The journey from 'fixing life' to 'living my new life' post-trauma

Innovation in the treatment of massive trauma represents one the remarkable leaps forward in modern day acute healthcare. We have, in our country at least, the knowledge, skills and technology to enable people to survive what many would have thought unsurvivable no more than two or three decades ago. Like many other individuals from both the civilian and military population, I have directly benefited from these innovations.

I would suggest the next biggest challenge for healthcare resides in the ‘burden of recovery’ from significant trauma.

People recover quite well most of the time. As human beings we have the ability to adapt and survive the most tremendous adversity. We call it resiliency. It appears with increasing evidence that survivors of significant trauma rarely transition through the Kubler-Ross model of loss and grief, see criticisms for example. Survivors more likely describe recovery as walking a rocky road or a traversing a mountain ridge. Recovery becomes a long term prospect with its up and downs, with its fair share of success and setbacks.

This description of recovery as a journey differs from the simple linear models that health care professionals (HCP's) and survivors can get caught up with when thinking about recovery. I don't think of my self as having recovered, even today after almost 14 years after my accident. Rather I think of myself in recovery. A very different state of mind and way of being to the one I enjoyed before my accident.

One hears of the impending 'cliff' that survivors experience once they return home. The cliff representing the emotional and mental health of the individual. The fall from the cliff can happen quite quickly or it can take a indeterminable length of time to unfold. Some people bounce at the bottom, get back up and get on with their lives. For other people they appear to get stuck in an endless freefall for the rest of their lives. For yet others they fall, bounce, get up, fall again, and so it goes on.

I came up with a creative jigsaw puzzle analogy of recovery and explored this with the clinical psychologist that I worked with in the first twelve months after my accident. I suggested that up until my accident I had carefully constructed my life like a jigsaw puzzle, a piece at a time. The different pieces comprised elements out of my control - parents, time and place of birth, etc, along with more and more elements I could control, such as the choices and decisions I had made throughout my life up to the time of my accident.

My accident happens, and it throws the whole puzzle into the air. As I begin to pick up the pieces from my original puzzle I realise on closer inspection that the pieces no longer look the same as before. I also find that the pieces fit together in different ways too and that I don't have all the pieces. In essence I feel like I have to start to build my life up all over again.

Putting your life back together post-trauma is like a jigsaw puzzle where the pieces "don't look the same as before"

This can present survivors with the opportunity for the re-evaluation of ones life priorities up to this point and lead to the reconfiguration of ones identity being centred around a more positive set of values. More often than not you'll hear people say that they know what's importnat now. They live much more in the moment and place greater emphasis on close supportive personal relationships over other things such as career, money, and the other trappings of striving for affluence.

The pieces of the jigsaw represent many of the complex interconnecting factors that can support or hinder the burden of recovery. Factors include ones character and value base, health literacy, access to resources and support, level of love and care that family and friends can offer, level of income to support daily living needs (doesn't have to be via employment), capital assets one can draw upon, location (the postcode lottery a very potent barrier or enabler), etc. All these and more play their role.

​So far, so complex!​

So, what can HCP's, survivors and carers do when it comes to managing the complexity of recovery?

It goes without saying that at the acute stage of care patients have little or no autonomy or agency about what happens and why. I'm not a surgeon or nurse practitioner after all. I could not have physically saved my life nor have performed the multiple long surgeries I underwent. However, patients can and do play a significant role in their recovery even at this critical stage.

A couple of personal examples:

While in my hospital bed, my nurse practitioner, Elaine (name changed), allowed me to demonstrate to student doctors and nurses the correct way to dress my residual limb with a stump bandage and other minor procedures too. 

I remember vividly how the lead consultant of my care hugged me when I eventually went home. He said how glad he was to see me alive and doing so well. He then said that I had proved one of the most important members of his team and because of that I had survived what most people at the time thought unsurvivable. He thanked me for helping another patient who had come into the HDU screaming and swearing blue murder at the healthcare team. He'd shattered both legs in a nasty high fall. The guy created so much upset and proved so uncooperative that he had to be removed to another part of the hospital so as not to disturb other patients.

Six or seven weeks later when I began to mobilise in a wheelchair my consultant asked if I remembered the man? He went on to say that the guy was active and fit like me but continued to prove obstructive and unwilling to work with the healthcare team. He asked if I would have a patient to patient chat with him. I did and over the course of an afternoon the gentleman in question came round to the idea that the healthcare team had his best interests at heart. He began to accept the treatment options and he started his journey of recovery.

