Tuesday, April 30, 2019
Also a reminder that as musicians we are not machines either. Don't let anyone make you feel like you should force perfection, or care more about absolute perfection than the overarching goal of making music and creating beautiful music.
It is largely an unconsciously controlled act (especially movement)...so don't interfere or let others interfere with what doesn't need fixed or focused on.
The act of playing is context-dependent and our actions are guided by audiation, and the environment acts as a constraint to guide movement and learning, so that is really where the focus should be....on the blueprint sound/direction in our head...knowing exactly what it is we want to convey (in an overarching picture type of way).
It is really dangerous when interfered with under the wrong situation or person, so trust your intuition and gut feeling if you feel certain things (i.e. way of doing things, way of thinking, to much focus or imbalance on mechanics or technique) or someone (even a highly respected teacher) is only making things worse in the long-run for you.
Saturday, April 27, 2019
Some of my section mates invited me over for an evening of reading music and socializing. This was the first time in 12 years I played these once familiar pieces.
It takes courage to play in an orchestra again while trying to manage embouchure dystonia. It takes even more to play in a chamber setting which is more exposed. Thank God I am part of a supportive section...it means the world to me.
It's both physically and mentally taxing on a whole different level. Takes enormous effort sometimes to adapt and make adjustments on the fly. It's like trying to jump hurdles on one leg (non-dominant side) over and over again. Sometimes you know there's no way of avoiding falling flat on your face and just have to get up and keep going and reward yourself for the small victories/hurdles you did miraculously jump over.
I do my best on 4th as it is easier to manage and I actually get to enjoy the feeling of playing rather than constantly having to manually adjust my settings every other beat (literally...it's like trying to learn to drive stick-shift for the first time while in a professional race car competition...there is no such thing as solely focusing on the road or automatic pilot...you're learning as you are going at full speed and it's ever changing).
We're planning on doing some summer gigs together which I'm looking forward to! I just feel lucky to do this and forever grateful!!
I am proud to say I got through 3 hours of solid playing. Even though my endurance is shot, my dystonia symptoms were consist; meaning they didn't get worse or severely degrade my abilities as I continued playing, which is characteristic. It's kind of like a snowball effect or quicksand where the dystonia just takes over if you continue playing.
Luckily it's been manageable due to the consistency/stabilizing of the symptoms. I think that is why I feel more comfortable saying yes to playing more publicly now, since my dystonia isn't as sporadic, unpredictable, and way out of control as it was in the past. It's become more predictable, consistent, and controllable to a degree and that's leagues better than having no leverage at all.
I thank God every day and celebrate the small things, such as just being able to get a note out of the horn...not many who experience onset of this disorder can hold a note longer than half a second before either: their aperture involuntary closes, their jaw locks, fierce spasms throw them off the note, a tick causes an air leak, or the seal breaks due to the embouchure collapsing, or they can't even touch the mouthpiece because their contractions are so severe.
You have to be grateful for the small progress despite the ebb and flow of it all...it's difficult to see results, but it's doable.
Friday, April 26, 2019
Exactly 10 years ago today I played my last recital/solo horn rep. I still love the horn just as much, if not more. I still have all my manuscripts/music library even though I almost threw it all away out of anger and frustration 1 year after the Focal Embouchure Dystonia diagnosis. Just couldn't get rid of it in the end. Meant too much to me.
#nevergiveup #chinup #staystrong #havefaith
#nevergiveup #chinup #staystrong #havefaith
Monday, April 22, 2019
Day 2 of chiropractic work on my back, upper body - shoulders, neck, jaw! Feeling a ton of relief and tension reduced. 20 more sessions to go.
I know a lot of musicians with dystonia say chiropractic help doesn't work. But for me it is important since I've always carried a lot of tension and problems in my neck. I can't tell you how many times people, especially teachers, would tell me to let my shoulders down and I would reply, "I can't. It's not like I'm forcing them into this position. They are bulky and stuck this way. It takes an absurd amount of work to unwind them. It's also the whole upper body that's this way....it doesn't derive in the shoulders."
When I was 15 my neck muscles were so tight that I couldn't move my head/face to the right. My mother who was a nurse practitioner took me to a neurologist because she thought maybe it was something worse because massage and relaxants didn't help. The neurologist said it was too early to tell if I had cervical dystonia, but most likely not the case as it is rare to onset at my age and I didn't really have more of the symptoms associated with it besides lack of range of motion and zingers attacking the back side of my neck/head. The DYT1 gene also did not show up in my blood work, and he said I would have known in early childhood if this is what I had.
Nonetheless they wanted to play it safe and gave me 10 large needles of botox injections around the base of my neck and 2 months of deep tissue massage/trigger point and it went away.
However, the tension in my neck has always been there. I saw a chiropractor briefly in my mid-20's after I was diagnosed with embouchure dystonia, but only because I threw my back out. The only work they did was on my lower back and hips. However, I never thought of using chiropractic work as a means to help with the tension in my neck and upper body.
