A Day in the Diet - Archives
Past articles from our Day in the Diet feature, by Rosamaria Sagastume, containing thoughts, tips and experiences in living with MS and the Swank Diet.
Entries are sorted by publish date, with newer entries toward the top of the page.
A Day in the Diet
Where have you gone, my love? (October 2009)
On July 4th, I lost my best friend on Earth. I was pulled over as I drove alone with Dunkin’ in the back seat, tired from a camping trip and a triumphant hike in Sedona, Arizona. The vehicle I drove was a car rental which I contracted in Phoenix the day prior. Dunkin’, in his elegant and zen puppy way, managed to make us friends who invited us to dinner and camping on the 3rd of July. We swam in the stream, build altars to nature, hiked a majestic Sedona trail on the red rocks, and met warm and attractive people who added to our experience. The drive back to phoenix was the last we would share together.
The cop pulled me over as I drove back to Phoenix, smiling at my best peacefully exhausted in the back seat. He had tailed me for almost one mile on the right lane and did not tell me why. I sat patiently waiting on the side of the road on the I-17 in the July heat. I was ordered to show my hands at all times, which did not make sense to me. The harsh tone the cop used was enough for me to know that something was not right. I was ordered to leave the vehicle. With my hands in the air, I walked backwards, as I was instructed. I turned my neck to see why he was so angry. As I turned, I saw him holding a shotgun pointed at me from the cop car parked immediately behind the car rental.
The cop cocked the shotgun and I heard it loud and clear. He aimed at my head through the scope. I saw my head being blown off, and no one ever knowing what became of me or Dunkin’. I breathed deeply, controlling my emotions as best as I could since I knew that my MS would activate if triggered. I felt I would be killed.
I was ordered to kneel. I wore athletic shorts and a tube top and weigh 110 pounds, and am 5 feet tall. I posed no threat. I was immediately cuffed extremely hard. My wrists were suffocated in the metal. The cop put me in the backseat and I asked: "What is happening?" No rights were read, nothing was said until he threw the door shut. This vehicle is reported stolen, he shouted. I immediately explained my rental agreement is located on the passenger seat. I let him know I have Multiple Sclerosis and my Licensed Service animal is sleeping in the back seat. My words were ignored, he threw the front door shut. I was encased in silence.
The heat inside was oppressive and I gasped for air like a fish out of water, like a woman with MS in a glass enclosed heating conductor. Another cop arrived. They approached the car rental with guns drawn. The bald cop opened the passenger door and retrieved Dunkin’s fluorescent orange vest which clearly indicates he is a service animal. He also had the rental agreement in his hand. The other cop opened the door where Dunkin’ was lying. The car lead to oncoming traffic.
Dunkin’ elegantly stepped out of the car onto the highway. Cars swerved as they barely saw him crossing the median in a confused trot. Where’s momma? Where is she? She is screaming in the back of a heated car and watching it all unravel. She is crying and no one is listening. Her hands are numb, her legs are too, her skin is as senseless as the scene before her. She is calling you Dunkin’ but you cannot hear her. Dunkin’ please come back…please stop walking away from them even though they are chasing you and scaring you. Please find me, Dunkin’, please live.
Dunkin’ ran southbound disappearing for safety in the desert. My prayers and breathing, as controlled as I tried to be, escaped my breath. The heat was squeezing my lungs and now my head was an inferno. My skin was so hot it felt as if it were melting. My bound wrists continued pulsating in pain. Nobody listened. The cop came into the car again to punch in something in the computer located in the front. I again pleaded that Dunkin’ will only come to me and that I have MS and this is mistaken identity. "SHUT UP and quit talkin'! You’re annoying me and I’m going to GAG you if you continue, SHUT. UP!"
I knew he would do it, his demeanor showed me he was capable of blowing my brains out. The other cop had opened the door to let Dunkin’ out right into the oncoming traffic. WHO DOES THIS? My brain wanted to leap out of my head to make sense of what was happening and I grew hotter and desperate for air. I had to be still since any movement reminded me that I was drenched in my sweat. Then, I saw him once again. Just once. My love.
Dunkin’ I am here! I am inside here. Please do not move. Please sit, please do not fear them. My zen puppy, who always knew where to lick me when I was numb, saw them charging at him. HE paused, looking…momma. Where are you? I am looking for you, were did you go? I watched as he paused, looked for me, then realized that they cops were after him. He instinctively ran when he saw no sign of me. I told them, enclosed in the glass box, that Dunkin’ will only come to me. They walked by me, hearing nothing, not even looking at me to see if I was still conscious. That was the last time I saw my love, my healer, my little Dunkin’ dog.
