Listening To MS

Chapter 3: Understanding Multiple Sclerosis and its Effects on Self-esteem

Before we go on I'd like to explain what Multiple Sclerosis is for those of you not familiar with this disease. There are several theories on what MS is and how it manifests. In my search for answers, I investigated western medicine and its theories, as well as understanding the disease from an eastern philosophy. For now let's focus on the Western medical perspective, as seen through the lens of the traditional scientific community. It is a disease that affects the central nervous system. It is considered to be an autoimmune disease, meaning the body's own immune system attacks itself. In this case it selectively attacks the coating around the neurons in the brain and spinal cord. This coating is called the myelin sheath. It's analogous to the rubber covering that surrounds electrical wiring. There is no cure at this time, although some progress has been made in treatments.

A person's symptoms can be mild their entire life or can progressively worsen. Although there are extreme cases, most individuals fall some where in the middle of the continuum. A symptom such as transient numbness could fall at the mild end of the continuum, while paralysis, although rare could fall at the other extreme. The only thing that is truly known about this disease with certainty is that it is unpredictable. It affects each individual differently at any given point in time.

Optic neuritis was my first MS symptom. Basically, it is inflammation of the optic nerve, which can cause temporary or permanent vision loss. It has affected the vision in my left eye to a certain extent. I have had two episodes that I'm aware of over the years. Each time my field of vision in that eye is diminished substantially--similar to what happens in tunnel vision, while most peripheral vision is obscured. Both times I regained my sight to almost full capacity within a few months' time. I have also experienced loss of motor function in my right arm and hand. I would say I lost 80-90% of function in that arm for about a month or so. Gradually my ability returned. In the meantime I could not continue working, since it became impossible to write prescriptions. One of the pharmacist's routine responsibilities is to take oral prescriptions from physicians over the phone. I had to take time off until my motor function returned. Luckily it did. A few months later I returned to work and my penmanship slowly returned to normal.

There have been other symptoms that have come and gone over the past 15 years. They have mostly been sensory in nature. In a course of 15 years I have had merely a few such symptoms. I remember in particular one winter when I felt as if I were walking on cold, coarse sand at the beach. No matter how much I tried to warm my feet (and they were warm) the cold raw sensation remained. This might have been a great experience had the timing been right. I would have enjoyed feeling cold, wet sand between my toes in the summer. Another symptom I struggle with from time to time is fatigue. This is one of the few symptoms that most patients have in common. This fatigue can strike at any moment and may last as little as an hour or remain for days. It is similar to the flu like fatigue that comes without warning and disappears in similar fashion. It's as if there isn't enough oxygen in the air around me. At these moments, it feels as though God turned up the gravity pull.

Fatigue is frustrating because it is invisible to everyone but you. Usually you look fine to those around you and only those closest to you can tell that something is wrong. But You Look So Well, is the title of a book written many years ago about MS. The title is ironically quite true and appropriate. It can be a lonely disease to live with at times since no one else can see it. Many of the symptoms are invisible to people around you. Numbness, fatigue, memory, and vision problems for example are only experienced by the individual and don't usually directly affect those around them. Unless you say something, others may never know. This can be beneficial at times, but frustrating when you wish others could understand what you're going through.

Imagine your best friend's wedding day arrives and you come down with the flu and can't attend. You feel angry, disappointed, but ultimately so tired and worn out that all you can think about is lying in bed and sleeping for days. We can all relate to moments like these. With MS this kind of experience happens more often, except there is no reason, no flu, no vomiting, nothing tangible, just a profound fatigue. This brings on feelings of guilt in the person experiencing the fatigue and in some cases frustration from friends, family and co-workers, who can't relate.

I have always prided myself on being dependable. Fortunately, knowing this fatigue can strike at any time, I've been able to adjust my work schedule to part time. By cutting back my hours, I have time to rest in between work days and also have more energy for responsibilities at home. It's a balancing act. It was important for me to know that by working fewer hours and shorter days, I could continue being dependable to my family and my coworkers.

Guilt however still makes an appearance at times. As a result I push myself to make it to events, social and professional. At these moments, I feel as if my body is present, but there is a part of me that is completely dissociated from the experience. It's as if I am in a dream, floating above myself and observing everything and everyone from a distance. I must appear to others as dazed, aloof and detached. The two merge once again when I return home to the comfort of my bed and am finally able to rest. Most of the time I get a good night's sleep and wake up refreshed. However, when I keep pushing myself routinely, when I'm not listening to the cues my body is giving me, the fatigue worsens and lasts for longer periods of time. I have to admit; to this day I still cringe when setting up a scheduled date or engagement of any sort, particularly in the evenings. Although I have incorporated many healthy routines and elements into my life, fatigue at times can still be a factor. Once again the lesson is to enjoy the present moment. When I'm feeling energetic, I try to take advantage of it. I certainly enjoy spontaneity and appreciate it much more now than ever before.

Rearranging my life became imperative. My expectations had to change. More accurately, I began to realize that these expectations were only a reflection of what I thought was expected of me. I became aware that I was allowing outside forces to shape my life. But to understand this I had to first acknowledge that I had an underlying need for approval. Can you imagine? I needed to receive approval for being me. I began understanding that wanting to please, and needing to please come from completely different states of mind. Wanting comes from a strong sense of Self. This empowered self, our true nature knows who we really are. Needing to please comes from a state of emptiness. In this state, our identity is created by what we do, and how we see ourselves, through someone else's perception of us. It is a self, created by objects, people, and situations outside of us. It's that little girl or boy inside of us who is constantly looking for approval.

