Tag Archives: epilepsy

Chronic Illness and Mental Health: Ghosts We Fear to Discuss

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The moment in which the mind acknowledges ‘This isn’t what I wanted, but it’s what I got’ is the point at which suffering disappears. ~ Sylvia Boorstein, Happiness is an Inside Job

Did you know that today, February 12th, is mental Health Awareness day? It’s a day for talking about what most of society wouldn’t talk about in the past. The stigma is HUGE.

Well, by now most of you know how I feel about stigma!

Depression is one of the “side effects” of a chronic illness, like MS… a struggle with maintaining good mental health. Personally, I call my own struggle as a struggle with the Ghosts of Lifetime Past. Let me explain…

What I have noticed over time for myself is that as my MS has progressed, so has my own awareness and understanding of myself – but in ways I never could have seen coming. For example, PTSD (Post Traumatic Stress Disorder) is a fact of life for me now…for various reasons and at various levels of complexity. When my symptoms of fatigue and pain pull me down, I tend to feel like a burden to family and friends. (Rationality has nothing to do with it!) I then can tend to feel depressed and even more emotionally exhausted…and I want nothing more than to “escape” from this burdensome-ness by disappearing somewhere, anywhere. I understand now that this comes from past emotional trauma from a very young age in which I was the oldest child of an alcoholic parent who would insist that our entire family would end up living on the streets without a home nor food and in rags if I, as oldest child, did not “shape up, do more to take care of the house, and be more responsible for my siblings“. I was 8 years old when that particular burden began being laid on me regularly. (This typical “burdening of the oldest child” usually came after my parents fought over my father’s alcoholism and my mother was ready to kick him to the curb.) So for me – I can begin a cycle of feeling very depressed when my symptoms flare up and create change or havoc in my life. I feel like I am failing at keeping the family together, happy, fed, successful. These are literally ghosts of my past – being exacerbated by symptoms of illness in my present.

But – Why do I understand it now? Because I talk about it. Because I look into myself. Because I seek self-awareness everyday.

The thing is – everyone has old ghosts. And chronic illness can raise these ghosts in the strangest ways and at the strangest times. It can create new ghosts. The changes brought into our lives by chronic illness can also make us go into hiding as we avoid talking about painful emotions, fears…depression.

If you are feeling depressed – talk about it. Now. Tomorrow. With a friend, relative, professional…with whomever you feel most safe. Just talk about it.

Namaste

Carolyne

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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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Serenity in the Challenge and the Chaos

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“Life is either a daring adventure or nothing at all.” ― Helen Keller

Whew – life can get chaotic sometimes, can’t it? I think of my own life right now – talk about chaos! Sometimes I am exhausted just thinking about it: a new marriage; long-term things coming to a head at work; moving an entire household; taking on a new cause and awareness raising initiative; raising teenagers; and staying on top of my health management. Keeping balance through our chaotic times can be a challenge in itself.

Life can be full of challenges in periods of chaos. And – sometimes challenges can bring us adventure – and sometimes that very adventure brings us serenity and inner peace.

Even with all the “busy-ness”, I have been feeling more “me” than ever before in my life. Part of it is that I married my life partner, BFF, and soul mate. Part of it is that I am “able”, despite my health constraints. But a big part of it has been facing a huge challenge and taking a little slice of “me” back from the constraints of my chronic illness – in this case, by getting back into the water.

Synchronized swimming is back in my life – and, boy oh boy, did I ever miss it and hadn’t even realized it! I am a water baby at the core – always have been. I am never more relaxed mentally, spiritually, and emotionally than when I am in or near water. My personal challenge is to be fully active and even competing in the Masters Synchro world by my 50th birthday. That is not that far off. The biggest challenge was getting back in the water itself – knowing that a seizure in the water is a dangerous thing.

You see, I want to raise awareness for the Stigma against Seizure Disorders as I travel this journey I call my life. (Look for a facebook page down the road. Yup – more to keep me busy and challenged!) Raising awareness means being transparent to a large degree. That is, in and of itself, a challenge. It means disclosing (repeatedly) that I have a seizure disorder – but that I don’t let it stop me from living my life to its fullest potential. It means telling each lifeguard what I need them to watch for and do. It means making sure that my coach knows what my “deal” is – and making sure she is comfortable with it. It means facing the fear every day. It means working every day to keep motivated, no matter what.

