After my Brain injury I worked hard to get back the skills and abilities that I had lost, driven by the desire to get back to where I used to be. It was obvious to me that getting those fundamental skills back; walking, talking, tying my shoes, etc., would get me there.
However, after months and even years of failure, stuck in a depression and frustration, I saw this wasn’t working. There was something missing. I decided to look at my life after brain injury differently, and after much thinking about what was missing in my life, I was able to see a new way forward.
Even though I had worked like the dickens to get back what I could, I learned that just getting those skills and abilities back wasn’t enough. I saw that the quality of my life depended not on the things I could do or how well I could perform, but on who I was as a person.
I finally realized my main focus should be on once again feeling whole, finding my place in the world, and feeling like a human being.
The Need to Belong
The ability to feel whole and feel human is not tied to being able to do or accomplish things, but rather, it is directly related to the ability to belong and be a part of what’s going on around you. Feeling as though we belong; to a community, a social group, a band of people, etc., validates our existence by adding meaning to our everyday activities.
When we feel as though we belong to a group of like-minded individuals, we are not so alone. We feel comfort and we live with a greater purpose, whether we belong to a club, group, or a family unit. Being part of a community makes you feel human and brings the best out in you. When you belong, you have a voice and you have a presence and are accepted for who and what you are.
This could be in any community that feels comfortable to you. A place that feels like home, that doesn’t depend on you for what you can do or what you used to be able to do, but takes you on as a member because of who you are and how much you give of yourself.
But, as we all know, socialization and being part of the community is really difficult after brain injury. It does become easier after you realize it’s not the getting that’s matters, it’s the giving.
The TBI Club
Whether we realize it or not, or we accept it or not, there is a de facto organization we all belong to, and this is the TBI Club. Although the TBI Club is something we would rather not have to belong to, we don’t have a say in the matter; we are all members because we have experienced some sort of brain injury.
Our ultimate goal is for the TBI Club to be an in interim club; a place where we can go where there are like-minded people, and where we feel loved and accepted as we adjust and adapt to our new lives. We can practice being human and we get a sense of community and camaraderie from the TBI Club by mingling with other people who “get us” because they have been through a similar experience. Practicing to be human in this way can serve us well in the outside world.
We can engage in communicating with other members of the club; being able to vent, share stories, information, heartbreaks and triumphs. By giving ourselves to other members in the community we heal ourselves. By doing for others we learn about ourselves and we feel good about our ability to affect others lives. Perhaps most importantly, we learn we all have something to give.
We all want to make a difference, and it is important to give to and receive from others in the club in order to build our confidence and feelings of usefulness. It is up to us to teach those who are members and those who are not members about brain injury, and to become an example to others by living our lives the best we can.
As members of both the TBI club and the human race, it is up to us to develop a purpose for our lives so we can understand who we are as people and define our place in the world. Only by focusing on the giving to others can we find our place in the world, define our purpose and have that purpose serve as a reason for getting out of bed everyday, as we move forward to a place where our lives are not only about ourselves.
Thanks for reading, Jeff
Thanks Jeff. I needed to hear this today. Now, 3 1/2 yrs after my TBI, I am realizing I will never be my old self again. I kept thinking that with the tight ant- depressant that I would return to my old self. Accepting this is hard, to say the least.
If you have anything that would help me accept this, I would really appreciate it. Thanks.
Acceptance is very tough. Once you do it you give yourself the freedom to explore your new self. I think what is behind acceptance is a decision you are making to discover and live your life. That’s all it is: a decision you make concerning how you are going to live your life. This decision is made easier if you make a commitment to learn how to be who you are now. All this is easier said than done, but it starts with you. Good luck, Jeff
Nancy,
This is hard because we just woke up somewhere in a bed and all of a sudden our lives were forever changed and we had no choice in the matter! I am 6 years post a massive stroke that nearly killed me at 49.
What I’ve learned is this: You have to mourn the loss of who you were and what you did. We are so defined by our profession or vocation. No longer considered a wife, executive, or even friend to some was devastating. Thankfully, I was still mom and grandma, but even my kids had difficulty coping initially. So we experience huge losses in the first few years and disappointment as people we expected to stay close and accept us as we were drop away.
That’s the sad and hard truth I experienced. If you are or have gone through this stage, then the next part of your life can be wonderful. Much of what Jeff already said is so very important. Let me add this: Reinvent Yourself! You get to decide who you become and what you will be from now on. Look to your past dreams for yourself. Things you wanted to do, but were busy with life, maybe raising a family, or working. Think about hobbies you may have had even a passing interest. All the things you longed to do can be done now – just done differently. For example, I loved doing crafts when my children were younger. I finally realized certain crafts didn’t work well with one hand. However, I decided on scrapbooking, card-making, etc. Why? Because there are no rules, I use re-positional glue, and I make what I think is beautiful! I try to go to as many musicals as possible (wearing ear plugs to soften loud sounds). I take trips to visit friends; so far they have been 3-4 days (with a caregiver). I am not giving up on the idea of a longer and further distance.
Volunteer. Find your causes; they will find something for you to do and it’s mutually beneficial. It gets you out of yourself.
Above all, don’t neglect your spiritual life.
Be Blessed Nancy!
Chin up! Thank you ?
Once again, you spoke to what my heart is going through! Amazing! Now i need to take your words into my heart, as well as my mind, and see where I need to go.
I keep wanting to go back to where I was, but perhaps I need to go where I need to be. I’m not sure where that is –yet, but I’ve changed my way of thinking through this after reading your post. Thank You!
awwwwww…. that’s so true. thank you for saying what i feel. i wish i lived closer, so that i could attend. when is the next meeting? thank you!
Thanks Jeff hit the nail on the head I am starting to relate to being all messed up and getting okay with it slooooooooowly though. My brain might be injured but damn if I don’t still have a hard head just stubborn as a mule I can be.
Fantastic. Each post hits on a piece of what we go through, and as someone with no support system these words of wisdom are so helpful. Thank you!