I absolutely recommend taking whatever chances you can to go someplace new. Travel, see things, meet people and experience what a new place has to offer. I understand the trip my family took isn’t something everyone could afford to do, but this applies to any sort of travel. IF you have the chance, go.
We’ve taken two trips recently – both of them out of the country.
Our first trip was thanks to dear friends who invited us along to Niagara Falls when the eclipse happened. The weather wasn’t great and we didn’t really get to see the eclipse, but the trip itself was worth the effort. We got to see a true natural wonder and spend time with friends. There were very few time commitments and allowed us to just go and enjoy time away.
Our second trip, not long after this journey to Canada took us all the way across the Atlantic to Switzerland and France.
My daughter was an exchange student in France for a year. We took the opportunity to leverage her language capabilities and go to see some of the places she had been. We went to visit people we knew as well – our exchange daughter lives in France, so visiting her was added to the route. We flew to Geneva.
We stayed and toured there, then took the train into France to meet the host family where my daughter lived. Next up was the train across the country to Le Mans to see our exchange daughter and her family. Along the way we got to experience life less like a tourist and more like somebody living there. We didn’t go to any specific tourist destination, but rather took in various places and experiences along the way. We didn’t rent a car, we took the train. We walked and learned some of the public transport systems. We got to tour both the modern aspects of the cities we were in, and the older parts of the cities.
Cathedrals were two stops that were absolutely worth going to see. We went to both the cathedral in Geneva and the cathedral in Le Mans. Standing inside those structures, getting the true sense of scale was wonderful. It’s easy to understand how people would be in awe of these towering places and the beauty they delivered. Not major tourist spots. No planned tours, but absolutely worth the effort to go.
And that’s really the point. IF you have the chance, GO. Get out. See something new. Add weird things to the list of things you’ve done. Now I can say I’ve had McDonald’s on 3 continents – and I can say I’ve eaten actual ratatouille in France. Run the gamut, see all the places, and do all the things. You’ll be glad you did – and maybe, you’ll make some friends along the way.
This Christmas season has had me more out of sorts than normal.
One thing that hasn’t changed is our family tradition of having a themed Christmas tree each year. We’ve been doing our own thing for more than 26 years now. This year, perhaps the grouchy has shown through in what our tree theme turned out to be.
The tree is clearly grouchy too…
Merry Christmas! May all your celebrations be warm and bright… now scram!
This year I am very thankful that some of my creativity and drive to write seems to be returning. It’s been something of a rough year, but things are looking up. I hope your holiday season brings all sorts of positive things your way.
I also hope your family traditions – like being the one to get the rings off the end of the canned cranberry sauce – make you smile.
A friend forwarded this editorial/opinion article to me. I read it and had more of a reaction to it than I thought I might have, so I wanted to put this out here for further discussion.
Thanks for sending this one along. It was an interesting read, but I think it highlights a couple of things that I have changed my mind about over the years.
The author talks about all the things to hide from your children. This is untrue, and in fact can lead to sincerely dangerous consequences for your kids. Do you want to have a raging argument in front of your kids? No. Do you want them to understand it’s OK to disagree so long as you work something out to mutual agreement? You bet. You can’t have the mutual agreement without seeing / understanding the differences and disagreements. This I think is one of the core issues with so many children that come up not understanding the privilege they have. They fail to understand how the world works and they are crushed when somebody denies them anything – even if that thing is of no consequence in the greater picture. It’s why so many are deemed to be “Karens” who demand to see the manager about how much milk is in a coffee.
People are chaotic, messy and individualistic in the extreme… but they need to see others and understand the shared environment we live in. Hiding the swirling chaos of the world from a kid doesn’t help them. Protect them from it? Of course. Just be certain they understand and can see what’s going on out there. It’s how they go about making the world a better place as society moves forward. They need to know the history or root of why things are happening, so they can (hopefully) do better than we did.
Children also need to understand that the emotions they’re having are real and can’t be dictated by others. “Putting on a brave face” only becomes a saying if you allow them to see that you are scared too. Show them you have feelings and allow them to understand how you process these complex things in life. I have told the younger couples I know with kids – you will never have a mirror that will reflect YOU as clearly as your kids do. They dominate your time. They are with you almost constantly for years, and so they see far more than you think they do. Don’t lie to them. It’s a bad road to travel. Don’t hurt them purposefully, but allow them to fail and recover on their own when they’re young and the consequences are limited (or can be so long as you’re paying attention). It’s one in a long list of very important lessons.
