Tag Archives: self-esteem

The Button and Identity

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“An identity would seem to be arrived at by the way in which the person faces and uses his experience.” ~ James Baldwin

Can a chronic illness like MS affect your identity? You betcha! You see, personal identity (our sense of self) tends not to be an unchanging concrete thing. It tends more to be a dynamic concept that  fluctuates with life experience.

Our sense of self includes anything such as life/professional roles, personal attributes, behaviors, and aspects that we consider most important about ourselves. The aspects that contribute to our self identities can be things like occupation, hobbies, athletic ability, family relationships, marital status, disabilities and health…among many others.

My own identity can be shaken at times by the twists and turns of my health due to multiple sclerosis and seizures. And often, the symbol of that comes in the form of a button…a remote button I wear around my neck so that if I fall or drop due to a seizure, emergency personnel will be called and sent directly to me, even if I am unconscious. I have a love/hate relationship with that button. It is because of the button that I can be alone and maintain my independence. It is because of my health condition that I need the button – so when my health is at a lower ebb, and I have to wear and count on that button – it becomes a symbol of my dependence and a perception of freedoms lost.

In the last few weeks, as a result of the overwhelmingly busy schedule I have been keeping with workload, travel, wedding, moving, packing, unpacking, and so on… I have ended up dealing with a deeper MS exacerbation physically than I have in a while. My muscles are weaker than normal, exacerbating my spinal injury, triggering more weakness, and so on. As a result, in order to ensure my safety, it has been important for me to wear my button “just in case”. This “just in case” part is primarily because we don’t know if a seizure will be triggered or not. I end up feeling “less than” because I need to slow down. I know – it is not logical…but it happens sometimes. (That’s where a good support system helps!)

That’s where identity comes in, because when you can’t do what you are normally accustomed to do, it can affect your sense of self. Sometimes we can feel a sense of guilt for being unable to participate at a certain level. Or we can feel isolated. It is imperative to remember, at that time, that we are not just one thing (i.e. wht we do, or how we do it, or…). We need to ensure that we don’t allow what we can’t do in one moment to impact our sense of identity in any moment. And it can be easier said than done, depending on our own personal sense of self.

Every new adjustment is a crisis in self-esteem. ~ Eric Hoffer

Now where did I leave that darned button?

Namaste

Carolyne

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Never Say Never…

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“The best way to find out if you can trust somebody is to trust them.”― Ernest Hemingway

Have you ever found yourself saying “I am never going to …something, something …again!” And you really meant it?

I found myself saying that about marriage and pursuing relationships, and that “never” sentiment was reinforced over the last years as my health issues evolved and became more “dramatic”. You know the saying “Once bitten, twice shy”…well, that was definitely me – especially when it came to being able to trust someone to understand or be able to handle life in the chronic illness lane with me. Yet I got married just this month…after almost a decade of saying (and meaning) “Never again!” And I did so with full trust and deep happiness. My husband is the kindest, gentlest, most patient and loving man I have ever known. Trust is instinctual for us together – he’s got my back, and I have his – no matter what comes down the road we are traveling together. I trust him with every fiber of my being.

“Have enough courage to trust love one more time and always one more time.”― Maya Angelou

Trust. It’s a funny thing – trust. It’s just a small 5 letter word…yet it is such a huge deal. And trusting yourself – that’s huge, too. One thing I have noticed over the years of dealing with chronic illness is that as my illness evolved, my trust in my own abilities became shakier. My ability to trust my own body to “have my back”, so to speak, goes through ups and downs – especially since my seizures have no known trigger and have been so violent. Some days I can’t trust my brain to function the way I need due to fatigue and brain fog. Other days, I am firing on all cylinders and can trust my abilities to take me to the moon, if needed.

Chronic illness can lead to various forms of distrust and mistrust – distrust of our own bodies to carry us through our daily lives; mistrust of our professional circles due to worries of illness stigma or biases; uncertainty about the future of relationships and the ability for family and friends to cope with the fallout of chronic illness over time. This makes it challenging to go about daily life – and some days can be much more challenging than others. But the thing is, we have to find a way to come to terms with changes in our lifestyles and bodies – so we have to trust our bodies and trust ourselves to handle whatever develops. We have to trust our friends and families to be there with us, to be patient with us, to try to understand us and what we are going through. We have to take the risk to trust.

“Mistrust makes life difficult. Trust makes it risky.” ~Mason Cooley

From where I am sitting right now – I gotta say: Never is a really long time – and trust is always worth the risk.

Namaste

Carolyne

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Illness Stigma: A Funny Thing Happened to me on the Way Home…

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Follow the path of the unsafe, independent thinker. Expose your ideas to the dangers of controversy. Speak your mind and fear less the label of ‘crackpot’ than the stigma of conformity. And on issues that seem important to you, stand up and be counted at any cost. ~ Chauncey Depew

You know, it still shocks me when I run into bias or stigma against illness. It shouldn’t – but it does.

