The Struggle Has Ceased

It's been six months since I have written. Here, that is. While I have taken quite the sabbatical from this blog I am blogging for MS sites as well as acting as the associate editor for the Golden Retriever Rescue Newsletter. The thing is it all started here so I am not about to walk away from this as it's like my first born and the etiology of all that currently gives me purpose and meaning.

This year has been difficult at best with my health taking precedence; Multiple Sclerosis is not for the faint of mind, body or spirit and has proven a worthy adversary. There have been peaks and troughs and like anything in my life I navigate with faith, positivity and hope then face whatever this way comes. Is it easy? No. But it is what it is and my reaction heavily dictates how I am impacted.

People often tell me what an amazing warrior I am, and while I am both flattered and appreciative it is actually quite the antithesis. I stopped "warrioring" a long time ago when I realized that my fighting and standing in direct confliction with what was happening only parlayed the inevitable and exhausted my sacred resources.

Much more about this in my blog over at Endless Pursuit as next week I will elaborate my new found epiphany. Until then, I am grateful to be back in the swing of life and among those who were there before it all began.

Invincible Summer Within

“In the midst of winter, I found within me an invincible summer”

-Albert Camus

Despite the calendar month and the mercury rising, my recent past has felt much like a nuclear winter. After an incredible impact, I lie quiet and still among the fallout that surrounds me. I see but I do not digest, life moves on but I have stepped off the merry go round, a bystander to my own life.

But I want to ride.

As frightening as these last few months have been I gain nothing by watching the world go by. As Marianne Williamson once spoke,” Your playing small doesn’t serve the world. There is nothing enlightening about shrinking so that others around you will feel better, you are a child of God and you were meant to manifest His glory.”

So I am starting.

If I want a change I have to be that change. The law of averages is not in my favor should I choose to stay motionless so onward I move one tiny, almost unperceivable, step at a time. But it’s movement and it’s mine.

Hence the summer within.

 I am beginning to see the blooms beyond the thorns and the grass amidst the weeds, asking God to keep me grateful for all of my blessings. It can be extremely trying to stay cognizant of thanks when enduring physical pain and I have found strength and solace in both family and faith. Making every effort to not only look but see, I revel in every minuscule miracle before me, taking great comfort knowing that I will always be a child of God. He walks beside me through every trial and tribulation and akin to electricity flowing He courses through my veins propelling me to keep moving forward.

 So I am in motion.

 The great quandary I now face is how to keep my forward momentum when my faith wanes and my feet grow weary. Pain is an ominous adversary, capable of making even the most God fearing fall to their knees. I am no different. But thus far I have a 100 percent track record for getting back up and I keep that in mind on the days that try me.

 As I struggle to find the lesson in all of this I am realizing that perhaps the lesson has already come and in inching forward I am learning to trust, learning to believe and learning to accept.

 And so I am.

Give Back

I am often asked what keeps me motivated, especially on the inevitable ‘bad’ or trying days following Tysbari or a random spell. Aside from the obvious, my Lord and Savior, family and friends, it’s my involvement in this war we’ve waged against MS.

Fighting a war is a daunting task, especially when up against such a worthy and ominous adversary such as MS, but it is important to remember that you are not alone in this fight. I come across many who feel ineffectual when it comes to this battle as MS can be both overwhelming and intimidating, rendering us physically and emotionally fatigued. Take heart! This is a collective effort, one we are to support one another in accomplishing as no battle was ever won solo.

Admittedly, I was a bit uncertain where to start but eventually just chose a platform best suited for my abilities. It’s no secret that I love to write and, after having had a book published as well as a myriad of articles relating to health I decided to combat this disease via informing and uplifting the masses. Being a stay-at-home-wife affords me the opportunity to write when my health allows, as well, there’s something immensely satisfying about completing a piece in your pajamas! I wrote both for Endless Pursuit as well as The Multiple Sclerosis Society and find reaching people quite satisfying. The feedback I’ve received lets me know the little I am doing is making a large impact.

