In the years that I have been a massage therapist I have been struck by various evident gaps. Most of my attention goes to others these days, but this one remains among my intentions to circle back to. If you're coming from my hypermobility pages, head injury is relevant to that too.
Here's my level of exposure: clients who arrive to work with me after a head injury describe relaying their symptoms in an emergency room, urgent care, or doctor's office and being turned away with odd looks and no answers to their questions and their anxieties. This is something I've seen a handful of times as a bodyworker and at least as many through friends. Hypermobile clients with less obvious but very real brain injuries via lesser mechanical events, through complications of native or acquired Chiari malformation, dural ruptures, seizure activity, or ongoing chemical threats such as mast cell activation syndrome are worth including in this category for my purposes. Just to juxtapose stories and thus better understand the human experience of them is about the reasonable range of my ambitions, and on the ambitious side I might hope to also piece together a bit of understanding of what that means for improving care and for the relevance of bodywork.
With respect to the odd looks, the problem is not that healthcare providers are unaware of the range of symptoms. Nor that there is too little commonality. I hear the same symptoms described all the time. So must they, seeing so many more patients fresh from head injuries than I do. I suspect that the problem is more that--in general--providers in mainstream healthcare are not resourced with the time to listen let alone respond thoroughly to early, grasping attempts to describe symptoms that fall outside of the immediately treatable, clinically identifiable conditions. The sequelae of head injury are compressed in training not to clinical subjectives but to technical language that leaves worlds between what a patient knows how to express, or worse to express at all, and what a doctor knows to ask or knows how to hear. So those who have been through head injuries are often just left with questions--and maybe newly with anxieties about whether they're on their own in their experience, whether saying what they're feeling is going to convince their doctors that they're crazy, unintelligent, anxious, or simply faking it.
It can be very difficult amidst the discomforts and new, often weighty circumstantial challenges after an injury to find good information on what to expect. It can be difficult to understand in the foreign universe of an injured body how to interpret even the most typical changes. The unfamiliarity of the body, the sensations, and the mind, previously an individual's most tangible and stable assets, breeds fear from which--living in that new body--there's never an escape. The inability to effectively discuss the matter and receive explanations from time-pressed providers breeds frustration and anxiety that compound the difficulties of the post-injury state.
By contrast, bodywork offers an hour or more of time to listen to the body and be listened to. This is often time as well to work through the difficulty of figuring out how to express the sensations of a radically transformed physical experience. I have thus heard many such stories at length. It is a privilege that bodyworkers are among few in healthcare to be able to provide the room in which to develop poetic language skills not often sought or exercised outside of the context of injury. The experiences of the body need to be expressed. It can't even be pretended for most that explanations or proper names for all the layers and facets of parts affected are immediately named. Pointing is helpful, but limited. Clients have to be willing to use the language they have to try to convey something new where they likely before took much for granted and did not seem to need words. Because of all this, I have often I have been in the position to reassure clients distressed by symptoms that were not relevant in the urgent care or ER setting that those symptoms are at least familiar from other stories of head injury. Just hearing of that commonality if not predictability in this new terrain they're facing has often elicited a sigh and a palpable sense of relief.
The effects of the unnerving experience of no longer knowing one's body is largely a gap to be acknowledged and addressed more regularly within medicine. Knowledgable bodywork is a valuable offering within the gap. An hour or more on the table gives a client time to exist sensitively and with support--experiencing, integrating, and soothing the alarms relating to radical newness of felt experience. Clients are witnessed, eased, and affirmed real-time through those readaptations. They may even have the chance to begin identifying the sensation of okayness again--some sense of familiarity, ease, or just acceptance within the new and often rapidly changing normal. Clients may have their first opportunity to describe intimately and in detail with a healthcare provider--or perhaps at all--the unfamiliar sensations and symptoms that came along with their injury. They may be able to begin connecting the sensations concretely with more awareness to the physical parts they arise from and to the physical triggers that influence them.
I can't pretend to explain much from my position as a bodyworker, but I have by now heard a lot of stories. I do have some simple theories on some common symptoms, and for what it's worth I'm willing to present some hypotheses that may help patients navigate the biomechanical components of head injury. But, from my point of view, one of the most valuable things I can offer out of my experience is the opportunity to hear from the experiences of others. I have often felt while hearing yet another story of the sense of isolation, discouragement, and fear of the days immediately following a head injury that it would be helpful to share with patients, loved ones, and providers a broad, simple, thorough resource on what people experience after head injury.
Bodywork too as a whole stands to improve by folding in greater awareness, training, and capacity to handle this particular corner of care, and I'm working to contribute to that by continuing to carefully document my work with clients who have experienced head injury.
Having seen all this even in my relatively limited experience--perhaps a dozen with recent head injuries, others with injuries further back--I have some projects in mind to mesh with the rest of my advocacy work. Coming soon, unfolding slowly: raw and compiled interviews on the experience of head injury, and perhaps some interpretive notes in the context of bodywork.
While there are a lot of organizations out there that look like they're probably great, for the moment I'm only listing a few that are less obvious resources for this kind of thing but relevant, all of which I've interacted with or others in my network have found helpful:
American Autonomic Society--head injuries often involve neck injuries, neck injuries alone often instigate autonomic dysfunction. Many infective agents and toxins can impair autonomic controls.
Spinal CSF Leak--this organization advocates around cranial CSF leaks as well as spinal, relevant for many with head injury as well as separately or together with hypermobility.
International Association of Healthcare Practitioners--craniosacral therapy, neural manipulation, vascular manipulation, and visceral manipulation all have particular value with nervous system injuries.
Musculoskeletal Specialists--this training organization and bodywork clinic in Los Alamos, NM performs work with special value for conditions affecting the nervous system.