Having MS, there is a stigma – a stigma regarding chronic illness and personal capacity. People assume you will quit work immediately, or that you will never  be able to participate in activities, or that life is generally over for you and your family. (Seriously – I have run into that.) But much of that can be mitigated to some extent by personal health management. Admittedly, many people who are hard hit my MS have visible limitations, but a large part of people with MS lead quiet lives managing their symptoms, and doing everything in their power to lead as normal a life as possible. And typically, the first reaction a person shows to hearing you have a chronic illness like MS is compassion and sympathy.

Not so with a seizure disorder.

I was dumbstruck the other day when I was traveling home from a business trip. I was travelling home alone from Calgary, and I did as I had been advised by my neurologist for such cases: I informed the flight boarding staff that I had a seizure disorder, and gave them pertinent information. (Note – I have travelled many times alone on business and done this very thing before.)

Much to my surprise, instead of being met with compassion and gratitude for my disclosure (as this helps them do their jobs proactively), I was met with fear and put on notice that I may be refused boarding. WTF????

I was shocked – then livid. Thoughts ran through my head simultaneously, such as: “ExCUSE me?” “Why did I say anything?!?!” “I have survived childhood & domestic abuse, MS and multiple seizures – and you think your fear is gonna stop me from getting home on this plane??? HAH! ” “How DARE you try to keep me from my family through your ignorance!” “What’s next? Are you going to refuse diabetics boarding privileges – they could have an urgent situation. What about people with high blood pressure? Past heart attack patients?”"This person has no clue about seizures – I should take the opportunity to educate her now…seriously!” Of course, all this ran through my head in split seconds – and I did not say any of this out loud.

I didn’t go all “corporate dragon lady” on them (as my sister likes to say), but I definitely stood taller, and my voice got much firmer as I dealt with them. I became seriously resolved, and solid as hell.  In the end, the issue was resolved, and I boarded the plane.

But it got me thinking about the stigma – and one’s ability to deal with it. Seizures, as I have discovered, seem to evoke a fear and stigma quite different than that of MS. MS seems to be “socially acceptable”, for lack of better words. But seizures…well, seizures are scary. Seizures can be messy. Seizures means knowing what to do in an emergency. Seizures mean…well, for someone not educated in what seizures are…seizures mean that the person is often perceived as a walking time-bomb, and you don’t want to be around a bomb!!

I consider myself lucky – lucky to be the person I am, as educated as I am, and as strong as I am. Yes – I have random tonic-clonic seizures. Yes, they are scary, and yes, I lose consciousness which means I need help. But I also have a brain that works. I am very well educated and I have the ability to manage my health to mitigate health issues. And I have the self-esteem and self-confidence that comes from age and experience to stand up to yahoos who express un-informed fears and stigma. I am not afraid to stand up for my rights, and when faced with such bias, I have the ability to make myself be heard.

But what about those people out there that DON’T have that life experience, or that self-confidence, or whose self-esteem is already hard-hit due the their seizure disorder? Those people who have been rejected, turn away, left by friends or family, as a result of life and/or illness? Running into that kind of bias and stigma that I experienced from an airline attendant can be absolutely devastating. Self-esteem can be seriously damaged. This in turn affects how that person copes.

Bias and stigma like that make people hide themselves. And no one should have to hide themselves – seizure disorder, chronic illness, or other.

I believe I now need to look deeper into this cause and see where I can help make a difference…no matter how small.

“One must have the adventurous daring to accept oneself as a bundle of possibilities and undertake the most interesting game in the world, making
the most of one’s best.” - Harry Emerson Fosdick

Namaste

Carolyne

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Riding the Emotional Roller Coaster!

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I’m not afraid to write my feelings in songs. ~ Taylor Swift

Image Source: Wakeuptiger.blogspot.ca
http://wakeuptiger.blogspot.ca/2012/03/feelings.html

Thanks to adjustments in my seizure meds, I have been riding the emotional lability roller coaster lately (so to speak). Emotional lability – sounds…weird, right?

Here is a dictionary definition:
emotional lability – a condition of excessive emotional reactions and frequent mood changes.

Sounds almost benign, eh? Well here is a description that is a little more apt:
The symptoms of emotional lability might vary among individuals and in frequency of occurrence. Fits of laughter or crying jags are two examples. Some people do evidence this most with explosive tempers, and there can be instances where people will experience all three emotionally excessive expressions at varied times. When these expressions occur, it’s often daunting for the people undergoing them because many people know that their emotional response is in excess to the circumstances. It can even get embarrassing for some individuals or be a condition that makes them withdraw socially. (source: http://www.wisegeek.com/what-is-emotional-lability.htm)

So what bring this on? It can be a symptom of degenerative brain disorders like multiple sclerosis. It can also be a side effect of some medications.

