[BLOG POST] Comparison, the Thief of Joy

by Veronique Theberge

Comparison between people, aptitudes, skills, etc is a concept that most of us would be familiar with. Of late, I’ve been spending time assessing how the ongoing comparison between the old and new me since encephalitis and acquired brain injury may be affecting my overall happiness and recovery.

The changes in lifestyle, in physical and cognitive abilities and in energy levels has been pretty drastic and to be perfectly honest quite a bumpy ride too. Comparison is no longer between what others can achieve versus where I stand, but between where I used to sit versus what my new reality allows for now. On more than one occasion, this has been really disheartening. It has affected all spheres of my life and comparison reached an all time high on a personal, professional and social level.

Has comparison between and old me and new me been a thief of joy? Absolutely.

As I’m taking a step back to write this blog, I’m thinking about some of the words that I used, about comparisons that I have made between the old and new me, and I can see clear as day how so many of those comparisons would have been harmful. I can see how they would have detracted me from achieving a state of happiness. I can say in all honesty that comparison between the old and new me has triggered several negative thoughts.

Social comparison

Attending social events following a brain injury is not an easy undertaking and I have avoided a fair share of them over the years. One would think that by not attending an event that there would be less ground for comparison, but I found that to be quite the opposite. In fact, I found it has heightened social comparison.

FOMO is a real thing and digital technologies do not let you get away with much unseen unfortunately. It has often made me aware of the immense gap between the number & type of event that I can manage compared to everyone else. When I have put myself out there, it’s often highlighted my newly acquired challenges and the ways in which I have adapt in order to survive the simplest of gathering. Those few examples describe really well how social comparison may have had a negative impact on my overall recovery and wellbeing.

Professional comparison

In the early days of recovery I was extremely lucky to have the support of a stellar employer. They were amazing! We settled on a return to work schedule that catered for my health challenges and we amended the plan as recovery went on. However, limited time in the office and reduced cognitive abilities meant that in order to see some projects come to fruition, some tasks and responsibilities had to be dispatched amongst other colleagues. I understood the reasoning for this, but it felt unfair. It felt unfair that a brain inflammation and its resulting brain injury robbed me of some of my professional aspirations. It highlighted, once again, some of my shortfalls. I started perceiving injustice in my professional life and the culprit was for the most part the new me and its ongoing limitations. I remember all too well comparing my cognitive aptitudes, productivity and the state of my executive functioning between the old and new me…and for the most part, I did not like the state of it one bit!

Personal comparison

With managing limitations left and right and learning to live life as the new me, it didn’t take long for the negative to outweigh the positive between the old and new me. I was more times than not pretty disappointed with the massively scaled down version of the old me. I’ll go as far as saying that at times, I hated this new me. Unsurprisingly, this sort of internal dialogue and belief lead me to think that I was failing all the times. It felt as though I was falling short on so many fronts. Looking back, I realise how harsh and unkind I was to this new version of me which was in reality working harder than ever.

How could the reflection of the person in the mirror be the same yet FEEL so different? Comparison was truly the thief of joy but at the centre of it all were two different versions of ME that I could simply not reconcile.

As I’m reading and reviewing this blog , I so wish that I could have told that person in the mirror something – ANYTHING – to have her believe that things will be ok in the end. That rediscovering and healing myself will happen, but that it will take time and occur in many shapes and sizes. The thing is, I’m not sure that I would have believed then what I know now anyway.

If you are stuck in this exact phase of your recovery, I won’t sit here pretending that getting to know and appreciate the new you will be easy. I get you, I understand the frustrations, I understand the complexity of the challenges that you are faced with and all their associated emotions. I truly feel for you and above all, I wish I had a magic wand to fast track this process ten-fold. I think it’s a journey and that at some stage we come to realise that we have to trust the process.

