When does it help to sometimes call it 'disability' instead of 'new normal'>

[Occipital]

Hi. I got to thinking about whether or not “the new normal” is a disability or not. That thread covers all of it well. Everyone’s reply was great to see because we are all so different and similar too. My reply there was mostly about my feelings and experiences. What I wonder about now though is in regards to how we plan our life.

By life planning I mean settings goals, structuring the day, and even looking at a 30 year plan for our life. In a lot of ways I’ve benefitted from not thinking about what was realistic. That got me through recovery somewhat easily. “Just Do It” worked pretty well for me. Until it didn’t work hahaha. I mean, that only later, years later that I felt it didn’t work well. The thing is that if my friend came to me an asked for advice on her plan, for her goal setting, and structuring and so on, and she is in the same situation, I would gently and kindly ask about ways that she could consider her life or plan her life more easily given her… ‘new normal’.

But is it easier to say ‘disability’? I have avoided it for years. But nobody knows the ‘new normal’ except us. I don’t feel motivated to teach the world about the new normal any more, at least at the moment. But if I were talking to her and looking at her life plan I would say “Well you are 32 and you can work 30 hours a week and you can’t drive and you can write reports and you can’t handle stress and you can work remotely and by some definition you are disabled in this regard compared to where you are expected to be at your age and so on and so forth… and that you can take all of these things and make a plan. A solid reasonable and realistic plan”. That is the kicker for me. It is simple. If I were helping a friend I would tell her flat out what is probably the best for her given her goals and happiness and so on. I mean, if she asked I would. Well, now I am asking myself what is realistic and good for me hahaha.

Maybe calling it a disability isn’t a sign of hopeless or giving up, but rather it is a matter-of-fact thing like… something to plan around or for. It is not emotional. It doesn’t speak to hopefulness or hopelessness. It is just a word that is an observation. Maybe it is useful for when we get back out into the world so we can just shave off 10 minutes of the conversation explaining ‘the new normal’ and then get to the useful part. Like “put me to the head of the line because I am disabled and I can’t stand there for 20m”, or something to that effect. The thing I like is that people don’t actually care about the details of my life: and why should they? Thank goodness don’t. Do you need to go to the head of the line? OK, here you go. Do you need somebody to help with your bags? Yup? Here you go.

I posted this in the Emotional Support section because this is not me promoting my worldview. Rather it is trying to make sense of it myself :).

[Merl]

Hey Occipital,
I really like your question, it is very valid and has great merit. I believe when talking to us, here, ‘New normal’ is something we all can understand and comprehend. But outside of the TBI realm ‘new normal’ can be confusing. What is ‘normal’ anyway? In society, in general, what I consider normal to what ‘John’ next door considers ‘normal’ can be miles apart. So using a title such as ‘new normal’ does not have enough definition for ‘normal’ people to comprehend. Are you confused yet?
In society when you say “I have a disability” or “I have a brain injury” it can bring up a few connotations and unfortunately some can be rather detrimental depending on the individuals understanding and comprehension of the words ‘disability’ and ‘brain injury’. For example, I went shopping one day and for me it was not a good day to be doing anything let alone shopping. I said to the shop assistant “…please be patient, I have a disability…” Her response was to yell at me as if I was deaf “DO. YOU. UNDER. STAND!!!” I wanted to take her outside and slap her up side the head. (Not appropriate, I know, but let’s be honest, nor was her response) Now, at times when I’m in pain my right eye closes up, my face droops and I look bloody awful. It is pretty obvious I have an issue, but this is not a constant. So it’s not always visually obvious. Some perceptive people may ask “Are you OK?” and I simply respond with “It’s OK, I just have a headache is all”. Some people respond with “Ohh, I get headaches too”. Often I’d like to say “Not like this you don’t” But I don’t, I just smile (crookedly, as best I can) in acknowledgement and say “hmmm, it’s not nice”. To be honest on the bad days when people comment the first thing that enters my mind is full of every expletive known to man, but I ‘try’ to grit my teeth and say nothing. I say ‘try’ cos I’m not always successful and I know I can be a bit short and abrasive, and this can be seen as offensive without any purposeful intent on my behalf.
When I’m around people who have an understanding I might say “I have a brain injury which causes…(symptoms)”. It is not very often I say “I have a disability” because when I have I’ve had comments like “But you’re not in a wheelchair, so it can’t be THAT bad…” (Again another ‘slap-up-side-the head’ moment) or people think ‘brain injury’ = Mental health issue, another negative connotation.
It real truly can be a fine line thing. I don’t think there is a ‘hard and fast’ rule. When I feel comfortable and it’s appropriate I may disclose and depending on the person/people involved will depend on just how much I will disclose, but I must admit, it is not very often that I fully open up about it all. Jez, even I, living through this hell find it overwhelming at times, so how others can ever grasp the magnitude of all of it is simply mindboggling. So for me its often safer to give a bit of a summary, if asked, rather than details, but again this is all dependent on the person/people involved.

