A Personal Despair

My name is Peter Gibilisco, I am 62 years old, and today my life is heavily influenced by Friedreich’s Ataxia. It is a progressive condition that not only increasingly restricts physical movement as time goes on, but it does so in a way that is often unbearable. It has many other debilitating impacts, such as blindness and the horribly devastating effects of hallucinations. Hallucinations have, at times, transformed my life to a massive extent. Under their impact, I find myself believing that there will be practical outcomes that will result if I endure times of unbearable torture. Such times have been dominated by my physical and mental pain, which are also a side effect of my condition and of these hallucinations.  

Surely hallucinations can vary, but for me they mostly consist in memories of previous actions. My hallucinations began around the time I was 55 years old. It was for me very much a prescription into fun and games. They could become erotic pleasures which, for me, was still possible. The advice I received from the psychiatrist of the Crisis Assessment and Treatment Team (CATT) at that time reminded me that I was still responsible, the one in control of my hallucinations. This made me feel good, even like I had discovered something of value, but unfortunately nothing could be further from the truth.  

Back then, when I was 55 years old, I still had my eyesight, which could be part of the hallucinatory fun, and my sense of the pleasure I was having. But today, because of my blindness, the hallucinations lack what was a vital element and any pleasure is replaced by a sense of confusion. Everything is turned upside down. These days when I am hallucinating, any control I may exercise over the experience leads me into some truly weird paths, raising problems that defy any solution. I am left feeling very confused. To strive for answers to this situation that turns everything “upside down”, when I know that no probable solutions are available, makes me wonder what such life with such crazy experiences all about is. Am I a recipient of something special here, or what? For me, these times have only been the latest initiator of times of despair, leaving me in deep personal pain. 

   

The likelihood that I cannot communicate about this weird state of mind leaves me spiritually exhausted with no way of finding a solution. The erotic side of my hallucinating has now receded, and I no longer have the feelings I had when I was 55 years old. Being left with no mobility throws a further spanner into the works, confirming my suspicion that I am no longer a member of society. When these hallucinations began, the CATT’s advice was influenced by a medical assessment of Friedreich’s Ataxia. And it was hard to find suitable cases in Australia of people who, of similar age and similar medical problems, had experienced similar problems to what I am going through. I seem to have been left on my own with this even though I have this small capacity to compose what has been written above. 

However, today because of my blindness, a new spin has occurred from my hallucinations. When I was 55 years old, I used to be able to visualise with my hallucinations as they were not a hundred percent clear, and my hallucinating imagination was able to see others walk through objects around me. This gave me a weird feeling, and I was aware that it was something no one else could see. So how do I explain this to my support workers? Now taking it one step further, how do I explain the current situation that is with me being blind? A few times of late, I have been caught by my support workers saying, “please stop,” and this raises a very unbearable and almost impossible dilemma for me. 

My hallucinations are something that I have no control over, they are mentally and physically exhausting. However, this leaves me pondering a question. Initially imposed by the CATT team. They said I was in control of my own hallucinations; this allowed me to monitor the thought, to think about it. Can I really be that smart? Am I able to outsmart myself to such a degree? This thought leaves me truly bewildered. Am I left with only a plea for help, a prayer as it were, which is all that I can offer?  

Many thanks to my prolific ghost writer Bruce Wearne and to my special team of academic support workers Sarah, Dani, Amanda and Lina. 

A ONE SIZE FITS ALL POLICY DOESN’T FIT ANYONE

In seeking to treat all people with the same level of care and compassion, is it right to expect an equal outcome from all? 

Another possible submission to the Royal Commission

NOTE: This is another one of my short articles that, among other things, gives expression to some or other aspect of my condition and the difficulties I face in getting these matters corrected. In previous articles about my physiology my concern is to describe the kind of progressive reduction that comes about under a degenerative muscular condition such as Friedreich’s Ataxia. Here I focus upon a problem with technology and how the problem interacts with my disability. I hope these articles can be helpful to others undergoing similar circumstances and assist carers and family members to devise creative strategies to overcome the persistent frustrations (P.G)

The independence of Friedreich’s Ataxia and its relationship with deteriorating muscle spasms.

The following is from a study was published in The Journal of Stereotactic and Functional Neurosurgery:

“About 11-15% of patients with Friedreich’s Ataxia experience painful muscle spasms or muscle contractions, but little is known about the underlying processes that cause this complication.”

The Independence of Friedreich’s Ataxia and its Relationship to Scoliosis and Cardiomyopathy

August 7th 2017: Friedreich Ataxia’s News included the following definitions for Scoliosis and Heart disease—

“Scoliosis

Weakened core and leg muscles can lead to aggressive scoliosis or curvature of the spine in many patients.

Heart disease

Around three-quarters of people with Friedreich’s ataxia will develop some form of heart disease, usually hypertrophic cardiomyopathy which is when the heart muscle becomes thickened.”

Job on a Dunghill

My time in shared supported accommodation has had a significant impact on the deterioration of my disability. This attains to using the phrase ‘on a dunghill’ as a description of my life in a shared supported facility. This term of expression gives readers an idea of the ugly reality; of the helplessness, immobility, failure to speak and see. The loss of my control and dignity manifests as motivation to change the delivery of care in the disability sector.

Poster: 6 and a 1/2 Years on a Dunghill

Here is the poster my team and I have created for 6 and a 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation. I believe the book contributes immensely to the current debate surrounding the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Pushing on for Justice: A Book Review

This review is from two of my most intellectually admirable and honourable friends, Christina Irugalbandara and Bruce Wearne.

A possible submission to the Royal Commission

In light of the implementation of a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, I wish to shed light on the issues faced by individuals in shared supported accommodation facilities. In particular, it is important to note the standardising of support which, over time, ultimately leads to dangerous outcomes for residents. My experience in living in a shared home for the past eight years is testament to this, and I have written about it extensively in my latest book. The following are relevant excerpts from my book, rewritten under the context under the Royal Commission.

#RoyalCommissionNOW

In my book 6 & 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation, I have so eloquently expressed the need for 4 key elements in the disability sector: passion, empathy, altruism, and pragmatism. This is very clearly on display by Senator Jordon Steele-John in his speech linked below. I highly encourage everyone to take some time to watch this emotional, awe-inspiring speech.

Senator Jordon Steele-John also adds the following to his video:

I gave this speech last year in dedication to those members of my community who lost their lives due to violence, abuse and neglect.

Their voices remind us why we are fighting for justice. In their names we go forward.

#RoyalCommissionNOW