I understand what the author is saying. It was extremely stressful to have (my daughter) get on a plane and fly away for a year. It’s not even like the author’s situation where we could soothe our emotions by knowing she’d be home for the next holiday. She wasn’t. Not for the one after that nor the one after that either. It was a long and stressful year – and we all shared that with each other. We are better and stronger for it. Now we’re trying to do the same thing for a wonderful young lady here from France. It’s going to be a wild ride, and one that we share all our emotions with them for.
I am going to add here that this is a learning process and there is no substitute for experience. There’s only one way to get experience and that’s to do a thing. Sometimes you fail… and that makes all the difference in the world. It’s how you learn and a way for you to discover new things. A partial quote from an old movie I enjoy, “…think what you’ll know tomorrow”.
I don’t spend a lot of time here talking about day to day stuff in my life. There’s been a trend over the past few years to do exactly that – share every waking moment. I don’t believe I’m that interesting. I don’t believe there is anyone that interesting. Sometimes day to day stuff just needs to be unexceptional and plain. It gives both context and contrast to the things that are special or that hold more significance.
My family has had some special moments lately and has a couple of those coming up. The public doesn’t get everything. Some things are just for us.
What is not just for us is finally being in a position to try to do more to help others in our day to day lives here at Chez Hardenbrook. We’re getting solar power added to the house.
12 panel layout
Adding solar power should be something easy, affordable and common but it sadly is not. Affordable alternative power is slow in coming to the residential market here in the US. We’ve looked at it for years now and simply haven’t had the money or been in a position where we could afford to add the equipment needed to our house. We have finally gotten there, and we signed the deal this past Friday.
Is it immediate? Of course not. During the height of the sunniest time of year for us here in the middle of Pennsylvania all we can do is sign up and wait. There’s a process to getting all this work lined up, the parts ordered, and of course the regulatory things squared away (building permit, utility permission, etc.). What does that mean? It means we’re going solar… eventually. IF everything works out, we should get a series of panels added to our roof sometime in early October this year. Just in time for the weather to turn grey, the days to get shorter and the actual amount of power we created to drop right off.
In the end, this isn’t about immediate returns. This is about making long term choices for the betterment of everyone. Over the course of the next year we should generate enough power that we don’t actually have to draw from the power grid. The next step along the way is getting a power generator or battery source set up so that when / if the power grid goes out we can continue to use that electricity we’re making.
Small steps, but consistent ones. Plan for the future in small steps and make it happen. Do what you can to help. Hopefully this step is a good one.
I’ve cut and pasted a few words that I posted directly to Failbook about a month ago. I don’t like how that bit of social media works, and I like less that they ‘own’ it all. My creativity energy has been very low lately ~ but there has been a lot going on. We’ve reached a point of relative stability since this was originally written, but now the anxiety is ramping up as we wait to consult with a doctor about next steps. We will continue on, much as we have for many years now. At some point, hopefully, we’ll get back to a point where I can create more.
Long post incoming – things have been a bit out of order here.
This past Wednesday (9th) my wife had a stroke.
She and I have been through a huge amount of health stuff together, but this is different. It was far more scary than any previous medical issue we’ve dealt with by a very wide margin. I have communicated with a few folks, but I’m still catching up with a number of things.
Beck is in the hospital now and may be there until next week – we’re just not sure right now. We don’t have any solid answers. The *very* good news is She seems to be recovering. There are many medical questions to be answered. There are 14+ tests I’ve heard today (I think) that are in process. She’s had a CT scan, an MRI and a spinal tap (yes – it went to 11).
I had a lot of other stuff to say, but I figure this kind of news bomb is probably enough. We are holding up. This is what we do. YES – we did a zoom with the kiddo this morning. NO – she is not coming home right now. She is staying where she’s at for the rest of the program as far as we know. She has lived with this kind of thing all her life. As soon as the camera came on she said, “I recognize those curtains… that’s the hospital. I was wondering what this call was about”. Smart kid. It was important to us to be transparent and honest with her about stuff, so that part is all good. Logistics are moving, but communications is harder to get to. Apologies for the delay in updates, but you know, hospital and all that…More posts to follow as information pops up.