That is why I've decided to try it now. Especially after I was informed that it is part of what is getting in the way of my recovery. I know a lot of people don't believe in psychics, but I was told by a medical intuitive that the tension in my neck and upper body has always been due to my spine. That it needs a lot of adjusments around my neck to fix it because it's never been addressed. He said it's been limiting me from recovering from the rest of my embouchure dystonia, that it was blocking my jaw movement, including nerves, and contributing to my lack of sensory feedback. This along with continuing my current rehabilitation strategies should show results.
As you know, I already work hard on relieving tension in my upper body through upper back stretches, shoulder, neck, tongue, and facial stretches. My primary form of rehabilitation has been (deprogramming and rebuilding) relieving tension and then finding a window of opportunity to get leverage and work on rebuilding a new neuropathway in that area that feels most natural, along with everything else - modifications, adaptations, etc. The reliving of the tension has contributed to a lot of my recovery, so I'm hoping the chiropractic work will as well.
Right away the chiropractor told me I need a lot of work on my neck and shoulders. He could tell it was pulling on the right side of my face.
Wish me luck!! I wish you could feel how much relief I feel in my shoulders and neck currently. It's surprising how much additional tension is lingering in there
Wednesday, April 3, 2019
Before I go on break, I just wanted to share a bit of my playing. Mainly to show an example of which muscles are currently overactive (receiving overactive signals), which ones are lacking feedback/loss of sensory - mainly paralysis in the lower lip (left side) and the entire left side of face, and air leaks.
Sorry it's quite dark and difficult to see at times. It's very easy to see which muscles closest to the surface of the face are overactive while playing; especially the zygomaticus minor, zygomaticus major (runs from the upper lip into the apples of the cheeks); levator anguli oris (runs from the corners up along the sides of the nose), and depressor anguli oris (in the chin).
I'm also currently playing while tonguing, which is very difficult to do, but so proud I can do that now!!!! For the longest time I could only do air attacks/air puffs, and later alternate them. Finally able to add in tonguing more consistently without everything going haywire.
I'm playing with my mute in, on my phone, so not the best sound quality, but it captures how many air leaks there are if you listen closely.
You'll hear me use a couple of nose breaths in my pivot areas when I slur near the end. This is to help remind my muscles to not overshoot or become overactive as transitioning briefly. Sometimes I can tell if a normal breath will cause instability, and therefore take a nose breath instead. The same goes with tonguing; I can tell if it will cause instability and therefore will use a air attack instead or alternate.
My primary obstacles right now are air leaks in the low-to-pedal register, lack of sensation and control in the lower lip on the left side (limp/paralysis), and in the high register there are air leaks in the upper lip right side.
This is also the first time in years I've been able to play more aggressively or louder because I can grasp notes better when landing (landing on middle C and B is still the hardest), which I try to show in the octave jumps; demonstrating how I can dig into the notes more and not fall off.
I play a scale passage in the middle range and then play it in the low range to show the difference in the various movements going on in my face. You can see the most amount of overactivity happens when I go into my lower register and pedal register. Also in descending scale runs which are more difficult than ascending. Near the end I slow things down gradually to show you how the speed affects the symptoms too.
The entire right side of my face is stable. It compensates a lot for the lack of control and sensory on the left. It looks like it's the right side that is moving a lot and out of control, but it is actually the left side that is affected the most by dystonia.
Though it looks like a lot of facial movement overall (if it's your first time seeing dystonia symptoms).....this is actually very mild or light; usually there would be more sporadic movement going on, lateral pulls, tremors, spasms, abrupt stops in sound, and more noticeable unevenness between both sides of the face.
It also might look like it hurts, but embouchure dystonia is not painful despite how crazy things look at times. I feel it is significantly easier to play now, but the air leaks are currently the most frustrating thing occurring.
However, this is a good sign and I feel like it is a result of my sensation/feedback returning; I feel my muscles regaining more grasp overall; I can feel where I need to loosen up or grasp more. I don't know if that makes sense?
Better that it's air leaks than full-blown spasms, tremors, and involuntary aperture closing (abrupt stopping of the sound).
I've stated before that the symptoms have gone away in reverse order of onset. Air leaks and the lower lip escaping were near the beginning of onset before things got substantially worse near the height of the neurological disorder.
If you are struggling to believe you can play again, please know I had the most severe symptoms in the beginning and couldn't even get a sound out of my horn and it carried over to my ability to drink, smile, and at times - talk. Although it's been 9 years since I was diagnosed, there was a span of 4 years where I didn't play much or work solely on rehabilitating due to graduate school and teaching obligations. So about 4-5 years of solid rehabilitation, focus, and documenting to get to this point.
Hope this shows a little bit of how Embouchure Dystonia impacts my playing currently. This is actually not the best I've played or can play, but still wanted to record for this month. Will post some videos of actual pieces (2 concertos) when I return. Excited about that! :-)
Thank you for being supportive and understanding! Please remember I am going out on a limb and showing a vulnerable process/state. I wouldn't say it takes bravery, but more like patience made of iron when dealing with any inconsiderate comments that come with the choice of showing embouchure dystonia publicly sometimes.
Finally, I just want to say if you have Embouchure Dystonia, please remember you understand your body, signals/feedback, sensations, and what does or doesn't work better than anyone else ever will.