Necklace by TheNavigatrix with etched elements by ArcaneArmoury (plus added Spoons!)
Ironically, it has taken me longer than I’d hoped to get this written up, due to a lack of Spoons.
If you follow my blog, you probably know what a Steampunk is. What you may not be aware of, however, is what on earth a Spoonie is. The concept was created by Christine Miserandino and you can read about The Spoon Theory here. In brief, it is an analogy to help averagely energetic folk understand what it is like to live with the fatigue that comes with some chronic illnesses and disabilities.
I’m a SteamSpoonie myself, having been diagnosed with FND in 2013. I’m still on the diagnostic journey at the moment which is why my shop and blog aren’t as regularly updated as I’d like.
I feel that it is important to raise awareness to a certain degree. It nurtures compassion and understanding. It is also important to ‘always look on the bright side of life’, which is where we have a wonderful advantage being Steampunks! I sent out a call for interviewees and several brave folk answered, so I have decided to run the Steampunk Spoonies interviews in several parts.
Pour some tea (I’d do it for you but for the physical separation in time and space…) and allow me to introduce you to our first three guests, Charli, Chiisai and Kermit:
1. Introductions first! Could you tell us a little about yourself and whereabouts in the world you are from?
Charli – I was born in Middlesex but now live in Lincoln after going to university here. I work in the gas and electric utilities sector as a technician, and also as a self-employed photographer, artist and crafter.
Chiisai – I am a 21 year old, 4’7”, wheelchair using steampunk enthusiast and cosplayer. I’m from Cambridge, UK, though currently am based in Ipswich.
Kermit – I was born in Myrtle Beach, SC on September 2nd, 1983. With both parents having grown up on tobacco farms, I was given your typical country upbringing in a beach town. Somehow I escaped without an accent, though. In September of 2013 I moved to the San Francisco Bay area, and live there currently. I am ridiculously introverted, and filled with child-like wonderment. I have a passion for most arts and sciences, valuing them both equally. Animals and their rights are incredibly important to me, but currently cannot afford a pet of my own. In addition to jewelry, I occasionally make wall hangings and refurbish furniture in creative ways.
2.Why do you identify as a Spoonie?
Charli – In 2013 I was diagnosed with severe Clinical Depression, having struggled with it alone for the previous four years. At the time, people were fearing not just for my mental health, but my physical health too. The depression at that point was really quite bad, I would stay in bed most of the day because I didn’t have the energy or will to get up, and I contemplated suicide frequently. I didn’t want to eat, my sleep pattern was really messed up, and I couldn’t go out, because I was too scared of the outside world. There was always a kind of shadow hanging over me, the so called “Black Dog”, and it would always bring me down, even when things were going well. My sense of self-worth was pretty much non-existent and I hated everything about myself. Depression is a lonely thing, even when you have people around you, and I still struggle with feelings of loneliness. Even now, when I have it mostly under control, I have to be very careful. If I feel as though my emotions are becoming too low, I’m getting even the littlest bit stressed or I’m getting too tired to control my thoughts, I have to take myself out of the situation and find someone to talk through it all with me, just to keep me from cracking again.
Chiisai – I identify as a Spoonie as I have Ehlers-Danlos Syndrome, Functional Neurological Disorder, Asperger’s, associated mental health issues, and hearing loss.
Kermit – I was diagnosed with PTSD about ten years ago. With PTSD, you can have better and worse days, but it’s not something that ever goes away. My spoons are planned and taken in a similar fashion, but for different reasons.
3. How did you get into Steampunk?
Charli – I was invited by someone I considered as one of my few friends, but I repeatedly turned her down. My depression makes me really bad at meeting new people, even now, and I didn’t want the trouble of making a complete fool out of myself. Eventually though, I found myself wandering around the area that the local Steampunk Society meet. It was a “Steampunk night”, and I was alone in the cold. I figured I would go into the pub and find my friend, as I needed to talk with her about a photography project anyway. I sat alone at a table, watching the Steampunks for a while, but my friend didn’t show up until much much later, and I was introduced then. About a month later I went back, because I felt a connection to the aesthetic more than anything, and I’ve been a Steampunk ever since!
Chiisai – I have always been interested in fixing/modifying mechanical and optical devices, but it’s only been in the past 3 years that I’ve become involved in the social aspect.
Kermit – I’ve always enjoyed the various aspects of Steampunk, but didn’t realize I could call it that until I had an idea for clock hand necklaces. When I looked them up to buy, I noticed they were associated with what I only knew as people in top hats and goggles. Come to find out, all my previously preferred aesthetics, eras, and genres take place within this newly found genre. I haven’t put it down since.
4. What limitations does your chronic illness/disability have on your every day life? How does it affect your involvement with Steampunk?
Charli – Depression makes me really bad at meeting new people, and I often find that I wish myself blending into the background. I feel anxious in crowds and often find myself feeling that I will never compare to the people around me. Sometimes I wake up, and I’m sad for no reason, and it doesn’t go away for weeks, sometimes months. I lose my appetite and I don’t want to face people. I also judge myself as a Steampunk incredibly harshly, and if I feel I have “let the movement down” in any way I can become withdrawn. That means that I will avoid certain events or places, and if people I know aren’t going, I won’t even think about heading that way.
