The Summer of Challenges – Facing Fears and Pushing Boundaries

The scariest moment is always just before you start. ~ Stephen King

This spring and summer I will be facing some fears, adjusting to changes, and pushing my own limits. I decided it was time – because I was noticing that I was falling into a fear-based place that I was increasingly uncomfortable with.

The persistent one was about getting on a bicycle again for the first time in years. Not scary for most of us, right? For me – it came about due to my inability to drive anymore due to my seizures, and the docs’ recommendations to stay on quiet streets if I decide to get on a bike again. Not being able to drive any more has often left me feeling somewhat trapped – and that was exacerbated in recent weeks when our local transit service went on strike for a number of weeks. So, recently, when I reached a breaking point of “trapped-ness” I bought a bike  that I found on sale at a local store. I decided it only made sense to ride it back home, especially since I was contemplating joining an MS Bike team at work.

What a fiasco! I more or less walked my new pretty bike home with spurts of riding it…with periods of breathing that sounded like I was coughing up a cow!! Bikes have really changed since I was last on one, and just getting used to the gearing was a challenge. But I made it home…and promptly collapsed on the couch – marvelling that I had not killed myself! My butt was aching and sore – so apparently all those years of biking in high school and university didn’t “keep”! Go figure, eh? And muscles that I forgot I even had were screaming at me. But I loved the rush of success. I did it – maybe not stellarly – but I did it. And the success of it has stuck – so I committed to riding with the MS Bike tour team at work. (Oy – this should be too funny over the next weeks as I “train”…I’ll bring my camera!)

The experience reminded me of a lesson I learned long ago: Feel the fear, and do it anyway!

So I am committing myself to a number of fundraising challenges this spring and summer, including the MS walk and MS Bike tour, as well as a couple of others (like the Blue Nose Walk/Run with the team at All Yoga .)

“Only those who will risk going too far can possibly find out how far one can go.” – T.S. Eliot

Namaste

Carolyne

Related articles

• Why Bike (1000reasonstoride.wordpress.com)
• What A Bike Ride With Friends Says About Your Social Sense (chainringaction.blogspot.com)

The Trials and Tribulations of Getting Diagnosed!

“Worry never robs tomorrow of it’s sorrow. It only saps today of it’s joy.” -Leo Buscaglia

Navigating the medical system while getting diagnosed with anything can be an interesting journey into the trials and tribulations of worry, anxiety, fear, confusion, and uncertainty. Even when you get a diagnosis, you sometimes get un-diagnosed then re-diagnosed when you see new specialists! For some wild examples, see my previous blogs about being undiagnosed by a different neurologist then re-diagnosed…then again this year…my MS diagnosis was questioned by a new specialist, and re-confirmed by my regular neurologist.

You see…I have MS – no, now it’s a brain tumour. No, wait – Now it’s MS. No, wait – now it’s possibly MS and more, maybe still a brain tumour, maybe a genetic tumour disorder. No, wait – Now it’s MS and a seizure disorder…but it’s complicated.

Frankly, I feel blessed that I have a scientific side to me that allows me to question doctors and medical specialists with no fear, no apprehension, and all the confidence of a know-it-all science geek. Geeks rock, eh! A lot of that confidence I have learned through some pretty hard knocks over time, and some very real frustrations, but that is part of this journey we call life.

Recently, I had the dubious pleasure of undergoing a sleep study to determine if I am having nocturnal seizures. Quite the experience to be hooked up to electrodes and straps and clips, then “tucked” into bed as you are plugged into the wall. Then a quick “nighty-night” and the door is closed, leaving you staring in the dark at a little red light – the camera that is watching you. (I swear, if anything weird turns up on You Tube…)

Will that help further my diagnosis? Well…maybe. Maybe not. Right now, my epilepsy neurologists think I might not have MS due to my atypical brain scan, but that I do have a seizure disorder and maybe something else that looks like MS. Meanwhile, my MS neurologists say “P-ffft” to that…that I do indeed have MS as confirmed by the spinal tap results, symptoms, and brain scan. (A possibly quick way to let the docs settle the academic question of MS or not MS would be to let them biopsy my lesion…but, I think a needle in the brain is a bit of overkill for academic reasons, don’t you?)

I don’t care whatcha call it – just let me get on with my life, eh? I’m busy living here!

You see – that is often the hardest part of waiting for a diagnosis: getting on with your life. I have learned over the years to just let the medical teams battle it out on their own while I get on with the business of living my life. Whether you are awaiting a diagnosis for something small or big – the wait can be very difficult.