Tips to manage comparisons

Below are a few ideas that I’ve come across in an article from Psychology Today* that I’m thinking may help you manage some of the harmful comparisons between the old and new version of yourself following brain injury:

1. Recognize that you’re likely using an unrealistic target when evaluating yourself and adjust accordingly.

2. Consider what you’re trying to achieve when making a comparison.

3. If comparisons have you feeling down, spend some time thinking about positives: how much a skill has improved over time, how much worse a situation could be than it is in reality, or others who may see you as a role model right now.

We have to remember that comparisons can go both ways. Finding ways to use comparisons in a positive way can actually be helpful. Again, I’m not saying that it’s easy, but with the right mindset, we can gradually start turning things around.

Final words on comparison

So next time when I ask myself if comparison between and old me and new me has been a thief of joy, I think I’ll tweak my answer in the following way…Yes of some of my joys, but time has been my ally. As the new me started finding its place and purpose, I discovered so much about myself and this definitely translated into growth that would have never come about otherwise. Trust that somewhere along the way, you will start embracing the new you and that comparisons between the old and new you will fade away.

*https://www.psychologytoday.com/nz/blog/multiple-choice/201903/is-comparison-really-the-thief-joy

Source

[ARTICLE] Finding a new balance in life: a qualitative study on perceived long-term needs of people with acquired brain injury and partners – Full Text

ABSTRACT

Objective: Although the long-term consequences of acquired brain injury are frequent and diverse, care and support over the longer term is an under-addressed issue. This study aims to identify the perceived needs of people with acquired brain injury and their partners.

Methods: Interviews with four focus groups of people with brain injury (n = 17) and three partner groups (n = 19) were audio- and videotaped, transcribed verbatim and analyzed using inductive content analysis.

Results: Needs were perceived on the intrapersonal, social, healthcare and societal levels, focusing on three themes: 1) Adaptation to changes, including awareness of consequences, acceptance, role changes and dealing with these; 2) Understanding from relatives/friends, professionals, institutions and society; 3) Timely, individualized care, involving information, transition to home, searching for support, peer support and support for partner/family.

Discussion: The variety and complexity of needs show that people with brain injury and their partners need to find a new balance in order to live a fulfilling life despite the consequences of brain injury. The overarching need for continuity of care from the transition to home onwards provides important implications for supporting the process of learning how to live well with brain injury.

Introduction

Survival rates of people with acquired brain injury (PwABI) have increased in the last decades due to the improvement of acute medical care (1,2). Living with brain injury, many experience problems in the longer-term problems, which are often primarily psychosocial in nature (3–8). They include difficulties with interpersonal relationships, work, leisure activities, personality changes, behavioral problems, cognitive deficits and emotional problems (1,6,9,10). New difficulties may even emerge in the long term due to changing circumstances (6,11), for example, when one loses their caregiver and loses support or when one becomes a grandparent but experiences difficulties with caring for their grandchild. Long-term consequences of stroke not only affect the autonomy and well-being of people with brain injury but also impacts family members, specifically partners, who usually fulfill caregiver roles after the brain injury of their loved one (12,13).

In the Netherlands, different forms of care and support for longer-term problems are available and provided by several disciplines, such as psychologists, medical doctors, social workers and physiotherapists. However, there seems to be a mismatch between the available services and the actual day-to-day needs of PwABI and their families in the long term (14). Unmet needs for PwABI as reported in the literature involve understanding the injury, improving emotional difficulties and stress, activities of daily living, communication and finding employment (6,15–18). In addition, PwABI have difficulty finding and accessing services to support them with these issues (16–19). Partners may have needs in direct relation to the problems of the PwABI, such as coping with behavioral and emotional issues, but they also have needs of their own, including respite from caregiving and emotional and social support (13,15,18).

