Wednesday, July 24, 2019
Saturday, July 20, 2019
Similarly professional and advanced musicians know what it takes to play at their level/caliber, but very few understand career ending setbacks because it requires experience - having gone through the same devastating injury/disorder in order to help others.
This goes double for those who help others with focal dystonia because research has shown that the most effective rehabilitation strategy so far (besides DBS/brain surgery coming in at #1) has been retraining the sensory and brain pathways in order to restore motor skills. This is no easy walk in the park.
Who understands the process better than musicians with the disorder and professional neurologists who invest years of research into studying it? A neurologist who is dually a dystonic musician and medical professional would be highly sought after if one where to exist.
Because there is no known cure means that treatment is symptomatic. Just because there isn't a cure or etiology doesn't mean musicians with dystonia should ignore their symptoms.
I say this because I've had several brass professionals and teachers tell me and other dystonic brass players to ignore the symptoms, not get caught up in addressing individual symptoms and instead focus on musicality and air. There are so many things wrong with that advice I could write a book!
That's like going to the doctor and telling them, "I don't know what caused this cut on my leg, so please don't treat the symptoms/bleeding!"
There are a number of things that could have caused the cut, but what really matters right now is visually obvious. Even if the bleeding isn't successfully stopped all at once, we must attempt to and go from there.
If you look at any disorder or illness that doesn't have a known cause or cure (there are a lot), the only solution is to focus on alleviating the symptoms! This is important because finding ways to decrease the various symptoms (even if not a cure) leads to overall improvement and in return this increases the person's quality of life.
Treatment is not just about finding a cure. Treatment involves overall well-being of the afflicted person and giving them the tools to reduce their symptoms as much as possible so that even if they can't completely overcome it, they can come very close. In fact, enough to manage it and re-establish their love of playing again. It gives them hope. Most importantly they witness progress and it's through this process of understanding we learn more about how this complex disorder works!
We can't just throw everything we know about it as a neurological disorder out the window just because there is no cure yet. I say this because again, I have been told (along with other dystonic brass players) by professional brass players and teachers that due to there being no cure we should dismiss it as a neurological disorder (as if doctor's randomly labeled it focal dystonia for no good reason and none of the research and evidence means anything).
Do you think telling a musician with dystonia that it's all in their head is going to help when you don't even know anything about the disorder, have never had it, and you're just making assumptions and believe you're right because you've evading injury or due to your status/reputation makes you more qualified to give advice?
Let me tell you the quality of skill level and good habits in a musician does not make you less likely to develop dystonia or avoid an injury.
In fact, you are more prone to developing focal dystonia if you are healthy and at a high skill level - e.g. an established professional musician, advanced or highly skilled amateur, classically trained (e.g. a classical musician), natural, fast learner/have always excelled in your studies and playing, in leadership positions, at the height of playing level, male gender, middle-aged, have writers cramp or it runs in the family or dystonia does.
Telling a musician with dystonia to ignore the symptoms is ridiculous, or to stop retraining with another dystonic musician just because they are not a doctor is illogical (how the hell else are we going to gain any insight or move forward?). Equally it's unfair to tell them that no neurological rehabilitation method is worthwhile just because it's not a definite cure. The same goes for telling them to not try standard medication prescribed (for some it actually helps). And more aggravating is when others tell musicians with dystonia to not trust neurologists.
Yes, there are few neurologists who really understand it in-depth, but the ones that do are on our side and researching it because they want to help us. We must not forget that. We need them, and they need us in order to find answers.
By telling musicians with dystonia to avoid seeking the help of others who have it, avoid neurologist, ignore the research, ignore the symptoms, and only trust professional musicians who have never dealt with an injury/disorder is highly presumptuous, misinformed, dangerous, and just plain stupid logic.
Yet this is how things continue to be. Can't tell you how many times I've been told to go talk to "so-and-so" (insert name of random professional musician who knows nothing but how to give advice on mechanics, technique, breathing, or who tells me it's all in my head). It may be out of good intention but it's more harmful than helpful...and disappointing.
Stop with the assumptions, bad advice, and not giving musicians who actually have experienced career-ending setbacks and understand the situation credit.
Just like the treatment of most other neurological disorders, focal dystonia treatment must be individualized and requires great depth of understanding; not only from a medical standpoint, but from the viewpoint of the afflicted. Therefore, both sides (neurologist and dystonic musicians) must come together to create a holistic and cohesive approach. 💕
Friday, July 19, 2019
Today I got a notification that I reached 500 followers on my facebook page Living with Embouchure Dystonia!