Chiisai – The combination of EDS and FND mean that I use a wheelchair outside my house, while the Asperger’s and hearing loss affect my communication skills. These mean it’s harder for me to travel independently to get to events, which are often far away, and also to interact with people once there.EDS affects my hands a lot, so it takes much longer to make things, though this means I have a greater sense of achievement when a project is finally complete.
Kermit – With me, it’s hard to convince myself to use spoons for what needs to be done, because my spoons can easily be taken all at once. Any trigger causing a flashback, embarrassing social interaction, or simply things not going as planned can take more than one or all of my spoons. My reserve spoon hopefully gets me to a safe place before I blackout, or enter a dissociative state. Because of my shortcomings, I have not been able to participate as much in the Steampunk world as I’d like. I can’t be around people for long periods, so events are out of the question. I can’t seem to earn enough money for them or a costume anyway, as the only jobs I know how to do require too much social interaction. Making my jewelry helps calm my mind, but I can rarley afford supplies. Even when I have something made, I can easily convince myself it’s not good enough to be shared with the community.
5. How does Steampunk enrich your life?
Charli – Steampunk gives me a creative outlet and has allowed me to meet people who are like myself behind the depression. It has given me a sense of belonging; a place where I feel as though I can really be myself. Now that I know there are others out there who share some of my oddities, I don’t feel so isolated, and I have made a number of new friends. I wouldn’t be anywhere without them.
Charli, “…from last year’s Fashion Gala at the Asylum. I find that being on the stage helps me with the depression, as it makes me feel valued!”
Chiisai – Steampunk gives me something positive to focus on when I feel depressed, and has expanded my social circle a lot.
Kermit – I think my mental illness lends a different take on the spoon analogy. I can actually gain a spoon sometimes. Occasionally a positive occurrence can have enough impact to add a spoon. I was always the science and math kid, and never thought I had any real artistic talent before I started making Steampunk jewelry. Making art I’m proud of can add a spoon. Getting enough likes and positive comments on a post about that piece can add another. I’ve mostly experienced kind and supportive Steampunks who make me feel good about what I do. These people also share lovely things with me, and true inspiration can also add a spoon.
6. Does being involved in Steampunk have a positive effect on your sense of self?
Charli – I understand more about myself now that my lifestyle has a name! And I don’t feel as though I have to make excuses for being who I am anymore. I simply say, “I’m Charli, I’m a Steampunk”. And if people don’t like it, I’m happier about telling them where to go! I am definitely more comfortable with who I am.
Chiisai – Definitely. When at meetups I feel able to be completely myself, and not so constrained by trying to be ‘normal’, which leads to increased self-esteem and confidence.
Kermit – Most certainly. It’s really the only place where I am rarely disappointed with myself or others, which makes me feel appreciated and inspired. It also makes me feel like less of a nerd for always wanting to be proper and polite. It gives me a chance to express a side of myself that I’m confident in, but others don’t always understand or take the right way. Doing so reinforces my confidence in general.
7. Do you have any current projects or plans that you’d like to share with us?
Charli – I’m working on a fairytale-Steampunk-fantasy photography project at the moment, called “Shades”. It’s part fashion, part history, part Steampunk and part mythology, so it has fingers in many pies! I’m getting a lot of support from my friends at the moment, and while it’s still in the early months, I’m really pleased with how it’s going. You can see the website for it here: http://charli313.wix.com/shadesproject
Chiisai – I’m currently modifying a pair of Nerf revolvers [these are great fun], designing corsets, and my boyfriend is making me a pair of folding wings – if only these let me fly!
Kermit – Haha. I’m just trying to feed myself, currently. I’ve recently started chemically oxidizing metals to produce patinas in my jewelry, but quickly used up the little supplies I could afford. I also want to get into electroplating, soldering, and possibly welding.
You can find my projects here:
8. Silver linings – what is the best thing about being a Steampunk Spoonie?
Charli – I am loathe to say that there are any silver linings to depression, unless you count the fact that it can be controlled and diminished, but being a Steampunk gives you a wonderful support network. There are people within Steampunk who have already been there and suffered, so they’re always there to lend a hand. The whole community is so vibrant, dynamic and diverse, that there’s always someone there to support you, even when you feel at your lowest. And I met my fiance, who has also suffered with depression, through Steampunk, so perhaps that’s my silver lining!
Chiisai – (…)
Kermit – It makes me odd. I find oddities fascinating.
Chiisai – FND Hope is a wonderful charity, and much needs to be done to raise the profile of this often misunderstood and actually very common condition. EDS UK are a very good source of information and support and their information helped me finally get my diagnosis after 21 years of being a medical mystery.
Kermit (the Steampunk 😉
by Crafted Curios
Thankyou all for responding and sharing quite personal perspectives. Part 2 will follow…at some point.
~~~ Since starting the process of this post, I’ve been going through some rather interesting times myself and just this week received a new diagnosis – the master cog in the machine, really – of Joint Hypermobility Syndrome, which is seen by many medical professionals as being the same as EDS, hypermobility type (right there with you, Chiisai!). So, dear readers and customers, do please be patient as this is rather a large piece of news for me to digest, for many reasons and there will follow quite a few appointments to work out the details. The shop remains open and all orders will be dealt with in timely fashion, however, blog posts and newsletters will be delayed. Thankyou kindly for your understanding. Sally-Ann ~~~