Many studies on needs covered a time span limited to the first few years after the injury (17,20–22), but there is limited research on longer-term needs of PwABI and their partners residing in the community. Studies on longer-term problems are of a less recent date (15,19). Organization of care is subject to continuous change, with an increasing importance being placed on the perspective of the service users. According to the 2018–2030 Action Plan for Stroke (23), more research is necessary to elucidate the needs of patients and carers in order to guide current innovations in the provision and organization of care services. Therefore, the current study aims to complement the existing literature by qualitatively exploring the perceived long-term needs both of PwABI and of their partners. In this study, discussions on care needs were embedded within topics of living with brain injury or with a partner with brain injury to elucidate day-to-day needs and corresponding health-care needs.[…]

 

Continue —->  Finding a new balance in life: a qualitative study on perceived long-term needs of people with acquired brain injury and partners: Brain Injury: Vol 0, No 0

[BLOG POST] Survivors Speak About Recovery and Acceptance

By Marilyn Lash, MSW

You don’t get over a brain injury like you do the flu or even minor surgery. What can survivors and families expect for recovery? Why do so many struggle with acceptance of the changes and losses in their lives.

No one knows these issues more than the individuals who are survivors of brain injury. This issue of Brain Injury Bulletin features their voices about the meaning of recovery and acceptance.

Myth of Recovery

Learning to Live with Yourself after Brain Injury,is not an easy or quick process. Aptly the title of his book, Jeff Sebell says, “There are some hard realities we must face. First and foremost, there is no such thing as recovery. No one recovers from brain injury the way someone recovers from an illness. You don’t get released from the hospital, hug your family, and return to work vowing to put your brain injury in the rear view mirror. You don’t pick up where you left off in your life as though nothing happened.

You just don’t…. Life will not be the same as it was before…nor should it be. Being able to adapt to, and accept, drastic changes in life is an important skill. It means rather than looking at the time post-brain injury as recovery, or an attempt to return to a former life and pick up your routine where you left off, it’s all about discovery. It’s about learning what and who you have become and fitting into the world now.”

Recalculating
Hilary Zayed also avoids using the word recovery. Instead she talks about recalculating her life after her brain injury. Rather than a straight uphill climb of progress, she describes her recovery process as “…a spiral of getting better and getting worse. After the trauma of recovery, there is an expectation that you are fixed; and can move on. You are expected to believe the universe lies before your unfamiliar new feet. With strategies in hand, a game plan in mind, and friends and family for support, you set off into the unknown. However, you soon learn you need to recalculate.” This means finding new paths and new directions.

Trying a different way when old strategies no longer work. “Repurposing a life and finding a new direction can throw you in and out of a spiral of depression, anxiety, and needing help again…. This time of readjustment and recalculating brings up questions like, ‘Can I do this alone?’” She has learned to say to herself, “Stay strong and move forward.” Recalculating led her to a new journey of reinventing her self, perhaps her most important discovery.

Rising Again
Carole Starr explores the concept of acceptance  further in her book, To Root and To Rise – Accepting Brain Injury.  You’ve probably heard these questions or asked them yourself: What does accepting my brain injury really mean? What does acceptance look like? And most importantly, How do you know when you’ve accepted your injury?

She explains that, “Acceptance is acknowledging the reality of a situation. It’s about recognizing the difference between what can be changed and what can’t. It’s being able to say – without any internal resistance –  ‘It is what it is’.

Starr learned that acceptance isn’t a one-time event. Rather, it happens in small pieces over time. It doesn’t mean liking what has happened to you, nor does it mean you are giving up hope of making progress. Rather than trying to get back to the person you were – the “old me” – it’s about becoming the new me. Acceptance is not the end stage but the beginning of your journey into transitioning into living with a brain injury. Acceptance is about transitioning from mournfully looking back at what was to embracing what is.

Families Join Survivors
Brain injury is a family event; it affects everyone in the family. Relationships change along with altered hopes and dreams. From her experience as a caregiving spouse and her studies on grief and loss, Janelle Breese Biagioni views adjustment and acceptance, not as a destination, but as a process for survivors and families with three stages.

Say Hello…
This means reflect on the life you had before the injury, whether you are a survivor or family member. What was important to you in that life? What did you value? What brought meaning to your life? As you think back, reflect on your relationships, your interests, your work, your friendships, your hobbies….the list goes on.

Say Goodbye…
This is the hard part. It means letting go of parts of your previous life that no longer exist. You may be leaving behind concrete things like a job, college or travel. It may be relationships that have changed. It may be activities and interests that you let go.

