Change and Control

change for the better

I’m not a big fan of change. So when faced with a year that is sure to be chock-full of change, I can feel a little overwhelmed. Ok. That’s actually not true.

I can feel freaking terrified, sick to my stomach, near panic attack, bite my nails to the quick, SOMEONE LET ME OFF THIS MERRY-GO-ROUND called life screaming, “abandon ship! abandon ship!”

I’m not even a spontaneous person. My family knows not to ever throw me a “surprise” party. To me ordinary is extraordinary. I just hate change. For me, it’s all about control. That’s right. I’m a bit of a control freak. There is an upside to being a control freak. I am very organized. I’m punctual and responsible. There are, however, all kinds of negative things that come from being a control freak and refusing to accept change too.

I had fairly significant OCD tendencies throughout my childhood and into my early 20’s. As a teen, I developed bulimia nervosa after facing my first big change moving away from home to go to college. Emotionally, I drove some people bananas with my need to control and drove some people AWAY as a young adult.

If you believe everything happens for a REASON and that there is a life lesson to be learned in everything that occurs, one could hypothesize that my developing acquired disabilities was the best (worst) thing to ever happen to me! My hearing loss began at the age of 25 and was a progressive loss. I wasn’t completely deaf until the age of 32 so I had a long time to adjust and cope. Meniere’s disease was diagnosed at the age of 35, though I suspect I had it from my early 20’s. It, too, became progressively worse over time; in part, because of multiple mild concussions. My health issues forced me to change. To remain independent (something I discovered was extremely important to me), I found that I had to work hard at adapting. I had to embrace change instead of shy away from it or pretend it wasn’t happening.

Living with acquired disabilities means something CHANGED. You have to adjust. You have to make choices about how you will cope and how you will treat the diagnosis or disorder. You have to determine how you enlist others to assist – if at all. What adaptive equipment or technologies are available to mitigate the disability? How are you going to mentally and emotionally adjust? (For acquired disability or illness never occurs without having an impact in other areas of WHO you are…)

At the age of 48, I have lived more of my life adjusting to my new limitations than I did to living in a relatively “worry free” life. Here are some things about change that I have learned.

1. Take notice of changes.

This means you have to really get to know yourself. Habitually take your own “pulse” and see how you are doing. Make note of the readings on your “tension thermometer”. How are you sleeping? How are your relationships?

You don’t want change to take you by surprise. One must deliberately brace and expect changes. Be on the look out. Identify health (or mental health) changes.

2. Accept change with a positive attitude.

You cannot stop change, nor control it, but you can change how you react to change. We’ve all see the serenity prayer before. For those of us with acquired disability or illness, however, following these words of wisdom can be very freeing.

God … grant me the serenity
to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.

3. Learn to relax. 

Even up-tight control freaks can learn to relax. One of the most important things I learned in vestibular rehab was how to relax when falling. We naturally stiffen up and become tense when we are “on our way down”. I learned to relax my leg muscles so that I immediately dropped to my caboose instead of falling like a tree cut off at the base.

I have also learned to take “me time” every single day and refuse to feel guilty for taking the time to do so. It may be something as simple as looking through a friend’s collection of photographs. It may mean some personal journal time. I might choose to read a good book – that has nothing to do with psychology or my dissertation. I may burn my favorite candle while cuddling with my assistance dog on the floor in the dark.

4. Ask for help.

It took me so long to learn that it didn’t make me weak to ask for help. I chose to be partnered with an assistance dog so that I didn’t have to ask for as MUCH help from other people. In spite of this life-changing decision, I still occasionally have to ask for help. When I do, I don’t apologize first.

“I’m sorry to have to ask you this, but could you help me? I’m so sorry. I hate asking for help, but do need your assistance. I’m sorry I’m bothering you!”

Please don’t ask for help like this. It’s rather pathetic, isn’t it? Yet, we tend to react to even THINKING about help as if asking is something to apologize for when doing the asking. Honestly, most people are glad to help.

If you really have problems asking for assistance, at least learn to ask others “how can I do this task independently?” Brain storm with OTHERS what you can do to remain independent. I have run completely out of ideas about how to do something safely, only to discover through someone ELSE a “brilliant” work-around.

5. You are changing, but you are still You.

Frankly, all of us change as we grow older. The changes may occur physically, emotionally, or mentally. Yes, change may seem more difficult when it occurs as the result of acquired disability or chronic illness, but ya know something? You are actually stronger for it. You had to adjust and perhaps been forced to make changes. The core of who you are does not change. We tend to fear that being “disabled” becomes our new identity. No one signs up for that, and it is never chosen. So when it happens… know that who you are hasn’t changed. If anything you become a better version of you.

One of my favorite quotes about change was written by John Eliot. “As soon as anyone starts telling you to be “realistic,” cross that person off your invitation list.” We can’t avoid negative people. They will cross our path. They will see our being differently-abled as license to give-up and quit. They’ll tell us to be realistic and stop aspiring for “more”. You may not be able to avoid these morons people, but you don’t have to hang out with them on purpose.

So I gear up for a big year of changes for me. I’ll be finishing up my coursework in school, retiring my assistance dog, and face some possible surgery. Those all seem so darn negative, but there’s always two sides to every “coin”. My dissertation awaits – and geesh, but do I love to write or don’t I? I’m retiring Chloe, but I have my close-knit Fidos For Freedom family and friends supporting me with a successor dog eventually entering my life. I hate surgery, but really look forward to getting to the bottom of some of the neurological issues I’ve been having. I can identify and sense these impending changes with a weird sort of relief. I have discovered that change can be good. Relinquishing control can be freeing.

