For this post I want to do something a little different. I was recently put in contact with The Idealistics, a Cambridge based indie/punk three piece who, while also having kick ass music, have a member (the wonderful Ali Hirsz) who suffers with a series of rare disabilities, in particular Ehlers Danlos Syndrome. I wanted to get an insight into what it was like being in a band with such a debilitating disability, to both bring awareness to Ali’s struggles with EDS and support the band. So I set up an interview and I’d like to share with you what Idealistics have to say both about their music and EDS.
For my readers who aren’t aware, can you tell us a little bit about Ehlers Danlos Syndrome?
Ali: it’s a genetic condition that is connective tissue disorder. I’m being queried with which kind of EDS I’ve got but a few of my doctors are almost certain it’s arthrochalasia EDS. EDS affects people in different ways but for me I dislocate and subluxate (partially dislocate) all of my joints, and I usually get three dislocations a day. I bruise really easily, have fragile skin so scar easily and have abnormal scarring. I’ve also have 3 other syndromes related to EDS, including postural orthostatic tachycardia syndrome which is an autonomic nervous system disorder so I get dizzy very easily, have heart palpatations and have blood pressure issues. A big symptom that impacts my life alongside the dislocations and chronic pain is the fact that my digestive system rejects food. Doctors aren’t quite sure why and they haven’t really got a proper cure so I was fed with feeding tubes that went into my digestive system. When that didn’t work they decided to put a feeding tube that sits in my arm and goes to my heart and I feed that way now, which is called parental nutrition.
How does that effect you both as an individual and as a musician in a band?
Ali: in some ways it’s not too bad, I’ve got a lot of support from family but if I walk down the street or go to the shop, people stare and some people pull their children away. I heard one lady say to someone else ‘I didn’t know they let people like that out’. In the music industry, it completely halted our career as I was told we couldn’t play gigs because I’d ‘deter’ a crowd. People think I’m too sick and I can’t put the time and effort in and they hate the look of the tube coming out my arm. People say it’s disgusting but it’s part of me, so they’re calling me disgusting. It’s keeping me alive and I fail to see what’s disgusting about that. Other artists have told me to keep quiet about my disability but why should I?
How did Idealistics start?
Ali: I was introduced to George through a Manic Street Preachers fangroup, I watched his videos of him doing guitar covers and I got in touch with him, he asked if I played bass and if I’d he interested in joining his band, I jumped at the chance! We had a few changes in our direction, mainly maturing as people and when we struggled to find a drummer who would support our views my sister, Dom, offered to learn drums. She’s been learning for a while now and it’s been going really well. We’re very close knit.
Dom: I’d say the band started with me trying to play a prank on Ali by adding George as a friend on Facebook on her behalf, which ultimately ended up in them forming a band and begging me to learn drums. Eventually I gave in and it was an amazing decision I wouldn’t have made without them.
George: Ali saw my YouTube channel and pushed her way into the band. Luckily for me she could write better lyrics and sing better than me so it wasn’t all bad. She also had no issue making phone calls which you wouldn’t get me doing. I’d also like to add, Dom’s reluctance to join was reduced greatly when I agreed to be her drum teacher for free. Like all good teachers, the extent of my tuition was making her buy a book and read it herself. She picked it up too quickly for me to know how to go about teaching.
How do the rest of the band feel about Ali’s condition?
Dom: Obviously we want to support Ali in every way we can! We don’t experience any of the pain or stigma she does, so all we can do is check on her, make sure she we keep things as accessible as possible for her and lift up her voice. Also putting back dislocated arms and legs from time to time.
George: luckily, we’re a very close group and we’re usually able to tell when she’s feeling particularly sore or if she’s in any more pain than usual. Being aware of that really helps. Having to eat her share of our dinner is a nice perk too.
What’s next for Idealistics?
Ali: we are releasing an EP and hope to be able to give a push with that, it’s got some personal songs on there about my experiences in hospital. We really want to get back on stage and we’re hoping to do a few gigs after the EP is released. Obviously we want to find a manager and get signed but that depends if we find people who are willing to support us and not treat me or the rest of the band badly.
George: we’re always writing new music, I’m definitely hoping to experiment with new sounds and instrumentation in the future. I’m looking for an excuse to shoehorn in Ali’s Phantom of the Opera-esque vocal abilities and Dom’s love of synths! We also have folders full of songs that are already written we’re just waiting for the right time to record them and play them live.
What would you say to anyone suffering with EDS who wants to get into music?
Ali: never ever listen to other people’s negativity. People will tell you to hide your disability, they will weaken you and they will say you have a ‘disease’. No. You don’t. Never accept that and never let anyone dictate your life or your achievements. Do what you can at your pace and don’t give up!
Truly inspiring words from Ali there and I give huge props to the rest of the band for being so supportive. It can’t be easy trying to make it as a band while going through such hardship. Despite Ali’s condition I am confident just from listening to them that they could go far. The blending of various influences, Ali’s haunting vocals and the excellent guitar work are all to be admired. Their music is awesome and if they can find the right label or manager, one willing to support them, who knows how successful they could be. I am a firm believer that through music anything is possible, even the most unlikely underdog can find themselves at the top. I truly wish Ali, George and Dom all the fame and fortune they absolutely deserve. Keep on rocking guys!
Peace, Love and Cowbells,