire to remain a secret. Far from it, in fact – those who don’t know me can work out my real name just from looking at my email address over there to the right somewhere. But I have no wish to expose any one else’s life accidentally – as my Mother likes to say, “Those are not my stories to tell.” Where my stories intersect with other lives is where I get real nervous about what is safe to talk about.

Imagine my surprise when the love of my life, Loralia, starts speaking to me last night about bringing up a subject that I have specifically left completely unmentioned thus far. Lor is intimately involved with Misdirected – she acts as my copy editor, thesaurus, and memory bank all rolled in to one person. So, she is well aware of anything that I have said or allowed to remain unspoken in these posts. And last night she mentioned to me that I should talk about something pretty relevant to my recent posts. I countered that the information was not really anyone else’s business. She was firm: “I don’t want anyone to think there is any shame in what we are doing here.” I conceded.

So, the news is this: I am actually not going through Bariatric Surgery alone. Lor is also taking part in the process, with her schedule running about 6 weeks ahead of mine. While my surgery will be taking place in August, hers will most likely take place in June.

Our surgery coordinator and our surgeons are delighted – couples that go through the surgery together have a vastly higher long-term success rate than individuals that have to go it alone. With built-in diet monitors and accountability partners right at home, the temptations to fall off the wagon are greatly diminished. And the support system that is required for encouragement and validation? No further than across the dinner table.

Now, this has created some worries in our household. Lor has been a long-time opponent of body-shaming, and has worked diligently for decades with friends, family members and clients to help them to love themselves as they are, rather than cave in to societal expectations of what a “perfect” body should look like. Lor is beautiful and she knows it, and she has helped so many other women understand the beauty they already possess without diets, without input from Vogue and Cosmo, and without…surgery.

But, the hard truth of the matter is that Lor’s family has a long history of Diabetes. Lor’s family has lost several members to the disease already. And Lor’s case of Diabetes has gotten so bad that she recently had to retire from Massage Therapy – her joints and musculature have atrophied so badly that she is in constant pain, unable to do the work she loves any longer. This is hard news for a young woman with many years of life left in front of her. And, one of the best treatments for this disease is – Bariatric Surgery. The decision, for Lor, was not at all about the cosmetic effects of surgery. Same as with me, Lor wants to be able to have some “quality” restored into her Quality of Life.

The two of us found it very odd that, while I was waiting for my initial appointment to be evaluated for surgery, Lor’s family practitioner suggested out of the blue that Lor be evaluated as well. Lor’s doc was a LOT more aggressive than mine, and moved Lor over into the fast lane, getting her evaluated, approved, and started on the process while I was still waiting for my initial eval. Lor is basically 6 weeks ahead of me on this journey, and I have (selfishly, yes) enjoyed the benefits of being able to see what is coming down the road for me through her eyes.

Thanks again to everyone for your support and interest in this whole process. We both appreciate the encouragement through what has been a pretty mind-blowing process so far.

Envisioning Life Without Diabetes and Arthritis,

– Hawkwind and Loralia

The Internet Has Spoken

A little history: As of August 10 of last year, after 3+ years of existence, Misdirected hit 10,000 total page views.

Last night, only 7 months later, we kicked over 15,000 page views.

We went over the tipping point, in part, due to a tidal wave of views that came in yesterday – a single post that brought in more page views and more feedback than any other thing I have written. This was not a gaming post, not a post about epilepsy, no insightful social commentary on my part. It was literally a few paragraphs on the subject of starting the journey towards bariatric surgery that drove more interest here than any other 3 previous posts combined.

So, what does this mean for me, and for the future development of Misdirected?

I had honestly not intended to shift the focus of this blog. My original plan was to provide occasional, brief updates on my progress pre- and post-surgery, sprinkled in amongst the “real” content of the blog. But there is more interest in this subject than in anything else I have written. So, the question now becomes: Am I writing this blog as a diary, or really trying to communicate with the world? (I find it ironically amusing that even the blog title could be taken in the context of weight-loss surgery)

I remain a gamer. I remain disabled due to epilepsy. But, I also remain a person struggling with obesity and with my decision to address this issue via surgical means. Accordingly, I will probably be spending more time talking about obesity and the surgical process than I had originally intended. I have been a long time advocate for those disabled with epilepsy – I think my advocacy has room to expand a bit.

One thing I do need from my readers – I have had a couple people express their disappointment that I will not be doing a weight-loss related video blog. Is this something that the rest of you are really interested in? Drop me a line or leave me a comment on Facebook to let me know.

And, don’t worry. I will still keep wiping out parties in XCom 2 and Darkest Dungeon and coming here to complain about it.


– Hawkwind

The Retreat to the Blogosphere

The last time we talked, I was getting ready to find out if my doctors were going to approve me to move forward with bariatric surgery. Since then I have been through medical appointments, flat tires, financial crises brought on by my insurance carrier raising my co-payments without telling me, and a twelve hour road trip. So, like, a fairly normal weekend in the Hawkwind Habitat. (Still not sure about that name. Kinda sounds like a children’s show about eco-issues. )

So – weight loss surgery. I have been approved by both my neurologist and my surgeon to move forward with a “sleeve” procedure. This requires several more doctor visits, a psychiatric eval, and 3 months of dietary counseling before the actual surgery takes place, probably in early August. I am simultaneously relieved that I was approved and terrified of what is going to happen to me now. Being informed that one of the stipulations was No More Beer, like, forever was kinda depressing, so I am enjoying a higher number than usual now, and will probably have my Final Beer Ever event on my birthday in June.

