When Toni Bernhard became ill during a trip to Paris in May 2001 she could hardly have known the immense impact that her emerging health problems would end up having on her life.
Today, she is an award-winning author of three books, ‘How to be Sick’, ‘How to Wake Up’ and her current title ‘How to Live Well With Chronic Pain and Illness’ – which also deals with the subject of illness in a general way.
In ‘How to Live Well’, Toni talks openly and honestly about her own debilitating illness – one which continues to limit her lifestyle choices in a number of ways, and the impact that it has had on her life as well as those who know her.
The Challenge of Illness
Under normal circumstances we tend to view illness as a transitory condition – one which we expect our natural bodily systems to fix by redressing and rebalancing our nature healing processes over time.
Unless we are hospitalized for some reason, we do tend to expect to be back up in our feet, running around living our daily lives in just a couple of weeks at most.
Not so the case for Toni whose seemingly harmless viral infection ended up damaging her own immune system and led her into a chronic illness which has left her housebound a great deal of the time and very often also confined to her bed.
The self-evident challenge in her difficult situation is that of looking after herself the best way she can whilst at the same time reducing those influences that exacerbate her condition as much as possible.
What is not so obvious, nor is it quite so straight-forward to deal with, are the host of other unique subsidiary factors that long-term illness brings with it.
Dealing With Life
In ‘How to Live Well’ Toni introduces her reader – even at a very early stage in her book, to some of the more significant external challenges that make up her day-to-day experiences.
The first of these looks at the sort of attitudes, general responses and varying levels of compassion and understanding being offered to her by friends, family and strangers; who are perhaps not so acquainted with her condition and confused by her actions.
One would automatically assume that the level of care and support that she receives is fairly consistent but in her book Toni explains that this is not quite the case.
Very often a prolonged, difficult and heart-wrenching process has to be undertaken in order to educate and train others so that they can learn how best to nurture, care and support her in the most beneficial of ways .
Long Term Effects
Toni has divided her book up into sections to make it easier to understand the issues involved.
In these she explores eight key elements or influences that directly impact upon the quality of life that anyone with physical disabilities can expect to have to deal with.
Some of these, such as the process of educating others in care and kindness, relate to the deep sense of personal responsibility that those suffering from illness so often are forced to take on board.
Other approaches, such as those focussed upon in the second part of her book, directly consider the actual experience of being so ill for so much of the time and for such prolonged periods.
It is at this point that Toni’s Buddhist leanings and beliefs form an essential part of the personal philosophy that she has developed and which helps her deal with her ill-health.
One of these in particular is the core Buddhist practice of Mindfulness which Toni believes can aid in the process of alleviating physical suffering by easing mental suffering first.
In this regard she considers such issues as the impact that stress has upon the physical body, the thought patterns that we cultivate nurture within ourselves as well as the beneficial effect that meditation can have on our bodily functions.
As toni makes clear, constant worry and anxiety both form an inevitable pathway to illness and in part three of her book she digs deeper into the inner process of self-analysis and even self-criticism can play in the daily tides of comfort and distress.
Other factors that play a part are anger and frustration – in fact any natural emotional response that tends to become amplified in our own minds if not dealt with properly.
Unless you are in the position of having to either cope with a debilitating condition, or care full-time for someone who has, then certain aspects related to ill-healthy will be unfamiliar to you.
As Toni Bernhard herself puts it
One of the experiences that caught me by surprise when I got sick was the realization that I’d taken up residence in a parallel universe I hadn’t even known existed: the invisible world of the chronically ill.
Issues that directly emerge from the sense of isolation that living in this parallel universe brings include a deep sense of guilt, embarrassment, a fear of being misunderstood and the challenge of connecting to the wider world through a veil of one’s ailment.
Some of the subjects also covered include further education, romantic relationships and the worry over having children and how their lives will become impacted by your own issues.
In addition the book also focusses upon the social challenges that young people face whilst dealing with own their long-term health problems.
In the closing part of her book Toni Bernhard invites those readers who also suffer from physical disabilities and health challenges to deal with their limited lives armed with a deep sense of pragmatism.
This includes not romanticising a pre-illness past – a time when things appeared to have been rosier, nor to mourn the loss of old relationships or to accumulate internal resentments.
In fact, despite the difficulties and challenges that need to be faced the author exhorts us to slow down and savour life despite its problems.
Doing so may offer you the opportunity to evaluate your life in a completely different way – and who knows, even to write a book about your personal experiences as a way of helping other.
Our Review of ‘How to Live Well’ by Toni Bernhard
From the amount of sleep that an ill person can expect to attain through to the quality of love received from care-givers; from the deep sense of loneliness and isolation that illness brings through to feelings of self-blame that arise from not being able to join in with group and family activities, ‘How to Live Well’ offers its reader a wide range of emotional dramas, fights, challenges and issues that confront the physically disabled.
The physical body is an amazing machine but sometimes it can, and does, go badly wrong – even to the extent where it limits our ability to further our personal and professional dreams and ultimately to stopping us from engaging fully with, society, culture and community.
This is the point at which so many people experience the deep sense of isolation that, in so many cases, are worse than the actual disability itself.
In ‘How to Live Well’ Toni Bernhard has unceremoniously, dramatically and without reservation torn down that seemingly impervious veil that currently exists between the chronically ill and the world that they inhabit.
It is a book that through its sheer power of expression, its dynamic interchange of ideas and sheer bloody honesty successfully bulldozes down so many walls formed through ignorance, custom and taboo regarding illness and disability.
In doing so It generates mega-watts of positive optimism for those, through no fault of their own, suffer within the trap of ignorance regarding illness that most of society are steeped in.
If this book served no other purpose than to lay out in helpful and convenient ways the many practical issues that a physically challenged person has to cope with then it would have performed a valuable service.
However, ‘How to Be Well’ vastly surpasses this function for it also teaches the world one very important lesson which is this.
Through illness, disability and the inevitable sense of deep isolation that this creates ,the long-time sufferer, his/her carer and all members of the family who choose to engage with the process, are offered the chance to understand both themselves and the human considerably more deeply than would otherwise be possible under more ‘ normal’ conditions.
Thus, this is a book about a truly authentic form of trans-personal psychology – and for that reason it holds a greater intrinsic value and authenticity than a hundred so-called ‘self-development books’ on the subject of alternative health currently available on the market today.
It is an epic read penned by a brave and resolute woman who through the challenges of her illness has produced something of immense value for the world.
I cannot recommend it highly enough!
From the heart of Toni Bernhard’s deepening and hugely challenging health conditions emerges a book that not only inspires, educates and informs but ultimately also staggers the senses. Its wisdom, insight and brave honesty will go a long way towards changing our currently fixed attitudes towards the physically disabled and those who are charged with the honour of caring for them on a daily basis.