Two distinct parts developed in my head when I was thinking about how to write all this down. I’m going to start with the part that most folks will be interested in and let you decided if you want to carry on further.
Part I – Europe
That title sounds grandiose, but it gets to the point of what I want to say. Earlier this week Russia attacked / invaded an eastern European country. Declared war and started hitting them with rockets and blowing people up. My daughter is IN Europe right now. She’s been there since August and is planning to be there until this coming summer. I felt it was justifiable to do some research and put a few things together. The kiddo is roughly 3,100km (1,925mi) away from the fighting. For people that struggle with putting a picture to a vague number like that it’s roughly the same as saying I am in the middle of Pennsylvania and the fighting is in Phoenix, Arizona. It’s about the same distance.
My considerations about this.
First, that’s a really long way and generally should be safe enough. Generally. Conventionally.
Second, it is still the same land mass and is therefore drive-able, rather than being across, say an ocean so that doesn’t help my anxiety. It’s about a 34 hour drive according to the almighty Google.
Third – a chunk of that is across NATO territory (where the US would likely get directly involved) AND where she’s living is right next to Switzerland in the Alps. She’s as safe there as she possibly can be.
Overall, I don’t know that it will impact her stay overseas. That’s the part that makes it challenging, the not knowing. I can ‘not know’ here in the US and that’s a lot easier because there would need to be an awful lot of bad before things really change where I am right now. The problem is it’s better to ‘not know’ when the kiddo is here and not there.
As of this writing we haven’t had any updates from the exchange student program. That’s for both the kids overseas (that I know of) and for the kids here in the US (again, that I know of). I suspect they’re keeping a close eye on what’s happening and will go with whatever the department of state recommends. It’s important to highlight that. This exchange program is governed (ultimately) by the department of state and is part of the citizen diplomacy functions of our country. I believe getting to know our neighbors around the world and making them part of our family is an important part of making the world a better (and safer) place.
So, we pay attention and we wait to see what happens.
Part II – Old is New
Red Dawn (1984)
I can generalize things for members of Gen X here. We have always expected this. The mighty bear (Russians or USSR – whatever) was always going to attack. This is the only result from the era of the cold war, it’s just 30 years or so later than we expected. I suspect that my friends from the younger end of the millennials and the Gen Z kids won’t understand. This was an ingrained part of our culture and our media growing up. It was the news. The red threat was always there. This is not new, it’s old and late.
What do I mean? Who was the opponent in Rocky IV? That’s right, Ivan Drago. Who did Rambo fight in the second movie? Yeah, that’s right, it was a Russian helicopter. Hunt for Red October anyone? War Games. Red Dawn. Invasion USA. Those are the splashy action movies, but there were tons of cloak and dagger movie / television adaptations. Falcon and the Snowman. Firefox (Clint Eastwood thinking in Russian). When it wasn’t serious, it was mocked. This could be Spies Like Us or a Wendy’s commercial (very nice). It was pervasive. It was inescapable. This was the world.
Now that it’s here, I’m not sure how to feel about it. I mean, they’ve always been the bad guys. The propaganda worked. I don’t see redeemable qualities. I don’t see roads to peace, I only see roads to the world becoming a nucular wasteland. I don’t believe the generation in charge knows how to do business that isn’t set in that pattern. I don’t know if I would know either – it’s all I’ve ever known. I hope the Ukraine remains whole and independent. This is when we need cooler heads to prevail – because escalation doesn’t end well for anyone. I hope this war does not spread. I do not want World War III.
It’s Tuesday morning as I write this. The 24th of August. To a vast majority of the people I know, that’s all it is. It’s Tuesday morning and there’s work and maybe a list of things that need to get done at the end of the day or a show to watch tonight. I know at least one person who has a birthday today, so that might be a little special moment with a dinner or a gift, but generally nothing very exciting.
For us… exciting might not be quite the right word, but it definitely IS a big deal for us. Today is flight day for my daughter. She is leaving the country to study for the next 10 months in France. I’ve written about parts of our journey here before. We’ve done tons of preparation to get to this point, but today is it. Today is the Big Day. Flight day.