How to get through the long Diagnosis:

1. Know that no one is better qualified to know about you than you.

2. Gather your own information. Read. Surf the ‘Net. Knowledge gives us a sense of personal control – if nothing else that helps you manage your reactions.

3. Practice patience. There will be set backs, successes, frustrations, little glimmers of light at the end of the tunnel.

Yes – doctors know alot of stuff. But doctors are only human – and they are just as prone to human foibles as the rest of us, including making mistakes or incorrect assumptions.  Nobody knows you better than you do. Keep that always at the top of your mind. Be willing to ask the uncomfortable questions, both of your medical team and yourself. The answers may surprise you.

“If you worry about what might be, and wonder what might have been, you will ignore what is.” ~Unknown

Namaste

Carolyne

How to Seek Clarity to calm the Confusion

“If you worry about what might be, and wonder what might have been, you will ignore what is.” ~Unknown

When was is managing a chronic illness, sometimes the confusion is overwhelming. The antidote is clarity.

I love this picture of my old pup, Nickster. When I look at it, I see my doggy companion of over 12 years, reveling in the calm and clarity open before him. In his wake, the ripples and chaos of churning water are left behind as he continues to move forward through clear waters.

I absolutely love clear calm waters. Most people would agree that calm clear waters can translate to calm, clear minds as we sit and absorb the peace surrounding them.

Turbulent waters have a beauty all their own – but sometimes it is harder to appreciate the beauty. Sometimes fear can spike, if waters are too turbulent, and you are not sure about what may be coming at you, or if you can withstand the strength of the turbulence. If you focus on the fear, you will only be able to see the churning waters…but if you step back, and focus on one aspect at a time…the waters become clear again in areas – despite the strong forces that may be churning them.

Whew – I seem to be on a water metaphorical streak, eh? I wonder where the heck it is taking us?

How to Find Clarity when you feel lost in Confusion:

1. Knowledge is power, as the saying goes.

Clarity comes in many forms – but one of the most powerful methods of gaining clarity when managing a chronic illness is through knowledge. The internet can be an amazing reference source for gaining new insights, new coping tools, a-ha moments…all with the goal to bring some clarity to a state of confusion or chaos.

2. Practice Non-Attachment in the confusion.

Sometimes we can be too wrapped up in something, and not see the forest for the trees. At times like that, it is often best to take a step back, breathe, rub your eyes (figuratively or in reality) and then take a fresh look. Coming at something from a different angle might help you see things you missed before. Observe without judgement.

3. When in doubt, ask. Don’t assume.

It always amazes me when I am talking to people how many times I hear “Oh – I was too nervous to ask about that. I did not want to bother Mr. X about it” or “I didn’t want to look stupid, so I didn’t ask” or some such thing. Ask, people, ask!!! If you have questions or concerns – you are the only person who can voice them. Ask! Seek the clarification directly. (Remember that other old saying – Don’t assume. It makes an ASS out of U and ME.)

Clear as mud yet?

“The truth you believe and cling to makes you unavailable to hear anything new.” -Pema Chodron

Namaste

Carolyne

Finding your Balance between a Rock & a Hard Place

“Fear is a natural reaction to moving closer to the truth.” -Pema Chodron

(Can you believe I held that Crane pose for 4 seconds before falling? Yipee-yahoo! Balance achieved – of a sort…)

I recently found myself struggling to find my balance regarding a number of things, from being shockingly emotionally shut down completely by someone on one end, to struggling to make sense of rapidly changing circumstances in someone’s life and its ripple effects on mine on the other end. In the middle, there was and is all the daily balance struggles to deal with – health, children, work. Whew! Frankly – balancing in Crane Pose on a rock in the middle of a cold Rocky Mountain lake seems simple by comparison, sometimes!

In order to find my personal balance again, I have been focusing on becoming un-invested while remaining fully engaged. Basically – I am focusing on taking my ego out of the equation, and being present, truly present, in whatever moment I find myself. I am finding this to be more of a struggle than I anticipated because my ego is more active and insistent than I realized! For instance, giving advice should have an intent of aid, with no intent of receiving gratitude nor accolades in return. That’s where the ego comes in, because if you find yourself getting frustrated with the advice receiver, then your intention is not true and you are allowing your own ego to get invested in that person’s journey. Another example: if someone shuts you down completely from discussing a topic through deep emotion, it is usually their issue and not a reflection on you, so focusing on keeping emotionally engaged while keeping your ego out so it doesn’t get un-necessarily bruised is the balance needed. So I am focusing on listening more, reflecting more, and taking in more information…and speaking less while keeping my inner witness calmly in the forefront, keeping my own personal ego needs in perspective. Takes a bit of fine-tuning, lemme tell ya!