Denise Portis

© 2015 Personal Hearing Loss Journal

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Cats Get a Bad Rap

CatAndMirror

I love dogs. However, I do love cats, too! I don’t currently own a cat which is just weird for me. Cats have a bad reputation though, don’t they? Think of the phrases we use about cats:

1. Tom-cattin’ around.

Males (or even females) slinking around at night looking to get some-some. (Jus’ tellin’ it like it is, folks). Apparently the name of said feline is also Tom.

2. Caterwauling

This is usually a female cat screeching and yowling around while in heat. It is used to describe humans at great risk to the idiot males who determine it would be funny to do so.

3. Like herding cats

This is impossible. They don’t run in herds so aren’t we the stupid ones?

4. Let the Cat out of the Bag

This means to tell a secret. Frankly if my cat was ever in a bag it would not be a secret. The whole house would know. If you don’t understand, you’ve never owned a cat. They are either playing in it by choice, or stuck in it due to HUMAN error.

5. Cattin’ around

Similar to “tom-cattin’ around”. To wander aimlessly looking for entertainment – usually resulting in feline delinquent behavior.

6. Fat cat

Evidently this means loaded, or very rich. I do NOT use this phrase this way.  At the time I was talking to an overweight cat.

7. Curiosity killed the cat

Cuz evidently even though it 1) looked dangerous, 2) smelled dangerous, 3) sounded dangerous, they couldn’t help but investigate anyway. Which leads to #8

8. Cats have nine lives

They get killed a lot. Or, at least do really stupid things that almost result in their demise.

9. Cat got your tongue

Ewww. Just ewww. Yet, it means speechless. This happens to me a lot. *rolls eyes*

10. Cat walk

To walk with splendid balance and grace with a sexy little swing of the hips. Evidently models walk on this. Perhaps cat calls came from this practice.

Cats can be pretty special critters though, and even better fur-babies. They sure get a bad rap, however. People seem to either love ’em or hate ’em. I find few who are indifferent. I’ve met some pretty special cats that behaved very un-cat like at times. And frankly? I’ve had some cats climb up in my lap and allow me to pet them while they purred my cares away more than once. They can be extremely intuitive.

People with Disabilities Get a Bad Rap

I don’t like identifying as a person with a disability. It is the language used by the laws that protect my rights as a person with unique challenges, however, so I accept the “label”. Folks with disabilities get a bad rap though.

Here are just a few of the things I have heard:

1. We complain. A lot.

Evidently about anything and everything; but mostly about our disability. I mean… it’s as if we live with it 24/7 or something. Pretty lame, aren’t we?

2. We are lazy.

In the decades I have mentored and worked as an advocate for persons with disabilities, I believe one of the toughest diagnosis is that of CFS (Chronic Fatigue Syndrome). There are some other diagnoses that are closely related in which the primary symptom is extreme and debilitating fatigue and/or pain. It hurts to do anything. So sometimes, complaints just slip out of the mouths of these brave people. Maybe curse words too, but STUFF SLIPS OUT. It is very, very difficult to live with one of these diagnoses and I admire these folks. I do.

3. We are extremely dependent.

Most of the people I know who are differently abled – work very hard at learning to do things DIFFERENTLY so that they can remain as independent as possible. If you knew how hard it is to ask for help you’d never roll your eyes at a request from someone living with chronic illness or disability.

4. We will never contribute to society.

Geesh. This is so, SO wrong. Most of those I know living with a chronic illness or disability are super busy working in their community. They “give back” at times to the point of going to far and doing to much. Everyone has a desire to be needed – to matter. This includes people with disabilities.

5. We are drama queens/kings.

I’m a bit of a drama llama. I prefer this term because I am crown-less yet recognize I, at times, spit for attention. But seriously… most of us HATE attention. We are trying to just “be normal”. We haven’t created our own song and dance in expectation of applause.

6. We are hypochondriacs.

The thing about long-term disability or chronic conditions, is that you become an expert on your diagnosis. As a matter of fact, at times, you know more than your doctor does. You have researched and investigated everything about your diagnosis and in so doing have learned about similar diagnosis or co-morbid diagnosis. We seek to understand it because we are trying to survive.

7. It’s all about us.

There are selfish people with disabilities and selfish people without disability. Many of us (just like you) work hard at making a difference for others. We actually hate the attention and don’t want it to be about us. We love being able to do even small things to help someone else.

8. We will die young.

Many people with disabilities live an average life span. But folks? They do so never ditching the diagnosis. This makes them WARRIORS. This makes them courageous. This means we could take some lessons from these people.

There are also those whose diagnosis mean their life span will be cut short. These people are still warriors. They simply have less time to prove it to you. So make it a little easier for them and stop judging and embrace their uniqueness. None of us are promised tomorrow. Even those without serious and permanent diagnosis could be gone tomorrow. Shouldn’t we all work to make a difference TODAY instead of write people off as if they have no future?

9. We don’t care about our health.

Yes. Some diagnosis make it really difficult to move, to exercise, and to live a healthy lifestyle. Sometimes people who are differently abled gain weight. But added pounds does not mean they don’t care about their health. As a matter of fact, most of us have learned that dietary changes, moderate (doable) exercise, and holistic approaches can improve the quality of our life. Don’t preach at us to become “juicers” or vegan, or organic shoppers. Don’t tell us to just get out and MOVE. Folks who live with a long-term illness or disability are often avid health nuts. They may not look it, but they work to keep things such as blood sugar, cholesterol, and blood pressure in control. Please don’t judge.

10. We are disabled.

Being disabled does not mean not being able. We are very able. We likely just do things differently. We are still more LIKE you, than not like you. We feel. We love. We get pissed. We yearn to connect. We throw our dog’s ball and scratch our purring fur-balls. We are very able. If in doubt, get to know us and discover it for yourself.

Denise Portis

© 2015 Personal Hearing Loss Journal