Nobody slept well last night. I set an alarm, but was awake two hours before it was scheduled to go off (despite staying up extra late in an attempt to be more tired when heading off to bed). I got up and have been pacing the house for more than an hour. I’ve played all the vapid games on my phone. I listened to the news, checked the weather radar and reloaded the flight status page twice so far. There is this driving urge to do something, do anything and there’s simply nothing left to do. We finished the laundry yesterday for my daughter’s things. The bags are packed. The phone is charged. The friends have been visited. The family has been hugged. We’ve looked at the airports websites. We’ve done as much of a virtual walk as we could to get a feel for how the journey will go. My daughter has been in touch with her host family and they’ve told her who would be meeting her at the other end of her travels.
I’m still pacing.
This is anxiety.
Today is also an uneven day. As a parent I’m anxious and pacing, but ultimately my part in this will be over by lunch time today. We’ve got to get the kiddo TO the airport and in line for the security check. That’s it. Then we wander out of the terminal, pay for parking and wonder what the rest of the day brings. My daughter will be boarding a plane here, flying to Chicago and gathering with other kids from the program who will be on the same flight with her. Then after a short layover it’s off to Paris. Long flight, landing and meeting a rep from the exchange student program on the other end of the flight. That person will pack her onto the train and head her off to her host family. When all is said and done she will have been traveling for more than 20 continuous hours. She has snacks. She has a water bottle. She’s got money to grab a meal when she gets a chance ~ and we’re going to be sitting here at home unable to be with her, help her or join her in the experience. There is no doubt that I’ll sleep terribly again tonight. I’m going to be a distracted mess at work tomorrow morning until I get a notification from her that she has landed safely. I’ll only be truly relieved when she lets us know that she has arrived at the train station where her host family has met her and she’s safely headed to their home to start her adventure in France.
It’s also a sign that I have written more here out of anxiety than I’ve written in two weeks on any other subject. I’m not sure how other creative types deal with what feels like the opposite of the muse. Distraction. Inability to sit still.
This is it. As so many others know it… it’s Tuesday. It’s a Big Day.
For anyone that isn’t in the know for what’s going on with my family, we’re getting ready to send my daughter to study in another country via an exchange student program. I’ve been volunteering with this organization for a number of years and I’m excited for my daughter to participate and learn more about the world we live in.
Part of getting the kiddo ready to go is applying for a long stay student visa. In order to do this we were required to appear in person to make this application. I thought we would be doing this at a consulate office or some place directly connected to the embassy.
Trio of Trouble!
The place we needed to be for our appointment was in Washington DC, so we decided it would be great to have along one of my daughter’s friends who had never had the chance to see our nations capitol before. My wife and I have both been there a number of times and were very excited to share this experience with the kids. We woke up early, jammed ourselves into the car and headed to the Metro. We really appreciate being able to use public transportation like that. We don’t have a great bus system and no trains at all around here, so that was treat the first. Navigating the transit system. We hopped on the train (also a first for our friend) and headed to the address.
I was wrong. Where we ended up was an office for the company VFS. It’s not actually a consulate or an embassy. People connected with those places might be in the background, but this was just an office on the second floor of a plain building over a kabob place. Far less dramatic than we thought it might be. They DO still require a security check to get in (metal detector) and they ask questions about Covid. Masks are still required. But in the end – a lot like going to the DMV.
We didn’t wait long as we had an appointment set up. We pulled out all the paperwork and thought we were in great shape… right up until she asked for something that didn’t have the same name as the paperwork we brought. We figured it out, but that was a moment of stomach lurch. We can’t have the visa appointment too far away from the departure date as it will only be good for a year. That also meant we’re cutting it very close if something goes awry. Then it did. The required photos we brought were deemed unacceptable. The agent we were working with was quite nice and very helpful. She pointed us at a store just down the block that would get us a new photo on the spot. Once we were done with the rest of the paperwork and the biometric scanning (photos and fingerprints) we popped over to the shop, got the picture we needed and were able to drop it off again in about 20 minutes time. All in all a good thing as we’ve gotten all the paperwork turned in.
This appointment was a source of anxiety, but once we finished that, the rest of the day was ours to sight see.
And that’s where things got frustrating.
