Wednesday, February 25, 2015

Starting From Here

 The years have gone by since I have last written here, and in those years I have covered both gentle and treacherous terrain.  I find it difficult to find a point at which to start, and therefore can only begin with the day that changed my life forever.
Almost three years ago, I was admitted to the hospital with partial paralysis in my legs, in excruciating pain, and unable to walk on my own.  My husband helped to navigate my weak and terrified body and mind into the emergency room at our local hospital.  As I lay propped up in bed, in an over-sized hospital gown awkwardly pulled around me in an attempt to feel dressed, I continued to tell myself that things weren't so bad.  It was nothing a high dose of IV steroids couldn't fix.
Three days later, after daily IV steroids, morphine, numerous MRIs, and countless looks of pity, I was released in a rented wheelchair and a physical therapy referral in my quivering hands. I only had to wait a few days for the steroids to combat the inflammation, and then I will be back to walking normally, I continued to tell myself.
Nearly three years later, I am still struggling to walk.  I was left with nerve damage in my spinal cord, and I waiver between some sort of acceptance, and impatiently awaiting the dreamed about breakthrough in nerve damage repair.  Each day begins with a fatigued but determined decision to go to physical and mental combat with the damage in my spine.  But more each day I realize that the true battle continues to lay much deeper than that.
There is, and may always be, a fierce struggle to accept this change in course that my life has taken, so seemingly against my will.  Some days I would give almost anything to be free of this pain, and the fight to walk just a little bit farther than yesterday.  On other and more frequent days, I truly feel blessed at how this has forced me to live my life in a much deeper and intentional way.
However, most importantly, I have been determined to find a way to bring some sort of  sense to this all.  I wish, more than anything else, to help others along the difficult and rocky path that I too have been thrown on to.  In regards to how I will accomplish such a task, I am still searching for the answer.  But I do believe that these trials will open doors for me that I would have never found otherwise.  I am a stronger and deeper person because of all that has happened to me these past few years, and I am grateful, and also in some ways indebted, because of it.  

Thursday, November 17, 2011

"But You Look So Good"

One of the greatest obstacles I have encountered during the six years I have lived with a chronic illness is attempting to explain to other people what I am experiencing in relation to this illness. When asked how I am doing or how I am feeling, I tend to waver between being completely honest about the myriad of symptoms I am struggling with, or being dismissive with a generic answer that I am doing fine. I believe that most people also deal with this decision in some way or another on a daily basis. As a formality we are often asked, 'how are you?', which we tend to answer with some type of generic response, 'fine' or 'good'. But what about the times we are truly struggling inside in some way or another? How honest are we to be with people without making them uncomfortable?

When I do choose to be completely honest, and describe the burning and throbbing pain in my legs, the stabbing pain in my feet, or the crippling fatigue that keeps me in bed more often than I care to admit, I find others quite often respond in disbelief. "But you look so good' they say to me, which leaves me feeling conflicted on how to respond, not only verbally, but emotionally as well. Sometimes I feel guilty for voicing my discomfort, because I know there are so many others who have it much harder than I do. But I also want to help bring awareness to others that there are so many 'invisible disabilities' that countless people struggle with, but which most people in their lives cannot see or understand.

I suppose that one gift I have received as a result of my illness is that I am more inclined to wonder at what lies beneath the surface of what I see in other people. It seems like we live in a society where so much is judged by what we see. Perhaps human beings are naturally inclined to rely on the visual sense more than their other senses, but I find that so much can be lost as a consequence. I try my best each day to look beyond the surface of at least one other person, and truly wonder what this person might be experiencing beyond what I can judge from what I see. I think that perhaps all of us have things that we struggle with that are not visible to others at first glance. But what if we take the time to see in a different way when we look at others? Instead of looking at their outward appearance, might it be helpful to attempt to gaze inside their internal experience?

Sunday, April 17, 2011

Finding My Balance

It has been quite some time since I have posted on here, and I can only say that I have been on that side of the spectrum when the daily challenges of life start to weigh heavily upon me. It is all to easy to fall into the self-pity that I try so hard to avoid, and sometimes, without being fully conscious of it, I find myself once again back in that place that I try so hard to stay away from.

And so, I have been attempting to find a balance with this daily living. There must be a place where I can be suspended between being truly aware and awake to the reality of what is happening to my body, but at the same time have the same awareness for the gratitude that I owe to this experience. Sometimes I ask, how could I possibly be grateful for the fact that my body continues to attack and destroy itself? It can seem like a cruel and unfair hand that I was dealt. But I have to move past that and realize that my life has changed in profound ways since this journey began.

