Things To Do In Dan’s House When You’re Dead
Hello everyone, it’s been a while since my last post but not the traditional 12 month gap at least. There’s so much to update you on but this is where I normally apologise for how long it’s taken me to write something. Well guess what? I’m not going to apologise for that any more, not because I am uncaring or aloof. Just because I have been ill and often I don’t have the time or energy to post. It’s just a fact of life and I don’t know why I felt the need to say sorry all the time. I think part of the problem for me is that a serious blog post normally means 2000+ words and that’s a big undertaking, or at least it seems it. So perhaps I will try some shorter posts as time goes on. You will have noticed my Twitter output has gone into overdrive in recent weeks possibly, this is because I feel a bit more energetic and treatment has been going well. There’s lots of life stuff to relate and I might not even get through it all in one go, let’s see. (Note to self: Good business strategy this Dan, keep them coming back for more muwahahaha)…
When last we spoke I was getting ready to help with Liverpool MakeFest at the end of June with a big team of awesome people. We did that and the event was brilliant, as it always is. It was a lot of work and I was dog tired by the end but it’s so worth it. I feel so happy every time I see a kid discover that they can make things themselves and it isn’t some exclusive club, or perhaps just that they aren’t as weird or different as they thought they were. Besides, what’s wrong with weird anyway?! It’s a lot better than being boring I can tell you that. Everything went off well and I should really write a long overdue “wrap up/thank you” post on the official MakeFest blog to thank everyone who contributed properly. I may get to that after this but we’ll see. So since MakeFest life has been pretty damn busy I gotta say. Where to begin? Probably at the beginning, seems as good a place as any.
Although MakeFest took a lot out of me mentally and physically I was able to recover pretty well within a couple of weeks and this is a major upturn for me. Up until the end of May I was often unable to get out of the house at all. Just walking down the road I would have to lean on things to make it. Although I’ve been very honest about my health here on the blog, I haven’t always been so honest with people in person. It’s a tough one. You meet someone and you’re chatting away. Then there’s that hideous moment when they ask “so what do you do?”. My stock reply is to feign stupidity and say “how do you mean?” but actually I know what they mean. “What’s your job?”, “what’s your career?” they usually ask, as if that defines us but anyway. I suppose they’re just making conversation. I normally say I am a freelancer/web developer, podcaster or musician, or some selection of those. I do like to try my hand at plenty of things. The honest answer is “I don’t have a job and often I’m far too ill to do anything but I’m getting better and working on it”. If you say that to someone on first meeting them it can be seen as rude or totally mad. Perhaps abrupt. So I got used to hiding it. Likewise when people I already knew would ask “how are you?” I’d just say fine, even if I felt like death warmed up. My thinking used to be that it wasn’t fair to burden others, or perhaps they didn’t need to know all the details. Nobody likes a whinge. It’s a common greeting isn’t it “how are you?”, the accepted answer is “yeah alright, how are you?”. Not “well I feel like death warmed up, I have an incredibly rare form of cancer, amongst a long catalogue of other health problems and my life expectancy isn’t very high…” that’s a conversation killer. If they’re still there and haven’t jumped out the window by after that it’s fair to assume they are a pretty nice person. I’ve also realised that keeping things to myself and not talking problems actually worries people more though. I’m not protecting them, I’m probably scaring them more. So from now on honestly is the best policy and although I’ve always been pretty honest here I’m trying to make sure I am in all areas.
I went to OggCamp in Sheffield on Saturday and it was so nice to see so many old friends. The overwhelming sentiment was “we’ve missed you Dan, what’s happening with your health?” which is a lovely and touching thing to hear. Many people said it to me directly and I just hugged them. Some people also said they had been following this blog waiting for health updates and I ended up relating the same long story to different people over and over. So I figured I should try to explain a little and then I can just point them here when they ask. Like a real pretentious git “have you read my latest book?” hehehe.