In addition, I enjoy fundraising. Last year I completed Walk MS with over 1500.00 in donations and I am slated to surpass that number this year. There’s a possibility I may not be able to participate in the walk itself but instead seeing that as a negative, I am choosing to do what I can. It is reassuring to know that money I’ve raised will help someone with medication or physician costs. Fundraising happens at all levels and is something you can easy achieve via the myriad of social media outlets, the majority of the money I raised was done so through Facebook.
Another avenue I have chosen to pursue is actually helping other people with MS on a more personal level. I have volunteered to give individuals rides to appointments and/or do some general errands. I know what it’s like to feel helpless and without means to accomplish any given task and gives me great pleasure to help in this way. There’s no greater form of ‘payment’ then a genuine hug or to hear someone’s very heartfelt, ‘thank you’

Laughter IS Good Medicine

"Through humor, you can soften some of the worst blows that life delivers and once you find laughter, no matter how painful your situation might be you can survive it”  - Bill Cosby

Such a truism and one I have been made acutely aware of lately. While a myriad of lifes struggles have been particularly painful, I have found solace in my humor. Quite honestly, if someone asked me to look at the humor in any aspect in my life I most likely would have shot them that, ‘Really?” look before saying something I would surely regret. Ironically, my humor came out of hibernation amidst some huge stressors.

Despite my monthly infusions of Tysabri, I have slipped from Relapsing-Remitting to Primary-Progressive. I can feel the progression in my legs, my mind and most of all, my heart. I have been hit with a melancholy and wistfulness that make me quite blue and it takes every ounce of cognitive strength to will myself out of it. Getting out of a funk is an exercise in deliberation and determination and can leave you feeling weary. I was in such a state when Abby did something. I say something because what she did, in and of itself, was not funny. In fact it was quite annoying, hence, leaving me with a quandary. Do I take see this situation as a negative or a positive? Something within me just chose the latter and I began, much to my surprise, to laugh. Loud.

Humor is a weapon in our arsenal and we often forget its effectiveness in both making us happy and relieving stress. I have found it imperative to laugh amongst the tears and smile in my despair as it doesn’t have to be one or the other. Because I am sad doesn’t mean I have to forego feeling happiness. They are not coexistent yet mutually exclusive. I can hold both.

So can you.

This thing we call MS and the myriad of symptoms that mirror it can lead us down a dark road and we need to cull upon any source of happiness within. Interestingly enough, doing this is often a choice, one that can drastically alter our perception and, as they say, perception is everything. I am definitely not saying that our blues, struggles and troubles will up and disappear; rather, we will find hope in a wonderful coping mechanism.

Just to clarify the situation with Abby was as follows: Earlier in the day, Abby has counter surfed and absconded three pork chops. Upon arriving home I found only traces of the pink Styrofoam container strewn across the lawn and instead of getting mad I laughed. Not only did I smile thinking of her trying to contort her rather large Golden Retriever tummy over the granite counter, I laughed out loud at my stupidity at trusting her with them. Later that day she was carrying around something that resembled a dead bird. I was convinced of this all while trying to have her let go so I could dispose of it. Once she let go I approached only to find that this dead bird was really a dirt-dipped pork chop. She had buried the aforementioned pork chops.

I laughed deep and hard and you know what? It felt good.

Bring it 2014

As another year comes to a close I think back to the twelve months of 2013 and, as I often do at this time of year, become both melancholy and motivated. What is it about the culmination of a year that invokes such powerful emotion? I find this time of the year to be quite juxtaposition as I both long for times gone by and yearn for those not yet experienced.

I suppose there is somewhat of a mourning process for me when each year concludes. While I await, with cautious optimism, the months ahead, I know all too well that time marches on and like it or not I need to embrace the newness and let go of the old. The thing about time is that you can’t retrieve it. Once it’s gone it’s gone forever and you had better hope that you used yours wisely.

The two questions I ask myself on this, the precipice of a new year, are:

Did I use my time to the best of my abilities?

When I leave this earth will my time spent have made an impact?

As much as I hope to utilize my time I know many hours of my life are spent on the couch dreaming. Let me preface this by saying I am not resting my laurels by choice but by virtue of this thing we call MS. So I ask myself, as I am certain you do, how do I make the very most of our time give limited mobility? Loaded question. Short answer? I write my little heart out both is an effort to purge myself and reach others. While my writing may be perceived to simply help others I must confess it’s quite the antithesis. When emotions run high and tears fall from my eyes I turn to writing as its cathartic. Even as I write this my eyes fill with water as I have such a desire to do so many things yet feel like I am on the sidelines of life much of the time.  Having said this I am not into pity parties or crying myself to sleep, rather, I prefer to do what I can with what I have. These tears only propel me further and serve as fuel for my desire to live my time with purpose.