But these very challenges are the fuel that fire my inner peace. Knowing I may help just one person by sharing my experiences fuels that fire, and brings me a sense of serenity. Knowing that I have the courage to face a fear and break the social assumptions by getting back into the water, despite all the warnings about the dangers – that brings me a sense of serenity and inner peace. (Being underwater in the cool blue – that alone brings me serenity.) That’s what works for me. That, currently, is my daring adventure!

Finding serenity and inner peace – that is a personal journey, and each individual defines that for themselves. Serenity and peace in the challenge and chaos – I firmly believe it can be found…if you allow yourself to see it and recognise it. What does it look like for you?

“The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled.  For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.” ~ unknown

Namaste

Carolyne

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Forging New Ground and Setting Goals

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“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’
You must do the thing you think you cannot do. ” ~ Eleanor Roosevelt

Well, I am back! Didja miss me?

I took some time off from my busy-ness to rest for the past few weeks over the summer, as the heat was taking a toll on my health by flaring up MS symptoms (even my old one of MS Hugs – not fun). The rest was well worth it – mentally, physically and emotionally – though I can’t really say I was not busy!

The busy-ness seemed to morph somewhat, rather than disappear. Isn’t it amazing how you can take something of you to-do list, and other things magically appear to take the place of the things you removed! Case in point: My upcoming next month or so I will hopefully be moving into a new home that we offered on, getting married, working full-time and balancing life while working on some large projects at the office, and also trying to forge some new ground.

What do I mean “forge some new ground”? Well…Having the time to “rest’ (HAHAHAHAH!) allowed me to look inside and prioritize what I needed to manage most – including wrapping up old issues that I had pushed to the back-burner to “deal with” later. One of those issues was my fear of getting back in the water…fear created by my history of seizures.

You see, sometimes living with chronic illness can feel emotionally like someone is slowly chipping away at you – who you are, what you can do, what freedoms you can still enjoy, and so on. For me, the seizures came with a fear of being in the water…because that is a very risky place to be during a seizure. I had stopped taking baths (don’t worry – I do shower :) ; I had stopped my competitive swimming (mainly because of the virtigo); I had given in my driver’s liscense which effectively reduced my freedom. And I felt like a vital piece of me had been suffocated by my seizure disorder with all these little pieces going down. Combine that with the stigma against seizures that I experiences in the spring…well, if any of you follow me regularly, you know that that is a trigger for me to “Face the Fear” and make a change.

So – what did I do? I set myself a  big goal and a cause: I will be swimming competitively again by my 50th birthday and raising awareness of stigma against Seizure Disorders.

I have joined the local Masters Synchronized Swimming team. I have roughly  2 years until I turn 50 (fifty) years old – and I plan to be in the water, doing a synchronized swimming routine competitively, and showing people that no matter what, seizures or no – it CAN be done. (And – also to show that being 50 years old or over does not means everthing stops…one can still be at the top of their game. Though maybe the games rules are a bit different?)

Facing my first fear was to get back in the water. And I did! I got back in, and my ol’ body remembered how to do the synchro figures – though I gotta say, my “ballast” feels alot different than when I was 17 years old and competing! I completed my first 90 minute training with no problems (other than recognizing that I haven’t used certain muscles in a LONG time…and I have a lot of work to do! Thank God for yoga – it will be my rock for this in many ways – including core and flexibility!)

How do I feel after my first session in the water? Physically – exhausted! But emotionally and mentally? Fantastic. Determined. Courageous. Powerful. I faced a fear – the fear of getting back in the water – and did it anyway!

Does it cure my MS or my seizures? Heck no! But it does increase my confidence in my own ability to create and live my life in the way I see fit, no matter what my illness throws at me!

“Decide that you want it more than you are afraid of it.”~ Bill Cosby
So – what’s your goal? Is it big? Small? It really doesn’t matter – it just needs to fit YOU! (Size is just a matter of perspective, anyway, ain’t it?)
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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