The good news is that my surgeon thinks that I should lose upwards of 100 pounds as a result of the surgery. That is still a mind blowing number to me. The last time I weighed 200 pounds I could not drink legally, the Berlin Wall was still standing, and Bill Clinton was still the president of the USA. Let that sink in for a minute. It has been a looong time. I have only the vaguest idea of what life will be like without all the attendant crap that comes along with obesity. I just wanted to cut back on my medications, and for my knees to stop hurting so much. Not sure what I will do with myself if I am at a “normal” BMI again.

In gaming news, I have actually gotten in a couple of rounds of XCom 2 and Darkest Dungeon since last we spoke. I have managed to get my DD team to the threshold of meeting the Necromancer Apprentice, and I managed to get my XCom squad totally wiped out. Again. It is becoming a theme. However, my research across the Internet for info about these two games has led me to a couple of very interesting streamers. ChristopherOdd is currently running an awesome “Let’s Play” of XCom 2 that I highly recommend to anyone interested in the game. And my new favorite Brit, Adam, over at CallofCthulu is running daily alternating streams of XCom 2, Darkest Dungeon, and Sunless Sea, 3 of my favorite games. I highly recommend his channel, but be aware that the theme is very dark, and the language is very adult. You have been warned. If you drop in, tell him Hawkwind said hello.

I will get up both an XCom and a DD video on YouTube this week. I would like to be putting things up more than just once a week, but that is about all I can manage with all the chaos going on in my life right now. I will also keep everyone posted on the progress of the bariatric surgery journey – I had considered doing a little video blog, but can’t think of anything I could do there that I couldn’t do here on Misdirected. Thanks to everyone for all the support so far!

Wishing Myself Resistance To Beer + 10,

– Hawkwind

The Times, They Are A Changin’

The Times Are Chaning

Here it is, already Wednesday, and I am only now putting up my first post for the week. There has been some household stuff to deal with, but mainly I have been running around town dealing with various medical appointments. Let me fill you in.

A little over 10 years ago I was happy with my physical condition. I practiced 2 to 3 hours a day (you better believe that being a musician is aerobic exercise), lifted weights 3 or 4 times a week, and was constantly on the go. Sure, I was overweight thanks to a rich diet and ingesting a couple of cases of beer a week. But I could still load out all our gear, play a 4-hour gig, load everything back in, and still make it to work a few hours later. My 240-pound frame was solid – I looked very much like a fire hydrant. I used to tell people that I was the strongest fat man they knew.

Then, Epilepsy happened. Depression, lack of physical activity, and weight enhancing medications like Depakote ballooned me up to 280 pounds within 6 months of my diagnosis. Over the years I have fought my weight with med changes, failed diets, and attempts at various physical activities that always wound up with me injuring myself, having seizures, or both. Now, at only 45, I have high blood pressure, arthritis in both knees and one hand, and serious respiratory problems.

My “Come to Jesus” moment occurred about a month ago, when I stepped on a scale and weighed in at 302 pounds. I had never been over 300 before. 296, sure, but somehow 300 seemed so much more significant and real. I had to do something. I went in to talk to my regular doc, and she suggested that my BMI of 48.8 (“normal” is 18 – 24) indicated that I look into bariatric surgery. There was one catch, though. As someone with intractable seizures, I was going to also have to get my neurologist to sign off on the idea of bariatric surgery as well before I even consulted with the surgeon.

The appointment with my Neuro is today, a few hours from now. I am incredibly nervous about the whole thing. What if he says yes, and I have to have a big section of my stomach removed? What if he says no, and I am stuck here in Jumbo-size Land? The thoughts chase each other through my head like a demented carousel. I haven’t slept more than 5 hours a night in quite a while.

But, the truth is, I can no longer be passive about this. After Lor had me watch “Fat, Sick, and Nearly Dead” a couple weeks ago I at least have a backup plan if surgery is a no-go. I have to have something that will get enough weight off my frame so that I can actually start exercising again without injuring myself. If it takes surgery to do that, fine. If it takes a short term 100% juice diet, fine. I am just going to have to grit my teeth and push myself through the eruption of seizure activity that occurs whenever I start losing weight. It is a very different mindset for me, as I have spent twelve years trying to avoid seizures. But I do not want the moment to arrive when I step on a scale and see “350”, and am going to have to make avoidance of that my focus.

So, fair warning to everyone, there will be some health and weight loss posts scattered amongst the gaming articles from here on out. If I do end up going through with surgery, I will also start video blogging about that as well, since several video blogs have been so helpful to me in educating myself about this whole process. I am a big believer in “paying it forward” these days. I can’t afford not to be.

Feeling Really Large And Frightened,

– Hawkwind