A Letter to Caregivers
Often, it’s hard for people without a TBI to understand the daily challenges of what it means to live day by day, moment by moment. Sometimes, it’s not even understood by us how we make it through the next 30 seconds. Sometimes 30 seconds is all that we can do for the entire day.
All we can ask of you is to be patient with us. Be kind. Let us move as we need to move, which will often mean slowly. Let us go as slow as we need to, because the slower we go the better we can do.
When you talk to us tell us something beautiful, something interesting, something magnificent that you have found. Steer clear of your daily discomforts and complaining – we need the light.
We know you mean well when you say that you understand what we are going through, and we appreciate your empathy… but this is something that you can’t fully understand unless it happens to you. Be present with us, support us, and meet us where we are so we know that no matter what happens you will be there to help us if we need it.
Structure, more than anything else, is what helps us get through the day to day. This is why we ask you to help us by being on time to appointments and if you’re not going to be on time then call to let us know. Our entire day of brainpower can be thrown off by you not showing up on time, so it’s so important that you do.
We love that you want us to know that you understand and empathize with our situation, but do not try to relate to us. A TBI is not something you can fully comprehend unless you have one. What we need is for you to listen to us, to hear us, and to acknowledge that what we say has been heard – these things are far more important for us to feel comfortable and safe.
TBI Words, Phrases, and Misunderstandings
To a person with a normal function brain, they may not understand the daily struggle of what it means to live with such a life-changing injury. Daily we have to navigate a world built for people not like us. We have compiled a list of misunderstood words, phrases, and ideas below to help people better communicate with us.
1a. Self Advocate – Is a person with enough strength and balance of the mind to figure things out and then to properly take action.
1b. Self Care - Is a person concern with their safety, period!
2a. Survivor - Is a person who escapes or breaks free from a dangerous experience or illness or sorrow.
2b.Surviving - This is an ACTION WORD, not a statement of completion as the word Survivor does... Surviving means you volunteer to actively keep alive!
3. Thrive – Thrive is a word used to describe people who are taking life by the horns and living like there is no tomorrow. Living with TBI doesn’t mean we will thrive in the traditional sense of the word and we shouldn’t be made to think we have to. Live life on your terms and in a way that makes you feel good. That’s what matters – and all that matters in the end.
4. New Norm - No! The New NORM is a death sentence to who I am. I will be the same human I was before but now I have TBI. I will not be a TBI victim nor will I sell my soul to the TBI establishment!
5a. Statements of ignorance (not malice) by healthy people: “You can do this.” “Get over it.” “Change doctors.” “Yeah, I forget things also.” “It is your Attitude.” “I don’t see anything wrong with you.” The person with TBI needs to listen to healthy people’s one-liners and hear their sincerity rather than the words they don’t understand may hurt us.
5b. Statements: you are smiling or laughing and someone states, ”You must be healthy now,” because you show a glimpse of happiness.
6a. Objective means = I have TBI
6b. Subjective means = I have TBI and I will smile and laugh along the way.
7. PDST is not TBI! PDST is one of the results of having TBI, and so is sleeplessness, anxiety, loneliness, and on and on we can go. Solving any of the symptoms of TBI does not make TBI go away.