We Are Not Our Disabilities

[Emerson]

(For anyone who reads my blog at DancingUpsideDown.com I wrote this post here first but also just posted it on Dancing.)

I stole the line used in the title from a poem Jessica Starr posted the other day in the forum section. Her line was actually: You are not your disability.

I have been thinking a lot about what it means to be a "Survivor". Why do some of us rebuild or build a life that we can live to the fullest of our abilities, and others succumb to only existing and bemoaning their fate?

It is interesting to note that even the definition of survivor addresses that difference. Webster's New World College Dictionary defines it as:

sur·vi·vor (sər vī′vər)

noun

1. a person or thing that survives; specif., a person who has survived an ordeal or great misfortune
2. a person regarded as resilient or courageous enough to be able to overcome hardship, misfortune, etc.

sur·vive (sər-vīvˈ)

verb

1. To remain alive or in existence: live on
   
2. To to continue to function or prosper
   

(The latter definition of survive is actually from Merriam-Webster Online Dictionary.)

The thing is that those two distinctions, what I said above about overcoming and thriving or succumbing to existence and lamentation, are very self perpetuating. The more positive someone is the more people want to help the person. The more whiny and "Oh poor me" the person is, the quicker people get fed up and quit trying.

In a private conversation with someone recently I addressed the problem and a possible solution as follows:

There is a thing that can happen anywhere, including in a medical setting. There are non-obvious, unintentional leaders in any group. Equally, there are non-obvious, unintentional salespeople in any group too. These positions have nothing to do with rank, job description, job position, etc. They are traits in the personalities. The thing is often a person is not aware that they have these traits and that they lead or sway group thinking. The reality is, on a subconscious level, the rest of the people follow the lead and/or believe the salesperson.

Why this is important is that if at first you came to you caregivers and gave the hidden leaders and salespeople a certain impression and/or they got an attitude about you then they may have infected the rest of the team. The way you change something like that is to help people become CONSCIOUS. Presenting people with clear direct communication wakes them up out of the subconscious attitudinal stupor. Because you have been being beaten up so badly by some of your experiences, and because you were not treated properly for your depression, I can imagine that you might have seemed different than who you really are.

People like to help winners. It is reality. I have theories on that. I think it has to do with how it fires up pleasure and reward centers in a person's brain. Think about and sense how you feel when you are around someone who is on a downer; it is draining. Then think about the rush you get when you are able to truly help someone; it is uplifting.

There is another aspect to it too. When you bring complaints about your boss or neighbor to someone; there really is no action they can take to fix, improve, or change the situation. It gives people a horrible feeling because it is really just poisoning their space with negative emotions.

When instead, you bring healthcare professionals specific issues and questions about you - not someone else; they have something concrete they can take action on; a way they can help you. They want to help! I mean really want to- it is why they went into the profession.

Note that I said "and questions" above. By being specific, I do not mean that you have to know everything you need help on. You can say "I feel confused about what does and doesn't work for me right now. It makes me feel sort of lost. What are some tests and evaluations we could do to help me understand my capabilities clearly and regain some clarity and confidence?"

By being a winner I DO NOT mean a falsely positive attitude. I mean someone who conveys their desire to move forward, who is hungry for help and tools to reenter life and, if possible, the work force. You have made the switch from a victim to "Okay, this is me; now how do I move forward." You need to convey that at healthcare professionals. They may not have made the switch with you. You need to help them do that by being a leader of yourself. When patients lead - healthcare workers follow! I guarentee you!

A good trick to use is to walk around your house and get the feeling solidly in your body of sometime when you were feeling successful at something big - like a period at some job, etc. Did you just notice that as soon as your mind started looking for the thought and feeling that you just sat up straighter? It is amazing the difference that being in the right headset makes!

The next time you go to the clinic, sit for a moment in your car and connect to that time you have gone to when walking around the house, then walk across the parking lot and get it into your body. Approach your work of healing and figuring out your next steps toward a fulfilled and happy life from that place.

I recently came across a video of Jeff Bezos, the Founder & CEO of Amazon, giving the Ba.... One's character, he suggested, is reflected not in the gifts one is endowed with at birth but rather by the choices one makes over the
course of a lifetime.

He spoke of taking the risk of leaving a secure job and starting Amazon: "I didn't think I would regret trying and failing. And I suspected I would always be haunted by a decision to not try at all. After much consideration I took the less safe path to follow my passion and I am proud of that choice."

Further on in the talk he asked:

Will inertia be your guide? Or will you follow your passions?
When it is tough, will you give up? Or will you be relentless?
Will you be a cynic? Or will you be a builder?

And he closed with:

When you are 80 years old, and in a quiet moment of reflection narrating for only yourself the most personal version of your life story, the telling that will be most compact and meaningful will be the series of choices you have made.

In the end, we are our choices. Build yourself a great story.

[Tom Tatlock]

I am more comfortable thinking of myself as someone who "sustained a TBI" --- not exactly sure of all the reasons. But when persons talk about 'cancer survivors' that are 5 years post cancer the assumption is (can be) that they are well or that there is a very low probability of the cancer returning.

[Jules]

no we are not not even close

[Emerson]

I am planning a blog post soon about the issue of friends and families not adjusting to the "New" persons we become. I am actually slowly working on a book. Dancing Upside Down; a Handbook to Surviving and Thriving after TBI. I want to put a chapter in the book about the friendship issue.

[Mykaya]

we are so much more than our disabilities, I wish our families could understand this, I don't have family no more they cannot accept the new me

[Richard J]

Very nice message Emerson. Disabilities can guide us but that's all. Because of my "balance" issue I can't run fast and Jump high as before so I'm not a basketball player anymore... but that's all. Even being a survivor still means I can try anything so in my humble opinion the status of survivor is not even close to a disability.