Say hello…
Only once you say hello and goodbye to your past can you now say hello to the person you’ve become. This is the beginning of who you are now and how your life now is.

Your Journey
As you travel your journey toward acceptance, remember you are not alone. Others have shared your journey and still more will join you.

www.lapublishing.com 
Call us: 919-556-0300
Fax: 919-556-0900

via December 2017 Brain Injury Bulletin from Lash & Associates

[BLOG POST] Miscommunication …Straight From the Horse’s Mouth

By Bill Herrin

Communication is the lifeline of any relationship!

 

Work to take frustration out of communication

When a TBI happens, the survivor is the primary person left with the biggest life changes of all. However, family and friends are also impacted in a huge way. For survivors of a TBI, finding ways to communicate about worries, frustrations, physical issues and emotions – as well as conveying all of these things to loved ones is not only tiring – sometimes it just doesn’t come out in a way that’s easy to understand. That’s miscommunication. Your grasp of your life after TBI is going to depend on several key factors: acceptance, progression, facing denial, and finding the inner strength to move on with your “new normal.”

That’s an easy thing to tell someone, but living it out is a challenge that every person will handle differently – as varied as each brain injury (and its effects) can be. Your mental and emotional connections to others are going to be different. Responses to how you communicate can be different as well…all leading to miscommunication on both ends of any conversation. That can lead to frustration, anger, hurt feelings, and a host of other things. We’re going to take a look at how to soften the blow of harsh words, misunderstandings, missed points, and overall miscommunications.

Saying how you feel

One of the key things to consider as a survivor of TBI is this: No matter how you feel, try to consider how the people all around you are feeling as well. They may be feeling bad for you, or they may be feeling time constraints from caregiving, or possibly just feeling overwhelmed or concerned that you’ve changed since your TBI. Communication of thoughts between the two of you (or between you and all of them) is critical to your successful recuperation, to your emotions, and your relationships. This also goes for your family and friends – they should strive to understand that you are affected by their attitude and communication with you. It’s always a two-way street, and it even was before TBI came into the picture – but, now it’s even more critically important. Miscommunication can create even more stress.

They’ve noticed change

Empathy makes things better for everyone involved

Friends come and go, many last a lifetime, but family is forever. Keep in mind, family members can be your best advocate – or your worst critic. The point is this: it’s best to surround yourself (to the best of your ability) with people who understand how you’ve changed and they embrace the change. Empathy is one of the strongest healers – having an understanding of what someone else is experiencing, and “putting yourself in their shoes” can make the worst situation more bearable for everyone involved. This goes for the survivor, family, friends, and co-workers, etc. Seeing how everyone deals with the your TBI can bring a team together, instead of having miscommunication and strife. Strife is going to happen, because nobody is perfect, but remember that we need each other!

Trying to read people

When we talk with each other, half of our expression comes from….well…our expressions. Our facial expressions and body language say a lot, and can be subtle or direct. Survivors of TBI may lose their ability to take expressions or body language into account, or even misread what it being intended. This is also miscommunication. For family and friends, a natural rapport and emotional (as well as physical) healing will usually improve with time. Remembering that is key to maintaining a friendship with the TBI survivor in your life. They’re working toward their new normal, and their frustrations are going to be running high as well. Work toward better communication together!

Expression and tone of voice

Try not to get discouraged

Voice, diction, and clarity of speech can often be affected after a TBI. As a survivor of TBI, strive to work on your speech patterns – with a clinician if possible, or with a caregiver or friend…and even on your own if possible. Enunciation is only going to improve with practice – kind of like playing a musical instrument. Practice, practice, practice! You’ll never get further without having the will to improve. It’s that simple – nobody can make you want to improve, but they can encourage you to do it. One of the bigger parts of miscommunication, beside changed behaviors and expressions is the simple fact that clarity of speech makes a huge difference. Some may never be able to achieve their previous language skills, but communicating what you feel, need, think, want, etc., as clearly as possible is going to be the reward for all your hard work.