So here’s where we stand right now. In the last 2-3 months I’ve started regular antibiotic treatment again and it’s made a massive difference to my health. It took 2 or 3 weeks to start working but I am getting some benefit from sleep again. Without getting into all the details I will just say it’s helping me with a serious auto-immune condition it seems. I have been ill for almost 15 years at this point. All through the OggCamp and Linux Outlaws days I managed it with medication and just never talked about my problems in public. Most people never knew. I guess I didn’t want people to see me as just “the ill guy” and I don’t mean that in the cool Beastie Boys sense. I also probably worried that it might be seen as a defining thing about me, though looking back that was probably my own issue I had to sort out. I have had experimental surgery for cancer and so far I am all clear on that. I have to have regular CT scans and blood tests at The Christie. It could well come back at some stage but who the hell knows and besides, any one of us could get hit by a bus tomorrow. I don’t say that in a morbid way but you get what I mean. I have realised recently that you have to live the hell out of every day because you don’t know how many you will get. Nobody does. The reason for the title of this post is I’ve been suffering very real physical limitations until recently and some days that continues, but I am not dead. I came close to it a few times but you know what? I’m still here and I’m not going away any time soon. I wonder how many of those limitations I have put on myself mentally over the years. I seem to have spent much or my life trying to reason out the answers to hypothetical questions people have asked me. Well I’m not doing that any more. Don’t get me wrong I still fancy myself a bit of a Sherlock Holmes at times and I will can deduce with the best of them, but sometimes you have to go with your gut. So even if the doctors told me I had months to live (which they haven’t at all), my immediate response would be “oh yeah?! We’ll see about that!”. I am a stubborn git to the end. Not always a good trait but in this case useful. Some days I can’t move very much and others I can walk around the block and feel good about it, but there’s no discernable pattern to it. Managing the condition is tricky and you can’t plan around it. But I shall make hay while the sun shines and enjoy myself. I always have to some degree. Even on days when I feel totally exhausted I can usually enjoy music or podcasts, sometimes flashing screens or bright lights are too much but audio never lets me down. Besides, other people have worse problems. I live in a beautiful place and I only really need a small amount of money to life on, I have amazing friends and family and I’m blessed. So all in all I can’t complain.
Another big life change at the moment is some serious building work on my house. Only a one room extension but it’ll allow me to have a new kitchen and downstairs bathroom. Practical and fun. I need a downstairs bathroom for days when the stairs feel particularly, or if I have to have more surgery it could be useful. Beyond that though, I just love getting a bath, I did that in my flat all the time. Listening to radio or podcasts in the bath. The hot water helps with joint and muscle pains and who doesn’t enjoy a soak? Don’t get me wrong a shower can be refreshing but there’s nothing like a bath. So how lucky am I? I have a house, I am adapting it to suit me perfectly and I have an amazing family full of builders who are helping me do it. I have to say I don’t enjoy the 8am starts so much and it’s been more disturbance than I expected, but my Dad has worked really hard and is a brilliant craftsman. He can do anything. I’m so lucky to have people like that around me. Most people with a normal job are probably thinking that 8am isn’t early anyway and I can appreciate that. I have always been a night owl for some reason. My Mum says I was born at night and perhaps there’s some connection. Who knows.
My new attitude was really crystallised when I re-watched The Shawshank Redemption on Netflix in recent months. A fantastic film by anyone’s measure but there is that one perfect part where Red says “Get busy living, or get busy dying”. So from now on I’m gonna get busy living, I’ve tried the other option and to be honest I wouldn’t recommend it.
On that note you should check out the new podcast I started with my excellent co-host Caroline Keep of MakeFest fame, and so many other projects I won’t try to list them all now. She’s far more knowledgeable about comics (and many other things) than I, we have really great funny conversations. The first episode only just came out this week and the show is called Tales Of The Unattested, a confidential confession show where people can tell us anything they want and we discuss it honestly while maintaining their anonymity. We also talk a lot about pop culture, comic books and anything else we fancy. I am known to love a good tangent but luckily Caz brings us back to topic when needed. You don’t have to send just confessions, it could just be an interesting story or something else. Anything you want to tell people about but don’t because you worry how it will reflect on you. I came up with the tag line “the truth comes out where anonymity abounds” and I was ludicrously proud of myself for but I can take no credit for the concept of the show. I just thought “yes, that sounds like a great idea”. You will see on our website there’s a form on the page for you to send us your messages. There is no “from” field on there and we don’t track IPs or anything else. So you can be as honest as you like. We are certainly very honest ourselves and god we have a good laugh. Find the show at http://unattested.podfactory.org and please subscribe if you like it. You can also tell friends, enemies, or anyone else you like. We need your contributions!
Right, this is almost 2000 words so far, there’s loads to talk about from OggCamp to about the podcast, even music stuff to mention, but being that I said I would start rationing things out more I think I’ll stop there for now. Phew!
Thank you for reading, I hope you enjoyed it and feedback is always welcome, anonymous or otherwise.
Take care of yourselves and we’ll speak soon, remember people… get busy living!