In my case, it seems to be a bit of both going on – MS-fatigue induced lability, as well as Seizure Med induced labaility! Erg.

In recent weeks I have become more weepy off and on, with the weepiness triggered by …well, sometimes absolutely nothing, …and at other times, triggered by stuff that should either make me furious or make me just go “awe…how sweet”!

In order to sort it out, I have taken a bit of time off work (doc ordered), because the high stress at work from the effects of cutbacks and such has become quite toxic. So, once off work, the stress lessened, especially as my sleep increased significantly…but the crying continued! Ack! This time, the crying was happy crying, from Mother’s day and such. But the waterworks would not turn off! (Very frustrating to me, but highly amusing to my family!)

As I have gotten more sleep with long afternoon naps, I have become much more tear-free. Go figure, eh? It would seem that somewhere along the way, I put my need to seriously manage my MS fatigue level to the bottom of my priority list…and my body responded this time not by dropping me with a serious seizure, but by making my emotions rise to the surface in the form of weepiness! Somewhere along the way I had forgotten the importance of me taking the rest I need when I need it – and, ironically, the privilege of being accommodated for working from home was making me feel guilty for taking that rest. Stupid, eh?

You see, one of my seizure meds has a known side effect of weepiness and crying. While I had managed to keep it under control for a while, the change in meds, combined with the very high stress at work, and my growing deep fatigue, seemed to have led to the teary times being more than I could manage.  And while one doc wants to put me on an anti-depressant to counter the side effect of the other med, another doc on my team wants me to stay off antidepressants, and lower the seizure drug dose, while upping a different seizure drug.

Talk about russian roullette, eh?? But the positive in all of this? I have not had a siezure in over a year now – despite the high stress! Given that high stress (psitive or negative stress) seemed to be a possible trigger for my seizure, this lack of seizures to date hopefully means that the seizure meds are working.

So, in the scheme of things…what’s a few tears here and there, eh??

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” ~ Alan Watts

Namaste

Carolyne

PS – This Bruno Mars’ video says it all…

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Life and Trust and the Ability to Fly

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“I’m flying, Jack! ” ~ Rose De Witt Bukater

This weekend marks the 100th anniversary of the sinking of the Titanic. Living in Halifax for this anniversary has been very interesting…larger than life in someways, and weirdly revealing in other ways. Revealing in that while something as epic as the Titanic exists, what it all really boils down to is trusting the decisions you make every day: Trusting yourself to fly in the face of what seems insurmountable.

One of my all time favorite movies has been and is James Cameron’s Titanic movie. The picture I have above is, to me, one of the most inspiring pictures – because it depicts the first step in someone’s ability to trust themselves and eventually fly free. Why? Because the character of Rose opened her heart just a bit to the possibilities and positive energies of the world just by placing trust in her own abilities, fledgling though they may be, to really fly in the world – recognizing the support around her for the first time. Her eyes were opened to a whole new world and her trust in herself was sparked, to be fueled into a roaring fire.

Confidence and self-trust basically come from the emotional state. Confidence is your ability to cope and depend upon yourself to create a reality that is dependable. When you are dealing with tough situations in life, like a crisis or a chronic illness that must be managed, having self-trust is a critical key to that coping. It allows you to assess the situation, and make decisions – and trust your own decisions. Is it scary? It can be. It can also be the easiest thing in the world.

For me – my self-self trust is something I value greatly. (And somehow, as I have aged, I have noticed it becomes much stronger! All that life experience and wisdom gets packed in the brain nice and tight…or maybe too tight, eh? :) I trust that every day, using all the knowledge I have learned over the years, I can make decisions to keep moving me forward on my own path, unique as it is – no matter what my health throws at me or otherwise.  (And yoga’s teaching & benefits have definitely helped me along that path.)

What I have learned is that there is no such thing as a mistake in life – every experience is something that can be learned from. This I trust – because I trust myself to see the experience for what it is (whether a seizure or an MS exacerbation or something else in life), to find a way to turn negatives into positives, and to generally find the right path forward, even if I may have stumbled off it. My very training as a meteorologist taught me a good part of that – by making self-trust a huge part of the job. You have to trust your information in a smart way, assess and analyse it, discard what has little value, make a decision and trust in your decision. Don’t second guess yourself – as that undermines your own self-trust. Even if that decision turns out to be the wrong one, don’t distrust yourself – you made the best decision with the information you had. You do better when you know better. So, amend. That’s part of the life journey.

“Life is like forecasting. You make a decision based on your best analysis, and if you’re wrong, you change it.” ~ Jim Abraham, Environment Canada Meteorologist

No matter what you are going through in life, there will come a time for  you to fly. Trust in your own ability to do just that!

Namaste

Carolyne

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