Listen and Hear Me

Listen and Hear Me

Listen and Hear Me

How do you know when it’s all worthwhile? How do you know that everything you’ve put forth is right? How do you know when you’ll be hurt, or when you’ll be healed? How do you know what step to take next? Will it be for you, or for the collective, or some other incomprehensible congress? How do you know…?

Sitting – soaking – sinking into my thoughts; my insecurities, my fears. Immobilized by my own mind, though my body has already claimed this control, I feel lost and don’t know how to fix this; this feeling of gross uncertainty. I seek council, guidance, and support.

‘Help me, God,’ runs unbroken through my mind – thoughts of desperation. I reach out and feel nothing; out again, feeling walled. I retract my reach and wrap around to find comfort in myself – I will listen.

We call unceasing talk a “broken record.” But in saying this, do we in fact break the record? For though we communicate through sight, sound, body, and pen, it is the security of being heard – listened to and understood – through which we know our wondering can be finite; and if broken prematurely by impatient annoyance, risky leaps of a decisive nature are taken; some vital, some not. So listen and hear me; and I will do the same.

P . M . A .

P . M . A .

P.M.A.

Someone recently told me that I don’t have MS, and with assuredness told me that I actually have P.M.A. Stricken, choked, down-right puzzled as to why this person would say that to me after my very personal disclosure I instinctively raised my defense, building high its walls, and ready to rebuke this potentially false statement. Hesitant, however, I am to act out this defense so I look towards them, pain clearly drawn in my eyes. ‘Do you know what P.M.A. is?’ they question.
I reply, ‘No, what is P.M.A.?’
‘You suffer from a Positive Mental Attitude!’

I will not, without a doubt, ever forget this very surprising and uplifting conversation. It’s, now, roughly two weeks later and I am STILL going over it in my head and how this individual drew this about me from a mere 20 minutes of knowing me. What an impact this experience has had; one that continues to grow. I am stunned that someone was able to see my perseverance, my drive, to overcome having MS.

A large number of those I tell have the same response, ‘You’re too young!’

My answer to the congress: ‘No, I am not too young to have MS.’

To give the benefit of the doubt, I can understand this exclamation is not to tell me that I cannot possibly have MS; that I must be doing something wrong to be affected at such an age. I can understand it is a typical mode of sympathy, possibly routed from ignorance, primarily used to send along condolences without saying something that may otherwise actually be offensive, so I do appreciate the sentiment rather than feel condescended.

Today, this same P.M.A. individual said they like when I smile and when I smile at them. My father tells me, ‘Have a good day and don’t forget to let your little light shine’ – referring to the song This Little Light of Mine that I used to sing when I was young all the time (and I do mean all the time).

Hearing these positive remarks – P.M.A and like of a smile – assure me that I am indeed ‘letting my little light shine.’

I began this blog with the hope and the motivation to spread my experience with those who wish to read my words and to spread some light; for myself and for any others feeling drowned in darkness and defeat.

Going forth, I will most certainly add P.M.A. to my list of sufferings and credentials; and I will continue my education in the practice of shining positivity.

For Your Entertainment

For Your Entertainment

Entertainment. A pleasurable experience we all incorporate into our lives; a societal diversion of which we also seldom have complete control. It is a motivating force, an uplifting hoist, an escape from reality, and a chance to relate and find a community that is alike you. As I cruise through life, I find that I go through my daily interactions in a very similar, very repetitive pattern – acting aloof to break the silence, for hopes of a chuckle and to flip the frowns – all for the sake of entertainment.

I suppose this communicative pattern that I’ve observed is more or less innate – almost automatic – that I desire to entertain and make light of shady spaces. As early as I can remember, I’ve danced and entertained and never once despised the exposure of my passion to those eager to experience it. No doubt, not all forms of performance did I feel as driven to pursue; for example, I could never comfortably sing alone in front of an audience no matter how much I loved to sing. But the dancing, I could not perform enough and I now wish I’d seen that endless passionate pursuit earlier; for I loved to entertain.