Changes in relationships

Whether a TBI survivor is married, single, a child or teen, man, woman, or anything else – relationships are the fuel that keep most people pushing ahead. Since relationships require effort from all parties involved, be aware that brain injury is going to “throw a wrench” into the mix. Many people want to solve problems – they’re “fixers,” full of suggestions and comments, and sometimes criticism. This can bring a lot of tension into a relationship. If you can work to remember one thing about relationships, it’s this: True friends love you for who you are, and they’ll meet you wherever you’re at. Despite being different after TBI doesn’t mean you’re a completely different person, but it does mean that parts of your personality, likes, dislikes, and other things have changed. If someone points out to you that you’re not the same person any longer, consider telling them this: “Think of me as a house. I’ve made some new additions, I’ve changed some things around, I’ve gotten rid of some things, and maybe I don’t seem quite the same. But I’m still the same house…just a remodeled one, now.” Maybe that simple analogy will explain that you’re always going to be you, but changes do happen!

The bottom line

Frustration can make your day seem long

This particular blog is purposely not referencing clinical books, studies, findings, or scientific facts. The goal here is to help families and TBI survivors see themselves in a different light, as a team – as co-conspirators in a battle against TBI, that they both are fighting together. A TBI survivor needs you. You need and love them. Don’t let miscommunications become a wedge between you, because they’ve changed. Overlooking an outburst of frustration of a TBI survivor could make the rest of their day much better. For a survivor of TBI, letting go of a snide comment about them by a loved one who is frustrated or tired, could mean the difference in their day. Communicate with each other as clearly as you can, and always work toward better communication. It’s the key to progress. I hope that you can find contentment in life if you’ve experienced a TBI. I also hope that you will find it as a caregiver, family member, or friend of a TBI survivor. The words of a very well-known college basketball coach come to mind – Coach Jim Valvano, from North Carolina State University was battling terminal cancer, and in one of his last speeches to his adoring public he said “Don’t give up. Don’t ever give up.” Those are words to live by.

via Miscommunication …Straight From the Horse’s Mouth – Brain Injury Blog With Free TBI Information

[WEB SITE] Brain Injury: Why Does My Loved One Act Out? – Brainline.org

A family guide to emotional and behavioral changes after a brain injury

Understanding Brain Function
Your doctor may have told you that your loved one has suffered from a brain injury. What exactly does that mean? The brain is highly functioning organ that controls your entire body. It is divided into two main parts: the left brain and the right brain.

The left brain is responsible for controlling the right side of your body. It is also responsible for things such as reading, writing, arithmetic, and memory retrieval, which is bringing back things that have already happened in the past. One thing that is special about the left brain is that it is very detailed.

The left brain helps to recall the specific parts of thought, though only in a language format. It also remembers little things such as the rules of the English language, or whatever language you may speak.

In contrast, the right brain is responsible for controlling the left side of the body. The right brain is also seen as the creative side. It controls and contributes to activities like art, music, and non-verbal actions. Memory of sounds and sights is stored and recalled on the right side of the brain.

Some Things You Can Expect From a Person with a Brain Injury
Each person’s injury is unique to their situation. Therefore, each person reacts and recovers in a different way. Your loved one may experience some or all of these reactions.

Restlessness and agitation
When a person suffers a brain injury they are often unable to focus for large periods of time, therefore becoming restless or agitated. It is important to remember that these responses are normal, and that the person should only be given small amounts of information to process at one time. They will be able to think through and process small bits of information easier than complex ideas.

Lack of extreme emotional response
Due to the brain injury, your loved one may not show emotion over things that they may have been very concerned about prior to the injury. This is not because they don’t care, but because their emotional responses are simply not there. If the front part of the brain, which controls emotions and behavior, is damaged, it may cause your loved one to act out more. In addition, your loved one may have emotional outbursts or crying for no reason or when it may seem inappropriate. Be willing to give them support and talk to them. Ask them what they are feeling or why they are frustrated. Ask them if there is something you can do for them.

Continue —> Brain Injury: Why Does My Loved One Act Out?