Since my double seizure episode in the Spring of this past year, I have been really struggling to re-define my balance, physically, emotionally, and mentally. I have had emotional ups and downs due to drug reations, illness, and MS symptom flares…and my motivation has been really flagging.  On the physical side, things keep changing with MS symptom flares, drug reactions and interactions, wacky peri-menopausal symptoms and plain old lack of personal motivation and engagement. It is starting to piss me off, because I have not quite found my personal balance again yet. But, with persistent forward movement, no matter how slow, I will rediscover my new balance…whatever it may be. (The type-A in me wants to snap my fingers and “Make it so, Number One”…but reality is never that quick and easy.)

Funnily enough, this fine balancing act is almost visibly personified as my oldest son and I re-define our relationship now that he has moved on from high school to university and is a young adult. He still needs his Mom’s love and advice…but he doesn’t need me to hold his hand anymore. Jeez – he finally becomes really fun to hang out with, and he’d prefer to hang with friends and get out and enjoy his new life than hang around with his ol’ Mom all the time! Go figure, eh?! (The balance? He has been successfully raised to responsible adulthood!)

Generally, when I start to get frustrated at my own lack of forward motion, it spurs me on to new heights…so here we go! Motivational Boot camp, anyone? Anyone?

“If you lose today, win tomorrow. In this never-ending spirit of challenge is the heart of a victor.” -Daisaku Ikeda

Namaste

Carolyne

Laughter through Tears

“Shared joy is a double joy; shared sorrow is half a sorrow.” -Swedish Proverb

Have you ever noticed that sometimes you can laugh so hard that you eyes tear up? Have you ever noticed that the reverse is also true – that when you are deepest in grief and tears, you will find yourself laughing and smiling and the most absurd things?

My oldest son and I recently shared a moment of poignant vulnerability and laughter through tears of sadness and loss. We recently had to say our final goodbyes to our kitty of almost 13 years – and it was simply awful. This cat had been my son’s study buddy, confidant, watch-cat, and all-round companion since my son picked him out of the litter at the age of 5 when the kitten was 5 days old.  My son and I held each other as our companion passed, crying in each others arms, reminiscing about what a wonderful pet our kitty had been, and laughing over his junk food habit and other little quirks. Saying goodby was painful – but sharing the vulnerability and laughter through tears with my young adult son was precious. I feel genuinely blessed to have such a close and wonderful relationship with both my sons that we can cry and laugh together, openly and with mutual compassion and respect.

Laughter through loss and grief is a coping mechanism – one that can help us through some of the most trying and difficult times, be it death, divorce, job loss or chronic illness. Stages of grief are well known to most by now, as outlined anywhere if you google it. But little is mentioned about laughter during periods of grief. Often, people feel guilty if they feel any joy or laughter when they “should” be feeling sad.

Bah-humbug, I say to that. I will give you a personal example of how laughter helps us work through our grief.

When my mother passed away a number of years ago, my cousins flew in to be with me and help me make arrangements for the funeral. They stayed with me while my aunt stayed with my father. My cousins were always a riot to be with – and their ability to make me laugh was priceless. When I was sleepless, we would lie in our beds and they would tell me jokes and stories about our childhood, featuring my mom, and made me laugh so hard through my tears that my stomach hurt.

When we came back from the funeral, the director handed me my Mother’s ashes in an urn, which was placed in a canvas beach bag emblazoned with the funeral home’s name and logo. We silently got into my car, as I gingerly placed the bag holding my mother’s urn on the floor behind my seat. As I started the car, I began to giggle uncontrollably at an absurd thought that popped into my head. I shared this thought with my cousins, and within seconds, the three of us were gut-laughing through tears of grief…and it lasted for a full 30 minutes where we could barely breathe from the laughter. The absurd thought? I had turned to them and said “Next time I come visit you, we can go to the beach and I’ll make sure to bring this great canvas beach bag they gave us – so we can remember the good times we had, eh? Good times, good times!” Morbid? Definitely! But the absurdity of the situation struck us…and the gut-busting laughter helped reduce the intensity of the deep grief we were feeling at Mom’s loss. I don’t have the bag anymore, but to this day, I look at canvas bags with a bittersweet memory and pang. I remember my mother and my cousins fondly, and feel warmth and love – no more grief.

Embrace your grief. Embrace your joy. Embrace the laughter you find within both and in the zone in-between. Accept the laughter through your tears…there is a reason for such a priceless balance.

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” ~Thich Nhat Hanh

Namaste.

Carolyne