We can debate whether the patient is a part of the team (here) but we cannot debate that the patient is central to the team’s work, nor can we doubt that team and the patients must work together. David Wozny has already written on this site (here) and he is now giving his experience of being a patient and how a patient should contribute to their own progress. The words and thoughts are his. I (Derick Wade) have not edited it other than occasional spelling errors and commas.
Traumatic Brain Injury (TBI) – My Personal Introduction
This article is written by me in the context of being a survivor of severe Traumatic Brain Injury, from which I’ve made a satisfying and meaningful recovery. My intent here is to offer suggestions on how TBI patients (be they in a hospital or discharged home) can actively assist rehabilitation professionals in their efforts at helping them along. Since TBI is such a personal experience, I’m loathe to suggest that this guidance will certainly work for you. However, I can say with conviction that what I’ve articulated here worked for me. In the sections below I’ve given my perspective on trauma, with some suggestions which may hopefully stimulate positive thoughts along the lines of “I could try that.“
I experienced my TBI when aged 45 in July 2015, following a collision between my bicycle and a car in Nantwich, Cheshire; I hail from nearby Stoke-on-Trent. At this time, I was employed as an IT security consultant with the Metropolitan Police Service in London. A simplified chronology of events is:
- Neurosurgery, then comatose: four weeks
- Hospital rehabilitation (becoming familiar with the different me): ten weeks
- Home adjustment (simply getting through each day): forty weeks
- Vocational rehabilitation (gaining life purpose through volunteering roles): fifty weeks
- Normality (returning to work in July 2017): two years post-TBI
Your ‘Normal’ Reference Needs Re-Calibrating
It’s entirely understandable when you’re in the foggy mist of a brain injury, for you to imagine it is impossible to make a meaningful recovery from your current state. You may have looked in a mirror and recognised appearing to be physically the same, but you simply don’t feel like yourself anymore, i.e. not normal. This is a phrase that you’ll likely have heard said by people in various life situations, none of which are anywhere near as profound as what you’re experiencing.
The phrase “You don’t feel like yourself” has a particularly poignant resonance for a TBI survivor. It may accurately describe your feelings, while at the same time you recognise it being such an ambiguous statement that no one else will understand what you are conveying.
Your Situation isn’t Unique
You may envisage that your TBI is more severe than what other TBI patients in hospital are experiencing / have experienced. You’ve probably never encountered anyone who’s faced the trauma you’re going through, so your feelings are understandable. Your awareness is probably based upon only one person – yourself. However, you’ll be supported by doctors / nurses / consultants who deal with trauma survivors on an ongoing basis. While it’s unlikely that other patients have identical symptoms to your own, medical professionals will be familiar with many common themes and aspects of trauma patients, such that yours aren’t entirely uncommon to them.
Every trauma is subtly unique, as a consequence, your doctors are unlikely able to give you direct advice with a high degree of certainty. However, doctors will have seen their guidance work for other folk in similar situations, and you should therefore put your trust in them – they know what they’re talking about!
Sleep is Sensible
You mustn’t feel that having a short sleep in the middle of the day to help overcome tiredness is anything to be reluctant of or evidence of weakness – don’t deny yourself the luxury of a mid-day kip. I personally set a twenty-minute timer on my mobile phone, and find that it’s just enough to take away the tiredness edge.
Sleep is as important to well-being as diet or exercise, ignoring tiredness is entirely counterproductive. People who pay attention to their brain telling them that they need to shut their eyes are being smart.
Avoid Confrontation with Well-Meaning Folk
Many people will find it difficult to know how to empathise with you. When folk appear to downplay any negative feelings you may be articulating, it’s typically not through lacking sympathy; rather it’s more often because they simply don’t know the right thing to say. For example, if you suffer severe short-term memory problems and express frustration at how you’ve forgotten something, some people will try to empathise by expressing how they’re also forgetful. You know their own limitations are an order of magnitude lesser than your own, and it can be feel annoying to hear these comments. Please try to avoid contradicting their comments, learn to ‘let it go.’
Express Gratitude when it’s Due
Make a conscious effort to thank people who give encouragement or show appreciation of small efforts or achievements you make. You might feel that the matter being commented upon is relatively minor and not worthy of recognition, or comes across as patronising. In doing this, you may be making the mistake of comparing your new state with what you’d previously been able to do, rather than identifying progress you’re now making. It can be instinctive to give a spontaneous reply in which you’re dismissive of well intentioned comments, without considering the spirit in which they’re given.
Acceptance of Life Changes
You’re unlikely to recover to exactly as you were prior to your brain injury – learn to accept yourself. If you find it unavoidable to make comparisons of your current self to your past, do it to your immediate post-injury state or ailment, rather than pre-injury. It might help to view yourself as being on a recovery journey; you can’t confidently predict the destination of this journey, it’s helpful to try living in the now.
There’s a philosophical school of thought named stoicism, whose reasoning is to separate matters which you can influence, from external events which you can’t – i.e. not being distracted by things outside of your control. Try to focus on the things that you can still do, rather than be frustrated by what you can no longer do. The phrase “keep calm and carry on” could have been invented for stoics!
Learn to use Coping Strategies
When coping strategies are suggested by medical professionals, be prepared to give them a try – even the ones you’re convinced won’t help. It may be that out of five suggested coping strategies, only one will turn out to be useful – these are actually good odds. Some of your post-trauma deficiencies may take an awful long time to ‘heal’, and some may never do so. Coping strategies are a little like ‘cheats’ to aid you in skirting around some of your limitations. This approach betters getting bogged down with matters that’ll inevitably hinder your overall recovery journey. If you’re dismissive of recommendations and avoid being open-minded, you’re unlikely to find an elusive coping strategy which works for you.
Dealing with Ups and Downs
Recovery is non-linear, in simple terms that means not a straight line. You can have three good days followed by a rubbish day – it doesn’t mean that you are back at square one. Diary entries can be a good way to record progress, in which you may write a very short narrative followed by a well-being score. My own system used the following method of putting a numeric value against how I felt on a particular day – 1: Excellent, 2: Good, 3: Average, 4: Poor, 5: Dreadful. Diaries are especially helpful in identifying positive trends, and hopefully give reassurance that your inevitable periodic negative feelings are a blip.
A diary is also a useful tool when attending clinical appointments to review your progress and discuss your next steps. There’s a trauma-related app created by the UK based trauma organisation ‘AfterTrauma’, which you can download for Apple or Android mobile devices. It has an excellent system for easy logging of diary type entries for record keeping of your well-being. You can read about its functions and how you can download it here.
Trauma Resources on the World Wide Web
You needn’t feel alone in your trauma. There are numerous web sites offering relatable stories of trauma survivors, and providing much helpful advice. It’s highly recommended that you look into some of the web sites listed below, you’ll almost certainly find one which you identify with / relate to and want to delve deeper into its content.
- After Trauma: Supporting survivors and their families after trauma
- Brainline: All about brain injury and coping with it
- Headway: Supporting people with head injury, and their families
- Krysalis: Expert knowledge of catastrophic injury and neurological conditions
- The Samaritans: Helping people at a difficult time
Doctors are your Friends
It’s important that you try your hardest to engage with the medical professionals supporting you. Their job in supporting trauma survivors is extremely difficult, given that no two traumas are the same, and they can’t ‘get into your head’. Please help yourself by helping them – they are on your side and want to help you get better.