To be successful in bringing cheer to those around me is more rewarding than I can explain. At work the other day I found myself standing up in front of my exercise crew (a group of lively and energetic seniors) walking like a “spotty dog” to demonstrate what I was trying to avoid during the sitting exercises. Spotty dog is a term that I learnt while dancing on the cruise ships. It refers to the action of walking, moving, dancing while leading with the same arm and leg; in opposed to stepping forward with the right leg and swinging the left arm, which is much more natural and essential for maintaining balance. As I finish my demonstration the group giggles and I realize how foolish I just made myself look, but I did not feel humiliated. Deep within my soul I wanted that reaction. I wanted to entertain and to see the enjoyment from my enthusiastic demonstration.

This desire to entertain has aided my methods of coping with my MS; which I say with complete certainty. When my sister was living with me, my MS would be a key contributor to our laughing fits while we walked together. I’d be staggering like a drunk fool – a not yet coordinated child with knees giving out then locking back in hyperextension – swaying heavily to the side instead of straight ahead. The experience is really quite humorous because no matter how much I focused, the coordination was just not there, I was either over or undershooting, and all I could do was clutch her hand trusting that she had us both. Though this is a rather unfortunate circumstance and even quite saddening one could say, it’s remarkably beautiful that together we could make light of it and be joyfully entertained; better yet, that I was the spark that ignited the flame.

Reality can be a hard pill to swallow, and for many one that does not go down at all. Having MS is definitely one that continues to come back up, even after I’ve downed it with the impression it’ll stay. Unfortunately, there’s no telling when it will come back again, but I know that I will not choke and that having this monster of a disease cannot make me a monster. This, I know for a fact. My MS has made me grow and has been one huge push to finding humility as well as the confidence to make what I love apart of my life. So this is me, here I am for your entertainment and my own sanity.

It Takes Two

It Takes Two

Every relationship has an ever-changing balance scale that is significantly dependent on the now events, location, and personal commitments. I bring this point up because I want to talk about a feeling that I’ve been struggling with for quite some time. An adjustment that I’ve once (even twice) before had to cope with, work through, and find my own strength.

For months I’ve been searching, wanting, pleading for the attention and proximity from a relationship that was once exemplar of just that. This person was my person. You see that the fame and glamorous life of being a twin is just that, but it also comes with so many underlying hardships. The desire, the need to be the same – identical – isn’t solely a societal expectation, but also a very personal and debilitating pressure. Going through these changes and physical losses have been tremendously heartbreaking for me and I’m sure for my twin as well. Taking such drastic measures to cope and deal with my situation while having my sister there every step of the way makes me realize how truly thankful I was and am. The one person that I can be so easily vulnerable with because they are so similar. They know me and I trust them because they’ve been there since the beginning and we’re practically the same, right? Wrong.

I realize now that I’ve come to a point where I want to be done searching for this once felt closeness because I know that it’s still there, just in a different form. As hard as I try to hold onto something that is no longer there or the way it used to be, I understand that I’m setting myself up for failure. I analyze what I might have done wrong to prevent them from staying. Did I push them away? Did I simply chose not to go? Could I – would I have done things differently? I don’t think I’ll ever find the answers, and I don’t think I am supposed to. We’ve begun to go our separate ways, start our own lives, focus on our individual priorities, and accept the fact that we are far from the same. Yes we call each other to realize our days, though separated by miles, went very much the same. And that is remarkable in itself; how closely you can relate to one person. But reflecting on this observation, I’ve definitely found relatable qualities with others that live closer to me. And that feeling of relief to know you are not alone in your feelings – you are not alone in this life, is equally as satisfying to open up to another who is willing to protect your vulnerabilities.