One would think in the post pandemic times that we live in the desire would be to give people distance and extra time to work with things. That is not the case. The few museums that were open at all (and that was far less than we expected) had reduced hours. We thought to spend a couple of hours at the Smithsonian museum of natural history. It’s not a lot of time, but we’d hit a couple of exhibits ~ just take our time and chat while we walked… The lines at each entry were out the doors, down the main stairs and halfway down the block. Not exaggerating. We took one look at that and said, “How about we look at the gardens?”
We wandered about for a while, but it eventually became clear that the very few things that were actually open were jam packed with people. We were getting worn down in the summer heat, so we settled for walking the mall and looking at the capitol, the obelisk and the castle from the outside. Once we’d done that we just hopped the train and headed home again.
In the end it was a good day because we accomplished the main goal for the day. Visa paperwork is in. We got to share a trip to the capitol with somebody who had never seen it before. At the very same moment, it was a disappointment of a trip. The food we ended up getting wasn’t great. We missed our chance to have dinner in Chinatown. We couldn’t get into any museums or even the welcome center.
What does it all mean? It means that after our schedules settle down a little more and the world continues to reopen we’ll have to set up another trip to the DC area. We love all the things to see and want to have an excellent trip… So we’ll try again!
Over the past few years I have written about health related things a couple of times. I haven’t written a great deal about the current conditions we live with – here in the middle of a global pandemic. A friend wrote a piece the other day admonishing folks to have a certain level or preparedness when it comes to things going pear shaped on the medical front. I’m going to repost all of the story I’d done previously further down, but I am need to emphasize a few things first.
One of the most important things you can do is be aware of your own health. Don’t lie to yourself about it. That’s not going to help anyone. Once you are honest about things with yourself, try to figure out if there are any things you should be doing to help yourself to maintain. Sure getting better is an important goal, but sometimes stable is where you need to start. Staying healthy is a long term struggle.
Sometimes in that struggle, things go wrong. Stuff happens. It happens to all of us – some of us more than others. (One of the lines from Animal Farm that has stuck with me all these years, “some animals are more equal than others…”). When it comes to being the support person for medical related problems I have gained a fair amount of experience. As I typed in the notes to my friend, this is not my first rodeo. I have been “support guy” for 3 hospitalizations a year (on average) for the past 15 years. Medical problems/emergencies/surgeries can be scary things, even to those who are familiar with the processes involved. There is a list of things you should consider in order to be prepared. I’m going to cover a few here.
It’s a good idea to have what the military guys call a “go bag”. It’s a backpack or some kind of gym bag or something that has emergency stuff in it. Get some casual / loose fitting clothes and put them in a plastic bag in there. Also in there:
Insurance Information List of Medications and Medical Conditions Toothbrush, hygiene products. A novel, puzzle book, electronic game to pass time Extra phone charger, AC adapter Personal Emergency Contacts
Set up a Text Group to notify key individuals at once.
Appoint a main point of contact among your emergency contacts to avoid confusion.
Make sure everyone has a role – who takes care of the pets (and how)? Who gets the mail (where does it go)? Who needs to call others? Who has access to your vehicle and home? Who will secure and watch your home in your absence?
Vital on this list – get your will, your living will / medical directives AND a durable power of attorney done. No, it won’t be free. YES, it matters a lot. Do it as soon as you are able. This is not the territory of the ancient and infirm. You need these documents and you need to put them on record at your doctor’s office. Keep a copy in whatever secure location you have at home. Make sure people on your list know about them and can get to them. This is NOT a secret!
Make copies of your (general/big item) medical history and your list of meds. Shrink these copies down to a small but readable size. Get self laminating sheets from the dollar store and make them durable. Jamb those things in your daily carry item (wallet/purse/fanny pack). Have an extra (durable or not?) copy that you can simply hand to the EMT/Paramedic/nurse/police officer and not worry about losing. Keep this information up to date!
Laminate!
Don’t Panic. You help nobody if you can’t help yourself remain calm. Freak out later, take care of your people first. IF it’s possible, get a second person to listen to what everyone says. Don’t be afraid to take notes. YOU must be your own advocate!
Track all the things. Discharge paperwork, dates of service, home instructions/restrictions. Yes, it’s like homework but it matters. Keep all this in a safe and accessible place. The insurance company doesn’t know what happened and will probably have lots of questions later.
Ask friends for help, and give help to your friends when they need it. It’s a very hard lesson to learn when people you thought were “tight” with you bail at the first sign of trouble. Take care of yourself and those you care for.