I hope this explains my approach a bit, although it may seem a bit garbled (apologies) as this is my interpretation/explanation.

Merl

[Syd]

Occipital,

“A new normal” and “a disability” is now meaning to me powerlessness. My sense of powerlessness is taking away my ability to get things done, or it can be said, I understood power as the ability to get the job done, the ability to shape events, and make the environment conform to my vision. Power was never something I enjoyed in the abstract, as I felt it need to be used continually if it was to be maintained. Now I can kiss my mental power and my physical power good-bye. The worst part for me is powerlessness is closely associated with hopelessness, which makes me feel aggressive impulses.

Maybe my powerlessness, my disability, is helping me to stop my aggressive impulses and believing in my own “larger-than-life” image of myself. Yet my powerlessness is still threatening, even this very moment, as my stomach is upset. This communicates to me my ego is still the center of my life and I am still indulging in it. My stomach makes me want to feed my ego with all the attention that a gardener gives his most prized flowers. I want to give cultivation to my ego and I want my ego to bloom to grotesque proportions. In other words, I want my power back so as to get the job done.

I have worked in agriculture, except these last eleven years. Agriculture is my background from childhood and this background gave me enough to sustain myself in a work ethic. Money then became power for me. I even got caught in money being the yardstick by which I measured myself and my success in life. Above all, money used to be the only thing I could depend on to feel self-sufficient. I even felt the love of a spouse, children, the loyalty of friends and associates were never dependable, only money. I use to feel, only money seem certain, the one sure means by which I could find my way in society.

My head injury is 43 years old and now these last eleven years am thrust into powerlessness and scratching by financially. I have had to face this powerlessness in the penny pitching bank account and my disability physically and mentally. The difficulty is my ego and my bank account is no simple on-off switch. I still deeply identify with wanting to make money, being self-sufficient, and getting the job done. There are moments when I have these profound realizations that powerlessness has me, a break-through, yet it is rare I can count of this. I always return to my ego identification. I always return to deep states of reactivity, deep states of self-alienation, deep states of self-destructiveness, and usually everything in between. These last eleven years have made me feel caught in a web of illusions and self-defeating patterns.

This web makes me feel this inability to accept my powerlessness. Powerlessness is mortality to me and I do not want to submit to death. I also feel I cannot keep being frustrated in my deepest desires, which makes this so involved, so complex and exhausting. This also makes a bell ring, which makes me want to be a natural agnostic and an atheist. I say this because powerlessness is something I cannot believe in nor do I understand it. For me powerlessness is the problem, the stumbling block and naturally I refuse to want to get involved with it. Ah, but I am living in powerlessness.

Anyway, Occipital, I understand that I do not understand powerlessness. It makes my body sick and my mental connections go haywire. Maybe powerlessness is not dangerous as I feel in my body, maybe it is okay to submit to my inability to get things done, and maybe powerlessness can be closely associated with hope. Maybe, falling into a deeper powerlessness is where self-respect and dignity can be formed. This letting go seems to be just this place to begin, just before I fall into alienation and into self-consciousness. Powerlessness, a dirty word for me, and maybe there is innocence and simplicity in it. Yet I have not learned a way to look at my powerlessness and my disability through innocent eyes.

[Adilyn]

The words “new normal” is the same thing as your “disability”. Changing the name doesn’t change what it is. It limits the way you can look at your future. You need to accept you have a disability. If it bugs you when you tell someone you have a disability and they treat you like you are infantile then call it something else. Say something like this is how I am or everything is fine. I believe I was the one that posted the original post titled “finding my new normal” but since then I have learned so much more about my disability. Our disabilities are our normal. Calling it something else just makes it sound better. Most likely calling it something else causes the reaction of others to be less treating you as an infant. Please know that you aren’t avoiding your disability by calling it your “new normal” your just calling it something that can be understood by everyone else.

[Syd]

Adilyn,

You appear to have a way of seeing everything in wholeness and you appear to accept everything as an unfolding for you. This unfolding appears to allow you to see change from moment to moment, as it unfolds for you. The unfolding appears to allow everything to be happening together for you. Because of this flow, in what appears to be an unfolding for you, this communicates a wholeness within you. I speak of wholeness because you appear to allow yourself to rest in your “new normal.” Your ability to rest, just in who you are, offers this hope. Hope is wholeness and I have even read, “We can live without faith and we can live without love, but we cannot live without hope.” Hope is your beautiful gift you offer, this enormous creative dance with life, and you offer me this confidence to rest in hope. Wow, and my gratefulness to you is from my heart.

