Hello everyone. My name is Mindy. I acquired my TBI on Halloween of 2008 while walking to a friend’s house. My injuries included a broken back L3, L4, L5, paralyzed vocal cord, and a Diffuse Axonal TBI. The doctor’s prepared my family for my passing but by the grace of God, I pulled through. My story has amazed numerous people and I had endless support during the 2 months I was hospitalized. However, the support I have disappeared soon after my release from the hospital. Now, I am 25 years old and the only support I have is my boyfriend, Kent. It is very difficult because he does not know what he is suppose to do. The people you would assume would be there for me, such as my mom, dad, and siblings, are not. They treat me as a typical college student. The parts of my brain that are damaged hold my emotions, learning, memory, vision, cognitive skills, and balance. I am searching for support and help. I am desperate.
I lost everything also…So I understand…Be thankful your boyfriend has hung around!..My wife of over 25 years…well…I cant speak for her, but many times the professionals around be said" who has the TBI?"
This is a great place to vent, ask, and stop in daily!..I wish you the very best and hope things might change for you!
There are many of us here in a similar position to yourself, in that, many of our former supports have disappeared. The lack of understanding of just what is involved with a brain injury is huge. Some believe a brain injury is a bit like a broken bone, give it 8weeks and its all healed. But this is far from our reality. Even some of the dr’s have a lack of understanding, some of us have even been labelled malingerers, as if we are in this position by our own choice.
Personally I find the only people who truly ‘get it’ are people who have been in this position. Come talk to us. We understand from experience and not just from a book or what we have studied and we know this is not an easy route to be on.
Are you and your wife still together? What did she struggle with?
Thank you!! That is comforting. I’m a smart woman and I know that but that doesn’t mean I don’t have struggles. I look fine, get good grades, and go to the gym regularly. When I do well in school or do something I didn’t think I would be able to, I get so upset sometimes because I don’t understand why my loved ones aren’t praising me for my accomplishments. My boyfriend asks me “what do I do?” And the truth is- I have no idea.
What you have lost is felt and appears utterly catastrophic for you Mindy. I am sorry. From my experience my TBI created emotional doubt and vulnerability, shameful and misunderstood, powerlessness and hopelessness. This built into lots of shame, fear and rage. In these emotional reactions I became extremely restless and my nervous system tuned to a high pitch. What was extremely difficult was my unconscious impulses would erupt into my mind, fueling my intense involvement in my perceptions, in my work, and my relations with others. My life became so involved, so complex and exhausting, I stop trying to make contact with anyone.
I can only say do not force your conclusions. Your mind may feel the need to seek order and if there is none you may feel yourself wanting to impose an order of your own. I suggest to not seek order and learn to accept not-knowing. Gradually learn to allow yourself to live within your limitations and gradually work towards acceptance, as acceptance is a starting point in life which makes other things possible. Acceptance heals and will lead into self-acceptance. However, self-acceptance can be painful, especially with a TBI. I say this because true acceptance can make us face this enormous gap who we have taken ourselves to be and the truth of who we really are. Yet as you learn to accept it helps to develop yourself as you are, within your talents and your limitations.
My suggestion to your boyfriend, as to how he can help you, is to allow you to talk about your struggle with acceptance and self-acceptance. Just learn to be genuine and authentic, nothing more and nothing less, as you are doing here. I then believe this will give you a firm foundation upon which to develop as a person. Feelings should originate from within and then give you your own value. Then when your own value is formed within, other people honoring your value or not will make no difference, because you are then making something valuable of yourself.
ACCEPTANCE is simple but perhaps the most difficult to grasp without a direct experience of it. So I suggest you talk it out, build confidence to rest in hope and let the flow become one enormous creative dance in acceptance. In a special way you have a profound partner, where your mind no longer needs to define objects and divide your experience into different categories. She is called the awareness of Acceptance and I feel this is your Hope.
Thank you for being here and the significance of your presence!
Hi Mindy. Nice to meet you. You are probably going around and around in the tornado of your situation right now. For what it is worth: that is normal given your situation. You might find some comfort knowing that thousands and thousands are either in it or around it or whatever.
Everybody else touched on it: nobody, especially doctors, and caregivers, and survivors know what to do because there is just no good manual on how to do it. It is frustrating and disappointing. However, there is community here and that can help with a lot of the situation that you are in.
Fellowship is key. Thank you for joining us here. You will make us better with your presence. Hopefully vice versa.
Ask anything. Say anything. People here “get it” in a way that others don’t despite the fact that we all speak the same language and all that. It is so frustrating for everyone and actually caregivers have an emotion limit. They have one, they are human.
Lately I’ve been saying “For survivors and caregivers… a TBI is too difficult. I don’t need to decorate it or anything. It is actually too difficult.” I wish that were the starting point. Then people could all give themselves and others a break for how they handle this surprising, surprising situation that they have found themselves in. Then I laugh because the whole thing is so outrageous sometimes.
That is my story for now. Please share your story and laugh and cry and scream and be quiet. Whatever makes sense. Have a great day.
I know I have a major issue with forming conclusions and seeking the order I expected myself to be at. I am 25 soon to be 26 years old, still in school (last year), and I live with my boyfriend of almost 3 years. I am seeing a numerous amount of my peers doing things I thought I’d be doing; getting married, having kids, and having a full time job. How do you cope with this? I compare myself to these people and I know that isn’t fair but I want my life to be where their life is right now. I struggle with this on a daily basis.
Thank you for what you write and your question, as you express: “I am seeing a numerous amount of my peers doing things I thought I’d be doing; getting married, having kids, and having a full time job. How do you cope with this?” This is a tough question to answer because it feels based on deep suffering from you and my suffering is here also. For some unknown reason, as a TBI person I felt something is/was missing inside. I am not sure what it is, but other people seem to be happier, and better off than me, as you are expressing. Other people are somehow more alive and more whole. From you I hear you saying “Other people seem to be having more productive lives and careers and wonderful marriages,” then you feel this is not possible for you. For me a voice within always said “No one understands my suffering.”
From my experience, the problem for me was I over identified with my woundedness, with my sense of inner deficiency, and then I made a lifestyle out of my suffering. What I perceived was true, as my mental connections go haywire and sometimes true craziness, yet basing my suffering on my mental limitations ultimately made me more deficient. This made me get caught up in my emotional reactions and beliefs about my deficiency. I constructed an identity out of it, which made me feel like an outsider who never belong anywhere, while imagining others do and I disliking them for it. The result was/is this constant emotional storminess and reactivity, which there is no true identity, value, or for that anything else.
So to answer your question Mindy and to help your awareness where you do not feel lost or swept away in emotional reactions as I have done, I have had to learn to let myself be touched and affected by my experiences, but not getting caught in feeling lost or swept away. I have had to learn to compassionately connect to the truth and at the same time drop my unrealistic expectations of myself and others. Compassion offers tremendous support and it seems to allow this place to be touched and transformed, both grand and subtle. Compassion appears to handle negative experiences and can make it into something positive. This compassion also seems to balance the emotions, equanimity, and opens the door for the soul to transform every experience.
The wound in us wants to sustain a particular identity. But this is more of a concept or a belief than complete truth. I say this because the wound, as an identity, will take us away from this tremendous creative flow. I suggest, therefore, you learn to use all your experiences to grow within your compassionate heart. You also need to know Mindy you are bringing something good and beautiful into the world. This is not a concept or a belief as it is more to your source and your true identity, within this creative flow. Simply rest here and in this delight in your heart’s inner source, as a creative compassionate flow. This will sustain you always.