This is an edited version of what I wrote before, chronicling our early roller coaster ride of heart and health related issues. There has been a LOT more since this was written:
—-
I wrote this for our fanzine as part of our first meeting at The Midtown Scholar. I felt it was important to give a little sample of how the community of fans of science fiction and fantasy can really come together and make a difference, but I don’t want to limit the number of people that see it. I have had many wonderful experiences with this fan group and genuinely hope to have many, many more. Rare Constancy was originally written as part of an advocacy fanzine to help raise awareness of heart problems among fans. I’ve kept the advocacy bits in here, but I also hope the connections I’ve made to some wonderful and amazing people show through as well.
I’ve not experienced heart problems myself. I hope I never have to. I hope you never have to either. I’ve got some small experience dealing with hospitals, ICUs, cardiologist visits and all that mess. You can keep it if it’s all the same to you. Nothing against the people doing those jobs, I’m just not a fan of hanging out there more than I really have to.
Rare
Just over 5 years ago (at the time of this writing) my wife and I were expecting our first child. It wasn’t a simple process with the doctors because there was a certain amount of risk involved. Rebecca, my wife, had been diagnosed with a heart condition when she was very young. She had been taking medication for this “condition” which was diagnosed as various things, including Cardiomyopathy, all her life. The doctors monitored and checked and made copious notes, but in the end we were ready to go. We were thrilled, excited and running about trying to “be prepared” just like any other first time parents. We thought we had it all nailed down. As the saying goes, just when you thought you had all the answers somebody changed the questions.
A couple of weeks after our beautiful daughter was born wonderfully healthy and without complications, my wife started having trouble breathing. She had a cold and was as tired and wrung out as any first time parent. We did our best to cope with everything. Despite our best efforts my wife’s health got worse. Worse to the point where we needed to get back to the doctor. As it happened, this was fortuitous timing. She described it as drowning. Very, very slowly drowning. My wife had pneumonia. That’s bad in and of itself, but it didn’t respond to medication well because as it turns out pneumonia wasn’t all she had going on. That was where things really started to go downhill.
In terms that I can understand, congestive heart failure means the heart weakens leading to things like fluids building up through out the body and that does things like puts pressure on the lungs making it hard for them to expand properly. The fluid also adds pressure to the heart (already less than perfect in my wife’s case) and makes it’s beating less able to pump things out, therefore allowing more fluid to build. Lather, rinse, repeat until dead. My daughter was born mid November and before Christmas my wife was in the hospital with congestive heart failure. I was home with our newborn and lots of long days and nights.
I’ll be honest. Those days are a blur to me now. I don’t remember what I did other than sleep mostly dressed with one hand on the baby basket rocking it in my sleep. I could mix formula without conscious thought and have a diaper changing time that would shame most pit crews. Christmas in the hospital isn’t a great thing. The staff there do their best to keep spirits up, but tinsel on a gurney doesn’t look festive to me, it just looks sadly out of place.
After a couple of weeks attempting to get things cleared up and get medicines straightened out my wife was released from the hospital. The doctors gave directions to have very limited fluid intake and a low sodium diet in order to avoid a reoccurrence of the fluid buildup (and therefore more heart failure).
Constancy.
You are educated people! If something is vague or unclear, ask questions consistently! How much is “limited fluid”? Turned out they wanted to limit my wife to a liter of fluid per day. One liter – any and all liquids – that’s it. How low is “low sodium”? How about less than 1500mg per day. For perspective, a typical candy bar has about 150mg of sodium in it. Yeah, 10% of your daily allowable total for a snack. Try that sometime – see how it works out. The key is to ask every time you don’t understand something. Get specifics. This isn’t easy to do in emergency situations, but once the immediate crisis is past there really isn’t any excuse. Read everything they give you. Consistently follow their recommendations. The only person you’re lying to if you don’t is yourself. The ones that truly suffer are those around you. If you’re in the support position, as I was, this is the key to getting by.
Rare.
Be one of those rare folks that takes the time to ask the questions. It’s your (or your partner’s) health, be interested! You don’t need to be like my wife and ask if you are allowed to watch procedures while they’re happening, but you should get the scoop on them. Usually once the doctor knows you’re interested they’re more than happy to expound endlessly about the minutiae they were forced to memorize that nobody cares all that much about on a day to day basis.
