Help Ben on his road to recovery

After a three year struggle with a mystery illness Ben has had a breakthrough diagnosis of epilepsy, however, it has become increasingly clear that his case is more complex than anyone originally thought, and he has pursued private avenues to obtain the most effective specialist care available. This is his story. ______________________________________________________________________________

For the first half of his life Ben and his family had been constantly traversing the globe, but by 2012 he hadn't moved in more than a decade. Longing to see the world again, he made an uncharacteristically adventurous move early that year - relocating to Melbourne to pursue his line of work as a chef, but almost before his feet hit the ground he was blindsided by a tragic accident and life as he'd known it was changed forever. The local doctors were at a loss as to what he was experiencing and with his health rapidly deteriorating, he had little choice to but to board the next available flight home. Moving in with his parents, he then began to wade through month after month, seen by one health professional after another - with none of them being able to provide an adequate explanation, much less treatment.

It wasn't until the end of 2012 that Ben finally began to stabilise into his new existence. During that time that he'd made connections with a remarkable group of people living just north of Wellington, and with his carefully laid plans for the future now utterly shattered, they invited him to come be a part of their community - to be supported by those who had travelled similarly dark paths, but also to offer from his own gifts and abilities, a contribution to a community that was supporting many others, all with enormous challenges of their own. Despite the unrelenting struggle with his mystery illness, Ben regards the two years spent there as pivotally life-changing and he is thankful for the deep bonds forged with the people of that community (he was like an uncle to the two boys in the photo above, whose families he lived alongside). Nevertheless, his health continued to decline and by the end of 2014 it was time to move on.

Three years on and still no answers, but an unrelated trip to the hospital made for a chance meeting with a new Neurologist. Listening to Ben's history he promptly said that he suspected Ben had Temporal Lobe Epilepsy (TLE), and a simple EEG test confirmed it. If you are used to thinking of epilepsy as synonymous with "fitting", well TLE is quite different. Temporal lobe seizures can produce a huge variation of experiences, some of which are unimaginably potent and many people find their seizures are indescribably excruciating. Unfortunately, Ben's epilepsy is complicated by several other persistent (and at times severe) psychiatric elements including - depression, acute anxiety and derealisation.

Depression we needn't touch on, except to say that at its worst - it is truly horrendous, even life threatening. For those who aren't familiar with acute anxiety - as Andrew Solomon puts it, it's the feeling you have "when you're walking and you trip or slip and the ground is rushing up at you, except instead of lasting for half a second the way that does… it's a sensation of being afraid all the time, but not even knowing, what it is that you're afraid of". Derealisation, Ben describes as "the surreal, but very literal experience of my life as a nightmare - that I cannot wake up from". Every doctor that Ben has seen has remarked that his condition is particularly complex. This makes finding effective treatment problematic - some medications may help in one area, but exacerbate and destabilize another, some medications have extremely negative side effects, as he's discovered. Finding the right cocktail may take a while, and remains elusive at the moment.

Obviously, none of this has been effectively managed nor adequately engaged with in the three years prior - neither his seizures, nor psychiatric symptoms. During that time he has seen literally dozens of medical professionals and been unable to work. In recent months Ben's health continued to decline to the point of necessitating emergency contact with CAT team professionals on multiple occasions, and visits to the emergency department. During this time he has had (possible) neurological activity that has still not been accounted for, with seizure-like episodes lasting up to an hour or more at times.

As hard as it has been, thanks to the efforts and the attention of doctors like the Neurologist, we are beginning to piece together what is going on. The experience of the public health system here in NZ has been a mixed bag. Though more recently Ben has been fortunate to have been seen by several excellent physicians, they simply haven't had the resources available to offer Ben the consistency or quality of care that he requires. As such, he has had to pursue the majority of his current care via private avenues. The Psychiatrist that he still sees through the public service has been encouraging of his proactive attitude toward his recovery, and is happy with how much progress he has shown in recent weeks.

Ben has been referred to a clinical Psychologist for targeted psychotherapy. Given the complexity of his condition he has also been referred to a Neuro-Psychiatrist (an exclusive field of specialist care navigating both neurological and psychiatric elements). The time frame for 'treatment' is still uncertain - coming on or off medications can be a lengthy process, and for therapy to be effective, it cannot be too rushed. However, we are confident that Ben is on the road to recovery, and anticipate that his health will continue to improve, especially now that he is under consistent specialist care.

Ben still harbours dreams of traveling, maybe even to revisit some of the same places he grew up. Though this isn't the kind of journey that he had in mind setting out for adventure in early 2012, nevertheless, these recent years have been a period of deep personal transformation and have unearthed for him "a desire to support people who struggle, especially with conditions such as epilepsy and mental illness. I would love to be well enough to pursue future study in a field that might offer to others - the professional and compassionate care I've been fortunate enough to receive myself. This is the kind of thing you hear about in the stories of 'other' people - I never imagined that I would become one of them".

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Phew! Congratulations and thank you for making it this far.

• In his first month of treatment, Ben's fees have totaled $2000. However, as he begins to make progress, we expect his monthly expenditure should drop to around half of that.

• If you would like to support Ben financially as a one-off donation, he would be very grateful. If you would rather support him in an on-going capacity, he would be most appreciative.

• Questions are welcome through the Q&A section of this page, but If you would like to contact Ben directly, please message him via the little facebook link on the right-hand side of this page (under the Donor Confidence Key section).

• For another personal account of an experience of living with Temporal Lobe Epilepsy we highly recommend reading Karen Armstrong's autobiography, The Spiral Staircase.

• The community Ben was involved with, Ngatiawa River Monastery, is part of a parent volunteer organisation called Urban Vision - who do amazing support, advocacy and community development work (and much, much more besides) in the greater Wellington area, as well as suburbs in Auckland and Hamilton.