I offer these personal examples to demonstrate that even at the acute stage patients can and do exercise agency in their recovery. I witnessed this time and time again in fellow patients to differing degrees. Patient agency can prove an aid or a barrier to their recovery. It can prove a blessing or a source of frustration for HCP's. Patient agency becomes even more important once they become a person and return home. More often than not contact with HCP's goes from lots while in hospital to very infrequent once in the community. We pretty much have to self-manage from the get go and muddle along with occasional, sometimes helpful input from HCP's from time to time.

Finding professional support becomes a bewildering task of neogiating obtuse referral systems and undergoing through short term interventions that at best offer a sticking plaster approach to feeling wholly unsatisfactory. Organising ones time, energy and commitments to meet these appointments, if one has the luck of getting through the door in the first place, becames an onerous task. It's a big ask. Rarely do the HCP's in community settings come out to see you. Instead you have to find and go to them, wherever they locate themselves. Another barrier then in the journey of recovery.

Little wonder then that patients find it difficult to adhere to medication and self-care regimes. Little wonder that patients drift out of services and no one knows what becomes of them. Family and friends, if available and willing, more often than not take up the task of primary care giving. Some do an admirable job, others plod on as best they can but can begin to suffer themselves. The task of caring becomes another part of the burden of recovery too. One rarely recognised or acknowledged let alone supported.

As patients become people again and transition home the task of recovery changes from one of pure physical survival, to one of how do I go on from here? You see the difference. Recovery, life, becomes a question for the survivor. For all HCP's, but especially those in acute settings, this presents the greatest challenge. While in hospital the task of the healthcare team has the focused priority of fixing and making better, and boy have they got good at this as I said above about the survivability of significant trauma.From

Yet when it comes to the business of getting on with life both the healthcare team (acute and community) and patients approach the task of recovery from a fix it perspective. But how do you fix a life? One lives a life. And I think there in lies the crux of the problem for both HCP's and survivors. We, patients and HCP's, co-create and co-produce the discourse of health and healthcare from this perspective - if only we had enough resources and sufficient time then we could fix this broken life. I wonder as I have in some of my blog posts, whether we need a paradigm shift from how can we fix this life to asking how will you (the survivor) now go on to live your life?

What if, for example, all members of the acute healthcare team could learn and employ some of the communication methods from coaching to aid patient and carer agency and hence promote recovery? It requires some nuance to do this well. For example not all people respond well to goal setting. One has to find out what motivates an individual and their willingness to take on the task of recovery. What motivates one person doesn't motivate another. I would describe myself as a process or task oriented person rather than goal oriented person. Rather than people having one or the other orientations I would suggest we have preferences that place us on a spectrum. We utilise both process and goal orientations as necessary to fit the context of the task.

W​hat if all members of the the healthcare team in acute and community settings made use of brief intervention techniques to set realistic goals where appropriate and explore those factors that support recovery with solution brief therapy approaches.

What if survivors, as you appear to be doing at Barts, have the opportunity to get involved in meaningful co-designed and co-produced service development, and in peer support initiatives (mind you this requires careful coordination and management) Involvement in itself, as we find at the Patient | Carer Community at the University of Leeds, has its own intrinsic benefits for recovery without it having an explicit focus on this as a benefit. ​

What if survivors have opportunities to learn about the challenges of long term recovery - living with chronic pain springs to mind as a real challenge to participation in life. Health literacy and learning about ones body can become immensely rewarding and supportive of the recovery process. Knowledge is power after all. For understanding pain I like the following from Lorimer Moseley and his Pain Explained series of talks in particular and this short explaination of chronic pain too.

In essence I'm suggesting HCP's and patient/survivors of significant trauma have a change of emphasis from the we've fixed the body and saved your life, now get on with it. To one of, we've fixed your body and saved your life - now, how can we support you to live your life with the highest quality possible. The life saving aspect of acute care represents the spring board from which you, the survivor, dive back into life, it seems that we forget to ask whether that individual has the skills to swim. Some drown, some just manage to keep their heads above water, some scull around in circles, some swim and begin to explore the potential before them.

What if both HCP's and survivors could explore the language of recovery together. Does the language we use in recovery, as some linguists and psychologists suggest, shape and define how we go on to live our lives?n short I think we need patients/carers and HCP's talking and working together in partnership to explore this challenging area of recovery in the post-acute stage when all of a sudden the enormity of the task of living hits home.


Philip Sheridan
Facilitator | Mentor | Poet & Writer
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