The end you say? Hardly.
Sometimes despite your best effort things don’t go the way they should. After ten months of following this strict plan, counting everything, residing within the limits given, and taking all the medicine as ordered Rebecca started having trouble again. Yes, for those of you scoring at home that brings us around to another holiday filled with heart problems.
Here is something from the glory of e-mail archives, a message to friends in my wife’s own words:
“About 3 weeks ago I started to have a tight heavy feeling in my chest. When it kept coming back after a few days I called the cardiologist. They are a little cautious about these sorts of things considering the situation, so in I went for tests, tests, and a few more tests. The nuclear stress test they did led them to believe I had a blockage which led to a recent heart catheterization. During the cath they realized that I did not have a blockage, but that my arteries don’t all go where they’re supposed to. In other words I was born with an abnormally formed heart. (I blame Dad’s Polish heritage…probably had the freakin’ blueprints upside down or something when they made me. What the hell? I blamed his German heritage for my liver processing the Coumadin so fast that they couldn’t get my levels high enough and I was stuck in the hospital for weeks over Christmas. Good thing Daddy’s got broad shoulders, huh?!) Don’t ask how someone can be seen for a heart condition for as long as I have and they just now realize what exactly the problem is. Apparently, the whole thing is pretty rare…”
Rare.
There are times when it’s not such a great thing to be the rare one – and despite television’s take on all things medicinal – heart trouble is one of those times. The rare condition my wife had is actually called ALCAPA (Anomalous Left Coronary Artery originating from the Pulmonary Artery). Rare in the United States means it affects 1 in 300,000 live births. ALCAPA represents approximately 0.25-0.5% of congenital (born with) heart defects. When it does happen (these days at least) they either find it in infancy because the baby shows signs of heart failure and they fix it or it kills the baby. In the odd instance where the child survives and reaches adulthood with a misdiagnosis or without being diagnosed at all, the defect is most commonly found post-mortem. Usually the person just drops dead with no signs of anything having been wrong – because the heart is only working in the neighborhood of thirty percent of its actual capacity.
Thankfully we have a fantastic cardiologist. Once he figured out what was wrong and how rare it was to have an actual, still breathing case of this he told us the straight version of things. He said there was a pretty good chance this was a once in a practice kind of thing for him. He may never see another case like my wife if he practices from now until retirement. I say he’s fantastic because rather than try to fix it himself he wanted to direct us to his mentor (who had seen three or four of these cases). Rare indeed.
To make a very long story a little shorter, we ended up consulting with the mentor (a fine thoracic surgeon). He, in association with his partner, had written a peer reviewed paper on the condition and had done some studies on surgically repairing the condition. I say if you need a repairman, get the guy that wrote the directions when you can.
So at age 33 my wife joined the zipper club and had open heart surgery to repair the defective arteries and place a new valve in her heart. It was a very successful procedure with fewer complications than expected. The only glitch in the entire process was with the camera they had set up to record the procedure for teaching purposes. If something in the process is going to fail – let it be the camera that’s recording the whole thing. The procedure was smooth and the hospital stay relatively short. Recovery time from open heart surgery is not so short.
Constancy.
I am amazed and blessed with the friends my wife and I have through fandom. They are chosen family for me, and they are always there. I had a friend from this crowd volunteer to sleep on the couch one night each weekend during those recovery months so that I could get some rest (my wife wasn’t allowed to pick up our infant daughter for six months after the surgery for fear of tearing something). When my schedule became too tight and I couldn’t manage everything I had a friend from the group burn one of her vacation days to help out. I know how few of those everyone gets, and to have a fellow fan surrender one in the name of helping out is something I am grateful for to this day. Be constant for your friends and fellow fans, it means more than you know. When times get really tough your true friends remain.
Cooked meals, companionship and helping hands all from connections I made through fandom. Fellow fans are my chosen family and have been for a very long time. The sense of community is amazing for such a diverse and scattered crowd. Once connected all those years ago I found a rare and constant bunch. They all showed me how amazing (and crazy) they could be when the chips were down. I’m hoping to continue to expand the circle of fans I know because I can’t imagine who might need my help out there, but if I can pay even a little of these things back it will be worth it.
