10.04.2014

Cluster Headache Art Film Project

I recently made an amateur documentary that narrates my experience of living with migraine and cluster headache, and how I have learned to manage this.

This video is embedded at the end of this post.  It challenges the viewer to spend an entire hour in the space of complex and confusing discomfort that I experience for months at a time when in a headache cycle.

It was made a few minutes at a time, over the course of several weeks, while I was experiencing a headache cycle.  It was produced with secondhand equipment, free software, and youtube's experimental cloud based video editor.  The main points it attempts to convey are:

- Migraine and cluster headache are serious, complex conditions about which very little is understood.
- The support necessary for a sufferer of conditions like these is not easy to access in our society, but can be pieced together cooperatively and creatively.
- The social and financial dimensions of conditions like cluster headache can sometimes prove more challenging to manage than the physical conditions themselves.
- Common assumptions about well being are harmful when inappropriately applied.
- Art and technology can be useful and accessible tools for managing illness.
- Our society needs to do a better job of taking care of its members. Better communication around well being and money is a prerequisite for this. My actual life combines with a concern for those less fortunate than myself to motivate me to prioritize this.

Because of this video's extremely low production values, it is nearly impossible for a viewer to read, understand, and make sense of the various documents that are mentioned and visually referenced throughout.

Here is a clear presentation of these references:

1.) The cards:






2.) Web links:

The Bio-psycho-social paradigm
The survey
The hypothalamus on wikipedia
Cluster Headache Awareness Project
Readsy! made by Akash Jain
Promising experimental research, including medication based and hypothalamus stimulation based.

3.) The recommendation letter from my supportive friend and colleague Oliver Markley, PhD. This was mentioned to illustrate:

 - One of the ways that I solve the problem of being unable to secure more traditional credentials.
 - That my professional thinking work is recognized to be of high quality when my capacities are not diminished.

4.) The needs matrix that I visualize to clarify my action plan for identifying and obtaining what I need in the most balanced way possible. I adapted Manfred Max Neef's 'Human Scale Development' work for this purpose (note: in the video, I state that I believe that Maslow did not understand very much. This is an unintentional and unreasonably harsh oversimplification of my perspective.):
5.) The image of my eyes that I used to look at the degree of facial distortion produced when my trigeminal nerve becomes overactive. It was surprising for me to learn how minor this distortion appears to be:
Here is the actual video.

2 comments:

  1. After experiencing this painful video, I was moved to provide Mark some financial help at a level I could afford.
    In my experience he is a truly gifted being whose life and work deserves support. -Oliver Markley

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