We all wonder how we will be remembered once our short time here on earth concludes. I am not afraid to die. I can think of nothing more beautiful that living in eternity with our heavenly father among those we’ve loved and lost. No pain. No sadness. No MS. No, I am not fearful of death, as it is only death of my shell, my soul will thrive and live on. The imprint I leave behind is up to me and I hope to live with such intent, such passion and such reverence for life itself that those I leave behind will be better for having known me. Yes, I am limited in what my physical body can do but I refuse to let that stop me from thriving. Each day I seem to face a new hurdle be it physical or emotional and although I may stumble and fall I will get up each time. I want others not to remember the number of times I fell, rather, the number of times I got back up. I will live this life to the fullest and I will leave this world a better place.

Bring it 2014.

Crisis of Faith

For so long I have lived in fear of acquiring some sort of  “super” bug as a result of being on such intense immunosuppressant therapy such as Tysabri. Well, fear no more. Following my last infusion in early November I began to feel increasingly worse and what had began as a flu had migrated into full blown bronchial pneumonia. Despite antibiotics, steroids, albuterol and a nebulizer I steadily declined. Until today. It’s been exactly 20 days of living with every symptom under the sun and even though the majority of them are still present, I feel a modicum of strength I have not yet experienced.

As you can imagine, and well know, living with MS and the more aggressive forms of treatment, we often live in a world filled of fear, uncertainty and worry. Although well founded and completely justified, I am finding it both counterproductive and short of faith.

Do you believe in self fulfilling prophecies? I do. I am a firm believer that what you put out comes back to you tenfold and always prided myself on my optimism, however, I was a fraud. While I was thinking all of the right things I was most certainly not digesting and metabolizing it. While I can easily spout off every positive cliché’ and be of immense service to others, I found I, myself, was living encapsulated in fear.

Well, I had an epiphany.

I found there was a direct correlation between my fear and lack of faith. This is not to say this was deliberate, yet purposeful or not its impact was the same. With every fear, with each doubt and in every tear I cried I was moving that much further away from my faith. I immediately began to pray every time I felt any one of the myriad of emotions we so often feel living with this beguiling disease. Within a few minutes I not only felt relieved I felt a resurgence of faith. Where there had been a chasm in my spirit it was now filled with hope, praise and contentedness. Where there had been a crisis of faith there was renewal and I knew that, despite all I contend with, I would be okay.

I am still living with pneumonia and the fallout from MS but gone are the fears and doubts about where I will be tomorrow or five years from now. Wherever this disease takes me I will be on the right side of His glory and on the right side of my faith.

Sounds of the Soul

People often ask me how I maintain such a positive attitude. While I go could into a litany of spiritual and cognitive practices I can easily answer that question with one word today; music.

As I type I am listening to Christina Perri's, "Arms", as it reminds me of someone special. Depending on my mood I will match it to any of the over 100 play lists on my ipod and lapse into sort of musical coma. I venture to a time and place reserved only for me and relish memories, thoughts and emotions not so easily accessed without the sounds and harmonies. Once enveloped, I can be lost for hours, only to come to by the shrill of a phone call or alarm.

I believe my love of all things music began at a early age as my parents either had me involved with an instrument or played music throughout the house. My Mom was quite proficient at both the guitar and piano and we'd often sit and sing folk songs while she played. I began piano lessons at 5 and played in recitals throughout my adolescence. Yes, there were days when I didn't want to practice but all in all I am very grateful I stayed with it.

If I were on a deserted island I think I'd be okay without the everyday provisions but without music I'd be certifiable. Music is the story of my soul, the very reason I smile, cry, laugh and listen. I get lost in lyrics and melodies as they take me to a place and time only I can savor. And savor I do. I find myself listening to music hours on end without so much as a desire for television.

Unlike so many other things out there today, music is a 'healthy' addiction of sorts. I wish more kids would take up an instrument or listen attentively to the music of yesteryear as there was so much more to a song then techno-lyrically-challenged sounds that are all too prevalent today.

Do I sound old? Good. When it comes to music appreciation I'll be old-school any day.