Although I started my blog in 2011, I didn't start my facebook page until six years later. At the time I didn't keep it updated because I don't like attention; I'd rather be found when needed (like a library book) than posting all my stuff up front in a more mainstream manner. Thanks to the suggestion of a highly encouraging friend, it wasn't until this last year I really started to utilize the page for sharing my blog posts and I started a website.
I know that this complex and mysterious disorder (Focal Task-Specific Embouchure Dystonia) scares serious brass and wind musicians since most avoid speaking about the subject of injuries, disorders, and setbacks in general.
It is no surprise that several (but not all) musicians who have never been through a major debilitating setback refuse to believe such a disorder exists; many don't believe you can get injured by the simple act of playing music; that setbacks can be altogether avoided if you have healthy habits and proper mechanics; and that if you end up injured or develop a disorder then you are doing something wrong....
......which all 4 of these beliefs are false, and to be honest - ignorant. You can't label everything as "bad habits."
Sports medicine professionals and professional athletes who have gone through injuries or who have dystonia would wonder what is wrong with you if considering any of the above as the "problem and answer" to majority of setbacks that happen.
Therefore it makes me feel hope knowing that there are a handful who are able to look past the fear and instead support the understanding of this complex disorder and know how important it is to break down these false misconceptions surrounding musician injuries and disorders. The gap between the medical field and musicians must be bridged. It's never going to happen if musicians keep avoiding the subject and lack education on it.
Musicians with injuries and disorders don't ask for pity (it's not like we have leprosy), but instead respect and understanding in knowing that setbacks are not easily avoidable, resolved, or a simple matter that can be summarized and labeled as the fault of the musician only/themselves.
Many don't speak out about their injuries due to fear of being judged, damaging their reputation, or because they can no longer put up with the disappointment in their peers and colleagues who cannot or refuse to understand their situation.
And often times peers and colleagues don't value an injured musicians perspective and deep insight because they hold a false (and harmful) belief that "injured musicians (even if a close friend or long-time colleague) must not know how to take care of themselves and need the advice of a non-injured musician who has evaded injury....otherwise they would have never been in this situation to begin with".
Thank you again to those who have always been supportive and open-minded. I will always continue to write for those who have it, those who want to understand it (from a person's perspective who actually has it and devotes their life to understanding it and overcoming it), and for my own self and wellbeing.
I know this wasn't the most heartfelt thank you, but please know it really does mean a lot. You all are making a huge change in the direction of the future for those who do end up injured or develop a disorder (believe me, no one ever sees it coming or expects to end up in such a situation...NO ONE).
It's important to keep the doors of communication open, as well as minds! 😊 ❤️
- Katie Bergløf
Friday, July 12, 2019
I love writing about taboo things like musician injuries and musician disorders; more specifically focal embouchure dystonia and raising awareness....god forbid it ever happen to you someday. No one ever imagines it could happen to them especially when they feel in their prime and it comes out of left field. Wouldn't wish it on anyone.
It may not seem as life-threatening as a lethal illness, but losing what you love, your calling, your career, greatest pursuit, and what gives you purpose...it's as painful as losing a loved one, it leaves you as helpless because it is a form of degraded mobility, and it can deprive one's life of meaning...and yes, even some find it hard to keep the will to live. Nothing can fully replace that loss. Don't tell them to try to move on with a new instrument or profession.
When your entire life revolves around something and you've invested years into it, disassociating is impossible for some. It's a loss of self and identity too.
That's why I continue to write. So I can relate to those who are going through the process and understand how truly frustrating and debilitating it is on every level during the aftermath and grieving process - physically, emotionally, mentally, and even spiritually. It is no simple matter.
I've never been one to suffer in silence just for the sake of reputation, nor am I one to go out without a fight.
That's why my passion and very protective side comes out when standing up for those who have the disorder and are ignorantly labelled or told they are musicians who are "simply dealing with bad habits or performance anxiety," when that couldn't be farther from the damn truth! 🔥
It's not so much that I love what I do (it's not like I chose to have focal dystonia), but I love seeing that fire in other's eyes again when they say, "I can overcome this. I'm not giving up. I can pave the pathway one step at a time."
That's all that really matters. Helping others and making a difference even if in the smallest way. I'd rather be helping others stand up after they fall than competing in music politics. I will say I don't miss the competitive arrogance or egos you see in several musicians, even though I miss the act of playing, hearing my own sound, and performing alongside friends and colleagues the most.
I don't like victimizing myself and prefer to view myself as a survivor, but I know what it's like to grieve and the waves will come and go. Therefore, I want others to know there's nothing wrong with that and it's okay to mourn, to express your highs and lows because that is part of the process. <3
Thursday, July 11, 2019
Saturday, July 6, 2019