I mentioned earlier that I’ve found myself twice before – the first was my first contract dancing on a cruise line, the second was when we decided to move to different locations to give our energy to other relationships. Both times were challenging of course, but why did this time seem so much harder? Why was this time filled with much more loneliness than I could have anticipated? All the time spent together is now open…so open, it’s difficult to understand how we filled it. I suppose that’s why people search for their “soulmate;” so they never have to worry about the terrifying aspect of continuous solitude. I do enjoy my solitude but have not, until now, fully understood how much more I enjoy companionship.

Lost In My Mind, In This World Of Mine

Lost In My Mind, In This World Of Mine

Feeling driven and suppressed, motivated and defeated in simultaneous waves. What exactly can I call this place I’m at in life?

With a running list of “to dos” I come home to defeat. “I’m done for the day,” I think to myself as my body grapples with fatigue, moving like sludge through my apartment. “Just a quick sit down and I’ll be ready ‘to do.’” But my mind rummages through its material and surfaces suppressed thoughts and I’m quickly engulfed by my obsessive need for answers to what I’m facing in this world of mine.

Am I too accommodating? Do I care too heavily for the convenience of others and repeatedly resort to placing myself on the back burner? Have I forgotten some passion? What on this earth am I searching for; wanting what I do not have, no longer and never had? Why do these thoughts even come to question? Perhaps it is a lack of certainty. Perhaps it is a lack of esteem. Perhaps it is a lack of security. Perhaps it is some derivative combination.

I feel a constant reminder, just as I’m occupied with fulfillment, of my MS and that I may never be without. Fievel’s friend sings, “Never say never” in the film An American Tale, and I reprimand myself for the mere thought of the word. Does using “may” previous to it make the word any less potent? Is that my excuse to stating what I will or will not do in the future? I wish I knew. But I do think that, though simple, what a valuable lesson to live by.

I believe that the mind’s power of thought can be both nurturing and depleting; a gamble, with hope to avoid the latter. So easily we can tear ourselves down or build upon the wants, the needs, the desires we possess. Today we are surrounded by quick-fix, self-help, be-happy strategies to incorporate in our daily lives. And to answer, of course I’ve succumb to reading these experience-based writings with their quick wit 5-step solutions and their catchy selling titles. It’s fascinating how easily you can access the inner workings of one person’s mind and what it took for them to come out on top of their own suppression. And you learn that though we are all so humanely similar, our biology is all so personal and heavily dependent on whether we’ve ourselves chosen to change.

To change. You fall in love with the idea, thinking of the endless possibilities, the enormous potential for “better.” But to change? You then feel the pressure of defeat; what a dangerous, hefty journey to tackle without complete certainty of the end result. Change would unequivocally disrupt the equilibrium you’ve arranged at present for yourself. There’s no doubt that it would. And here is where I find the beauty in change. Life is forever moving, forever growing, forever changing. No matter how we push to prevent it, the world will not stop and we will go with it – without choice, without attempt. I can say with certainty that we’re never stuck for eternity in one spot, because that spot will sink and we will sink and the world as we knew it will have changed, developed, and reshaped into a more workable state. The same goes for disease, the process, the progression, the reversion. It is forever changing. It can be stable; where activity ceased to engage. But the life around continues to bustle and there is no telling of what direction change may go.

So back to where I sit in my apartment, weak in my rest fretting over my worrisome fatigue. My body will never be the same. But then again, it never was the same as any day prior. I admit I worry without end about what the future looks like until I come to realize the distance I’ve come since the summer of 2015 (even earlier than 2014). And I must say that I have changed – grown for the better, in no way wishing I was back at that point in my life. So why do I keep thinking “my body will never be the same,” when in reality I will always be me, though not the exact same because I am living and with that growing and changing.

It seems as though I’m searching for some past feeling and I cannot for the life of me be patient enough to figure it out and make it happen. I guess that is why many change careers, move to new cities, and follow new and exciting relationships that all provide a rush of life into their souls. I suppose that’s part of the purpose of life; get lost in your world, embrace the change, and go forward into the maze your mind has constructed. An ever-working masterpiece is this world of mine.