[Anna1]

Occipital,

Interesting question that you raised. I guess that my own feeling is that everything since the TBI and severe accident that caused it is so nightmarish to me, I cannot bring myself to view this new, altered experience as “normal” in any way, and I cannot conceive of viewing it as “a new normal” because to me that would feel unbearable. If I thought that this shattered life is somehow acceptable, or if I believed that this was how it’s always going to be, I’d not even want to try to recover. It’s just too terrible for me. I have impairment and injuries that I can call a disability, but no more than just that. And frankly, I struggle with even that. Maybe it’s some form of denial, but a huge part of me doesn’t want to even believe that I am “disabled.” I resist letting it become too central to my identity. Instead I just strive for the healthiest live possible, and as I slowly recover, I keep striving towards an increasingly improved quality of life… every day, in every way, I focus on re-gaining skills, strengths and having some healing and peace of mind again.

The dictionary definition of “rehabilitation” is “the action of restoring something that has been damaged to its former condition.” That is how I see myself. To me I just reject the idea that this horrific shattering of my health and life is acceptable. I may never be the same, but returning to a life as close to what I had is the only reason I get up every day. It may be different, and I may even be “disabled” but there is nothing “normal” to me about brain injury. And that’s just my personal view. I can never stop doing cognitive rehabilitation, never stop intellectual rehabilitation efforts, or physical recovery/therapy, and never stop trying to return to work, employment and productivity.

I may even, in time, wind up with a better quality of life than my non-TBI siblings, because I try so much HARDER than they do. I have to. I would never have survived at all if I allowed myself the indulgences that my siblings seem to embrace. I would have died for sure. Two of my siblings and my late mother seem/seemed entirely bent on total self-destruction, with alcoholism, addiction and negativity creating a downward spiral, marked by bad judgment and bad behavior. I refuse all self-destructive habits: alcohol, tobacco, sugar, caffeine, junk food, inactivity, painkillers, etc. and strive all day, every day, to rise above the abyss of poverty and misery the TBI has inflicted upon me. I do not judge my siblings or others, but I cannot and do not share their life-choices or lifestyles.

Slowly but methodically, I’m learning new job skills, computer skills, social skills, even just silly thing like improving my typing. A tiny bit every day. What else would or could I do? I don’t know how to quit, or how to fail to at least try, try and keep trying. I do FAIL all the time, but I have to try. Fall down 10 times, get up 11 times. I cannot speak to other’s experience, but refuse to “quit” on myself. So I guess for me, calling this a “disability” works better than terming it “a new normal” because to me that implies a level of complacency that I cannot accept for myself.

Ten years out, in spite of the mighty struggle, I have re-gained tremendous recovery. It’s just a life-long journey that I know will never end for me. My 89 year old father has Parkinson’s Disease, dementia, and is legally blind. He never accepts his limitations; each day he struggles to be as healthy as is possible. He has hope. I believe that’s why the man is still alive and doing as well as he is at his age, and still lucid most of the time. I miss him so much and know that I’m blessed to have him as an example. I just cannot focus on the losses, but move towards the positive: hope and improvement.

Maybe this is a bit off-topic, and I apologize for that. But I would rather have this TBI, than to suffer from alcoholism and/or addiction. I know I’m lucky to not have alcoholism/addiction AND TBI. But I have chosen a very different path from my siblings, and I think that was one thing I’m getting right. They HATE me for it, and I’m learning that being sober and square is not a very compatible lifestyle with what my siblings have chosen. It seems like the world itself is too quickly bent on destroying me, so I don’t do it to myself. I just want to salvage as much of myself as I can. I WISH they could accept my choices the way I accept theirs, but no, they rage against my refusal to self-destruct. It’s sad, but I couldn’t be any other way than exactly as I am.

[Syd]

Anna1,

I want to jump in here and thank you for choosing emotional sobriety. It even appears you are writing about your satisfaction is not found in having a particular experience. Rather it is the quality of awareness in any experience that gives you satisfying quality. In other words, you appear to be finding satisfaction and pleasure in the journey itself. This, from my experience of 30 years of sobriety from AA, is a sober and clear mind. Your sobriety appears to be learning to keep your emotions balanced and even Bill W., who started AA, did not believe the 12 steps could solve emotional sobriety. Also many people relapse after years of sobriety and it seems to me years of sobriety meets a crossroad where one learns to embrace life without being “storm tossed”. The emotional storminess and reactivity becomes a place of not being lost or swept away by emotional reactions. It appears to me you have chosen emotional sobriety, a creative flow, and even learning the whole flow is one enormous creative dance. Thank you for your choice to live a better life and wanting to use your difficulties to grow. What a special gift you are.