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28 Oct 2020

Living alongside Covid – The Strategy

Two individuals living with two separate diagnoses. One bond, one marriage.

The disorders that co-exist here are paranoid schizophrenia, (exacerbated by a multitude of physical illnesses, including Crohn’s disease) and early onset Alzheimer’s. Their respective symptoms are varied, cruel, and profuse. The former marked by persecutory voices, visions and toxic smells. These, combined with thought disorders, and intense paranoia, mean for example, that tasks such as handling boiling water, shaving and knives need supervision.

In my case Crohn’s disease causes incontinence, crippling pain, blockages and acute diarrhoea, and the inevitable resections, cutting away large parts of the small bowel, and intestines. Alzheimer’s displays a degenerative breakdown of memory, cognitive functioning, bodily functions and a lack of spacial awareness. The consequences of which necessitate crucial input from a team of consultants, nurses, doctors and vital day-to-day support from carers. Equally, our wonderful family and friends are much valued. Without this supportive network, our lives would fall apart.

Love of the arts

In spite of the consequences of the above, our lives together are worthwhile and precious to us both. For us the pivotal aspects of developing an approach to manage these illnesses during Covid lockdown are concentrated upon a mutual love of the arts. Self-expression is a key component. To be able to convey the myriad complexities contained within is vital.

I have been blessed with the gift of musical composition. I experience intense periods of auditory stimulation, culminating in a profusion of chord structures, rhythmic patterns, varied key and time changes, combined with ethereal harmonies and melodies. From these internal seeds, there is a compulsion to make all these elements tangible.

The central part of the process is to bring this all into a form that can be appreciated by others. Thanks to the kindness and generosity of PINK FLOYD, I have been able to set up a studio facility at home. This has proved to be a creative lifeline, saving me from inevitable self-destruction. Through their benevolence and belief in me, my musical adventures have been transformed to the extent that I have been able to support the leading mental health charity, SANE. They provide crucial support to anyone with mental health problems and offer comprehensive phone advice.

Achieving balance

The process of recording, mixing, mastering and producing my soundscapes is complex and draining. An obsessive approach is vital, so replicating the sonic pieces that originate in my head. Sometimes the compositions work smoothly, but this is rare. Mostly it is demanding and exhausting.

I play keyboards, bass and guitar, and programme rhythms, so projecting a complete body of structured work. The magnitude of which demands a palpable outlet, so dispersing the intensity and pressure within my head. These creatively fertile periods are inevitably followed by protracted fallow patches. A crash from the peaks, to an abyss of self-doubt and overwhelming paranoia. Where the psychosis proliferates with vast and agonising horror. The aim is to attempt to achieve some semblance of balance. A lengthy journey, the ultimate cost of possessing a gift from God.

For my dear wife, her creative periods are comparatively consistent. Her gift is to produce the most exquisite sketches, which originated from observational still lifes, initially based upon floral arrangements. They possess a light, almost naive, lyrical quality, capturing the essence of nature. Their detail, is by any standards, extraordinary.

As her dementia has taken more of a hold, her imagery has transformed into symbols of recollection, stylised form and line exploring the infinite aspects of petal, leaf and rich foliage. She is utterly, completely focused, with nothing to disturb this incredible skill. As a constant, my wife is absorbed by the application of pen and brush, so emulating the startling beauty that resides within her own sub-conscious.

What she creates, is staggeringly, mesmerisingly, drenched in wonder and has stimulated crucial parts of her brain. This in turn has enabled her to take a more active part in conversations than before, and to access her emotional responses to music and culture.

Facing new challenges

The harsh, demanding aspects of our respective diagnoses bring new challenges. When combined with the chronic pain of Crohn’s disease, our symbiotic relationship comes to the fore. Despite the deterioration in both our mental and physical health, we remain resolute in our care for each other, even when the practical realities are draining and a great test.

Communication is vital, to express our needs as the day evolves into the night. To have one’s pattern of sleep disturbed by night terrors, voices, sedation through the side-effects of powerful anti-psychotics and incontinence is a real test. However, our shared compassion for each other helps to pull us through, even when the constant lack of sleep provokes violent mood swings.

We literally hold onto each other, for the sake of survival. We can, at times, feel that we are on the edge of a precipice, because the elements are so severe that they threaten to tear us apart.

Despite all that comes to test us, we appreciate that we are the fortunate ones, for we have each other, despite the trials. For those in total isolation, ‘the cross is harder to bear’. Screaming at empty walls, surrounded by horrific images. Their loneliness is beyond comprehension, as they endeavour to grapple with the concept of survival. Desperately, desperately sad. To be stripped of vocation and income, forced into poverty, as the overwhelmed care services struggle to cope.

For those who dare to venture out, formerly connected communities have become ghost towns, as businesses collapse and society fragments. Those contained within are having to deal with uncharted territories, bringing with it unprecedented stresses and heightened anxiety.

Maintaining a structured creative discipline

However, maybe aspects of our approach can be applied. To maintain a structured creative discipline, maybe to document their individual experience, to channel despair into constructive realms. To take the opportunity to learn new crafts, skills, and mental and physical challenges.

If there is love in life, then learn to fully appreciate it. To use faith as a spiritual armour, to bolster a residual belief that the cruel reality can be transcended. Not to be overwhelmed by the pain, but rather prepare to confront it. The beauty of language is available to most, the ability to train the body also. To build upon the misery and loneliness, rather than be submerged by it.

As I prepare at night, for the trials that will bring, and after the relentless attack of the daylight hours, I simply hold onto the inspiring resilience of the human spirit, which helps us to survive.

Try it, you may be surprised.

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