For many years I existed for what I was to other people, not for who I am. I can now be of service to others, through my own choice and sincere desires. It might sound like this type of attitude would only create more self-centered people. In reality I am a kinder and more considerate person now than ever before. Because when I give, I give from the heart and not just from a subjective sense of obligation. I have learned that by nurturing myself, I have more compassion for others without resentment.

MS forced me to see that I couldn't physically give more of myself than my disease would allow. I had to learn to schedule time to relax and pace myself. I also had to learn to feel comfortable asking for and accepting help. This was and continues to be challenging to this day. Listening to my body became essential for living in a healthy manner. For the first time I saw and appreciated the sacredness of this vehicle we call our body. In order to do this I began asking; What felt good for me? What was comfortable? What was more important? What was it that I truly wanted to focus my attention on? The questions didn't stop. I also had to ask myself who in my life was healthy for me and who wasn't? I tried to surround myself with positive loving people and avoided negativity as much as possible.

In the process of figuring these things out, I began organizing my life. The junk drawers that we all have had to be cleaned out, both metaphorically and literally. I had to become more efficient in my practical life. Only the essentials remained, only what was ultimately fulfilling for me. Simplifying your life doesn't necessarily mean leaving everything and moving to the woods, it means looking at what you've been, be still, and understanding who you are. You may think this is a selfish attitude to have, as did I for a long time. It is not.

My life, my truth, this is who I am. These are my best qualities, coming from a clear place of power, wisdom and love. When you come from a healthy self-nurturing place, the qualities you have to offer embody power, wisdom, love and compassion. Other people sense it. Your very essence exudes compassion. I began noticing that more and more people were drawn to me and enjoyed being in my presence. The feeling was mutual, I was now in a place that I could sense and appreciate the divinity in others. It was easier to see beneath the exterior ego shell that we all carry around.

Most of us define ourselves by circumstances and relationships in our lives. We exist because of how others need us and how we need them. Unless we stop existing as a quality in someone else's life, we merely exist for what we have to offer to another, in our own life. There are many people in these codependent relationships. Often the relationship dissolves when the needs of the individuals change. Our qualities can easily be replaced by another individual, but no one can replace our unique self.

I recommend asking your self; What am I? Make a list of needs that you think you meet in others and another list of how others meet your needs. Then ask yourself; Who am I? How long is your list? For example, do you like red because it's your significant other's favorite color? Or does it truly please you? Pay very close attention to your answer. Does it please you because it pleases him/her? If this is true then it is not an answer to your who are you question, but rather it answers what you offer to another question instead. Don't misunderstand, I'm not saying it's unhealthy to fulfill your needs or someone else's, but if all or most of your answers to these questions, refer to your relationships with others, then it's worth taking a closer look.

Does this confuse you? It confused me for a while and it is still something that I occasionally catch myself doing. Remember, be kind to yourself. This is a process. The most we can expect of ourselves is that we try to improve as time goes on. Eventually we realize that there is a huge difference between existing through our service for others and being of service to others. By being of service we are content regardless of our actions. We already are valuable, authentic and worthy of love. Now by finding that center, we begin to feel the presence of our essence. We're not creating it. We are merely regaining our awareness of our inner authentic spiritual Self.. The veil parts and we begin to see the divinity within us and how truly unique we all are. Once you are able to know this in your heart, then you will be sharing with others your authentic, loving self.

I have presented you with a few comparisons so far in the way we think about ourselves and others. It may seem at first to be a mere play on words, but it's not. I believe that we agonize sometimes over things that have been misinterpreted by our brains. We only use a small fraction of the brain's enormous capacity. When we express ourselves mainly verbally or linguistically, there is a limitation that we must consider.

Good communication and understanding can be compromised because of verbal limitations. This communication includes the dialogue we have with ourselves. I don't mean that the more educated you are the easier it becomes. Basically, I mean that language itself is limited. An optimistic person for example has a positive inner dialogue with himself. We can only express so much through the written or spoken word and that includes speaking to ourselves. For example, have you ever had moments when you feel frustrated or angry and aren't sure why exactly? You can't quite put your finger on it. But one day you are speaking with a friend and he articulates what you're describing in his own words. He truly captures what you're experiencing. Suddenly you feel like the weight of the world has been lifted off your shoulders, "Oh my God, that's it, that's exactly it!" You respond with elated relief. Although you had a sense that something was bothering you, you were entangled in an emotional web, too close to the trees to see the forest. Having it articulated clearly helps you to identify it, understand it, and plan to resolve it. This is partly the role a good therapist plays in helping someone to heal. In my own healing I have had moments like these -- aha moments. Another veil parts and my world seems even brighter and lighter than before.

Take for example the often used term, self-centered. According to Webster's dictionary it means the following: independent of outside force or influence; concerned solely with one's own desires, needs or interests. In my opinion this state of being is not desirable or joyful. In fact it sounds extremely isolating. The definition implies that outside forces are never an influence. I would imagine this would have to include loving, nurturing relationships. Secondly, the individual is concerned solely with themselves.

Let's look at the words a little differently. By doing this maybe we will be able to lift that guilt we carry about understanding and nurturing ourselves. What if we switch the words like this, centered-self? I don't think it formally exists in any dictionary, but maybe it should. This is how I would define it: a divine human being who is centered within the universe and authentically comes from a place of power, wisdom and love. In order to be a centered-self, we must be aware of our divinity. And by doing so, knowing who we truly are--a part of the universe and not apart from it. With enough self awareness and willingness to continue to grow, by integrating intellect, intuition, and love, so that we may in turn give authentically to others. Does this sound selfish? Or does it sound like someone you would like to meet? You see, same words, different meanings. One is healthy and inclusive. The other is isolating and exclusive. Words are powerful tools used to communicate with other individuals but most importantly ourselves. I've learned that it begins with me, my mind, my soul, my body.