As I continue to challenge myself to get up and walk without the assistance of a cane, I have been very aware of the way my body struggles to balance itself. I find myself embarrassed to be seen like this sometimes. I know I can appear like a very drunk person trying to stay upright, as I sway and stumble, and I wonder sometimes what people are thinking. I try so hard to walk slowly and correctly so that I will not be stared at or judged. And I have begun to realize that this struggle to find my balance physically, has in so many ways paralleled my struggle to balance my perspective on the whole experience of these daily bodily struggles.

I have found that the more accepting I am of the way I am, the way my body effects me in every situation, the more balanced I become in my attitude about it. I find that when I am so focused on my balance when walking, and how others are seeing me, the more focused I become on the unfairness of my situation. As I worry about what others think, I become harder on myself and my life. However, when I can let go of, and not worry about, how I appear to others, I find that I appear so much better to myself as well, and I tend to not focus on the downfalls of my situation.

Finding my balance may never quite happen in a physical sense, but I know that it is truly possible in an mental,emotional and spiritual sense. And it is so clear to me that the latter is so much more important. My body I have no control over in many respects, but the way I chose to see myself and my life is entirely up to me. So, I have decided to focus not so much on the challenge of walking with balance physically, but walking through life balanced in the metaphoric sense: walking with purpose and confidence and gratitude for what I do have.

I must honestly say that I have not found this balance yet, but I will continue to pursue it to the best of my ability. And, I know, I will be much stronger for even having tried, no matter where I end up.

Sunday, August 22, 2010

While Losing My Vision, I Gained My Sight

Nearly five years ago, during my first attack of MS, my eyesight began to get very blurry. There were times when all I could see were the outline of objects in near darkness. Sometimes this would occur during an attempt to drive, and in sheer terror I would pull over to the side of the road. Of course, one can imagine the feelings of helplessness that this caused me. Yes, it was scary not to see where I was at times, or to see what was around me; but above all, the most terrifying part of this was the inability to read and engage in nonverbal communication with others.

If I could not see who was approaching, I did not know how to react to this person. Do I smile, being considerate and friendly to a fellow human being, who I did not know? Is it an aquaintance that I say hello to? Or is it a friend that I should acknowledge with excitement and engage in conversation with? I was so afraid of being misinterpreted, that I often avoided being out in public, especially social gatherings. I knew that my confused behavior, like not acknowledging people I knew, was being misinterpretated, because others could not "see" that I could not see.

The only way I knew how to cope with this was to retreat farther into myself. I became isolated and lonely, and longed for the vision I had once had. During this retreat inward, I began to understand how crucial it is for a person to be understood and accepted by others. But how could I accomplish this with an invisible disability that few knew about or understood the implications of? I learned how much of our connection to other people relies on nonverbal subtleties. Reading, and being read by, others is crucial to social interaction, and I could do neither.

I was forced into being with myself completely, without the visual distractions of this world, both the beautiful and the ugly. Through this often painful journey, I discovered parts of myself that could have been left buried forever. I came to accept the parts of myself that I liked and disliked. I came to value myself as I am, without needing others to validate me in the many ways I had relied on previously. All in all, I gained a sight into myself that has become of most importance to me.

I have since gained much of my vision back, but the sight that I gained into myself has remained. I can now navigate through this world in deeper ways than I had ever thought possible. Because I know myself better, I can know others better. Because I can see the invisible and unspoken parts of myself, I can now see those parts of others. And finally, because I can now accept myself in more complete ways, I can give that same acceptance to the people in my life.

Saturday, July 24, 2010

Hoping to share my life in new ways...

Welcome to my blog! I decided to start this blog in order to share with others the challenges and lessons that I have discovered in living a daily life with Multiple Sclerosis. I have the hopes of helping my friends and family better understand me,in a deeper and more meaningful way.and connecting with, and possibly helping, others that struggle with MS. MS can be a very isolating condition. Plagued with severe fatigue and pain, as well as numerous other disabling factors, makes it hard to get out and maintain relationships in the way that I would like to. Therefore, this is hopefully going to be a way that I can continue to share my life with those that I care about. I do not wish to bore others with an exhaustive explanation of all my symptoms, nor do I wish to vent about the unfairness of having this condition. I only wish to challenge myself to grow from adversity, and share it with all of you. I hope that this will be an inspiring blog; that it will inspire not only you, but me as well. I will do my best to refrain from self-pity and venting, and do all that I can to bring light and hope to those that read this. Thank you so much for visiting, and I wish you all a wonderful day.