Episode 6 - Living with a Concussion/TBI: Adapting to a New Way of Life
Episode 6 - Synopsis
Moderator: Becky Moran
Episode Description: Becky Moran, Occupational Therapist with the Acquired Brain Injury Outpatient Team at Parkwood Institute facilitates this discussion about adapting to a new way of life following a concussion. Some of the topics this episode explores are the challenges of pacing oneself, relationships, and changes in identity.
How to listen
MAIN POINTS, TIMESTAMPS, THEMES & RESOURCES
On-going challenges – 3:48
Adapting to the new lifestyle.
Understanding your new needs and accommodations.
Acceptance of challenges that come with it.
Sensitivities to noise and light and adapting your lifestyle accordingly.
Changing mindset and adjusting life plans in accordance with your new reality.
Thinking that doing more therapy or doing more will help relieve symptoms.
Social challenges – 6:03
Learning to be gentler with self and evaluate priorities.
Sometimes it can be difficult for family members to understand.
It can be hard when people around you minimize small victories that may seem big for person injured.
Advocacy and engaging with the Concussion Community can help with social challenges.
Takes more time to do tasks that would usually be easy. Being kind to yourself throughout this process is important and can help mitigate negative self-talk.
Peoples support or empathy changing overtime – 9:49
Sometimes it takes people seeing you at your worse for them to have empathy for what you are going through.
The more you vocalize your struggles or limitations the more empathy and support changes in a positive way.
Communication can be a big difference maker because people cannot see the symptoms.
Friends and others don’t see the struggles you feel after being at a social event they only see you at your best.
Explaining your situation to people can become exhausting therefore it can be helpful to have a one-liner ready.
Disclosing your injury for new opportunities – 16:12
This experience can be hard to work through given that it changes within each context.
You can frame it in a way that the experience has given you life skills. The unfortunate part is having to understand the context of the environment of the job or school you are applying for.
Context, context, context.
Sustaining a concussion at the workplace can impact the way you are viewed in the workplace, especially in environments that there are a lot of turnover.
How has your identity changed? – 23:06
Often go from having little to no empathy to becoming extremely empathetic. Going through a traumatic experience like a concussion or TBI can help you understand more about other people’s struggles.
A concussion can interrupted your life, and the process of acceptance can help foster more empathy.
Honing other skillsets or passions in other areas of your life can help you move forward from your past identities.
Stepping outside of high-achievement mode and transitioning to just being can be helpful and freeing.
Learning to value who you are opposed to the things that you do or accomplish can be an important part of the acceptance process.
Shifting Mindset Throughout Recovery – 28:40
Focus on what I can do and not what you can’t do.
Finding a match between who I was before and who I am now living in the moment. It can be hard to let certain pieces of your old identity go; this process can be much harder than anticipated.
Reflect on where you were and how much progress made. Recognize your resilience and how much you have been through already.
Being able to speak openly about what you are going through and connecting with people who will understand or who have been through a similar experience.
Did you ever feel like your life is over? – 34:24
Depression can play a role, but podcasts and stories of people with lived experience can help.
It can be a rough transition but when you find a new track in life you can start over again.
You can develop a what if I don’t get better and what am I to do now mentality. As time progresses these thoughts go through ebbs and flows. Once you meet yourself where you are at you can begin to overcome the potential darkness.
Finding your own balance between rehabilitation, social time and rest can be helpful.
Communication Techniques – 40:34
Getting involved on social media so you can communicate with people who understand what your experience is like with a concussion.
Support groups can help you learn new communication tools.
Find new creative activities to express yourself. Finding something that brings you joy can help you learn new ways to express yourself as well.
Important to know who you’re talking to because some people will never understand the depths of what you are going through. It is important to not waste your energy explaining yourself all the time.
Using voice memos instead of text or use voice to text software’s to help you communicate better.
What people should know about brain injury – 47:29
You’re not alone.
There is always hope.
Concussions do not only happen to athletes they can happen in every aspect of life.
Comparing yourself to who you were before to who you are after the injury is not helpful. Work with health care practitioners to develop a new path forward without expectations.
Evidence has changed regarding exercise in recovery. It can be helpful to have gradual activity to build up your exercise tolerance.
Getting accommodations can be difficult if you are not honest about all your symptoms.
Don’t compare your recovery to others because everyone has their own recovery pathway.
Do your research and find the right treatments and therapies that will work for you. Usually a combination of a few different therapies will work, there is no magic pill that will solve everything.
If you are thinking of going back talk to academic success advisors to learn about the different accommodations available. If the forms are too much to handle, fill them out with others who are supporting you through recovery. Start this process earlier than later so you can get the supports you need before you need them.
When you are around a concussed person it can be helpful to direct the conversations towards how they are feeling not about what they are doing.
How have your goals change since the injury? – 58:58
Sometimes the goals themselves don’t change but how you get there does.
Goals can change completely, but the new path forward can allow you to find goals that are more meaningful.
The goals you have can take on new meanings that motivate you even further.
Resources
Beads for Brains - https://beadsforbrains.com
Ted talk – Phil Hanson: “Embrace the shake” https://www.youtube.com/watch?v=YrZTho_o_is