They chased him to his death. There was nothing of his collar except a torn piece of it. None of his tags were able to be recovered. His lifeless crushed body was driven to me in the back of a cop car. Like john Lennon, Dunkin’s lifeless body lay in the back of a cop car, killed by freaks with no sense. Three hours later, I was released. I was left on the side of the road while they, five cops at this point, converged and met in clandestine conversations far from my ears. Some cop drove the rental back to the rental place on Phoenix. I was escorted to the hospital north of Phoenix.
Since then, my MS has worsened. My life prior to July 4th has ended. I am very fortunate to have love from my family and friends. They have been the only reason I have been able to get this far. Prior to my time in Arizona, I ended a two year abusive relationship with Wind Horse. Some people will twist your mind and your open eager heart, and will abuse you to the point of destroying who you are. Something inside of me did not let it go any further and I ended the abuse. My love was supportive and nurturing, it was all I gave anyone I have loved, Dunkin’ was living proof of it. He lived a life of a human, I loved him with no boundaries. He learned as humans learn. He knew how to eat at the table, how to behave in a crowd, how to follow unleashed if necessary, how to locate my numb areas on my skin. Dunkin’ was my best friend who made the past two years bearable. He was the joy of my life, my daily light.
I am grieving the loss a spirit that brought only joy and hope into my life. I do not understand how this is possible as inside, I am no longer the same woman. My core has been shaken. The dust is still settling and the one thing on my mind is justice. I have spoken to several attorneys and I am seeking the one who will have the heart to see this through until the end. Anyone can legally figure out who is liable for this crisis. The person who has the heart will be the one to change things. I do not have official representation as of yet, and am seeking a civil lawyer. There is national interest in Dunkin’ and my story by NBC already. Dunkin’s life was a light to all who met him. He was extinguished on this Earth by cruel people who could have made proper decisions. No one will ever have this happen to them. I will make sure of it.
I can be emailed at justicefordunkin@gmail.com with suggestions for civil lawyers in Arizona. I appreciate all of the loving thoughts that I have received. Dunkin’ is somewhere now, I do not know where, and I know he is still himself, the peaceful, loving zen puppy with the large paws, the scar on his belly, and the most beautiful heart. Dunkin’, your love made me awaken to the abused life I was living. Dunkin’, you are my angel. Always. I love you, my little daddy. Thank you for the seven plus years that you graced my life with. You will always be my #1.
Please visit, comment, and send this link to everyone you know. People with disabilities, people with service animals, people with pets, pet lovers, people with a pulse and who care to defend their civil liberties in this country where police excessive force is allowed by our government. The only thing that will create change is your passion to voice your opinions and be left in the back of a hot cop car, shackled, with no voice. That day happened to me. By not telling your government officials, you are choosing to put those cuffs on yourself and allow them to do this to you or your sister, your daughter, your family. Visit www.justicefordunkin.blogspot.com now and see the photographs of the visible bruising they left me. The invisible bruises are the scars in my brain and my heart as a result of this tragedy.
Trust, and it will happen. (April 2009)
I have so much to do this week that there seem to not be enough hours for work to get done and sleep. This is one of those times where grad school applications are needed (yes, for individualized study here at NYU), work needs to get done, group projects need to get done, reading for class and a quiz needs to be learned (and coming from a straight A student, this is paramount) and all while my relationship has been shaken to the core. I start this week not knowing exactly how it will all come together. I just know that it all will come together and I will achieve my A, my acceptance into a tailored graduate program, my ideas will flourish for my group, and I will end up in a solid foundation again in my relationship. After learning each day in school and in life itself, I am confident in saying that it will all happen because of trust. Without trust, there cannot be natural growth or development. This goes for my current life and for you, the person with Multiple Sclerosis who chose to give the Swank diet a “go.”
Trust is the foundation for relationships with the exterior world and with your own world, the world inside of your human body. When trust is challenged, the world of the person who feels betrayed or hurt turns completely upside down. It is quite similar to an exacerbation which throws our bodies into such frenzy that we sometimes cannot swallow. That sensation of choking occurs when our nerve impulses are weakened by the MS, and in my case dysphasia is not uncommon. The difference is, I know that the MS is not the cause of the lump I feel in my throat throughout the day. I’ll tell you one thing; I do not like this sensation. How can I get rid of it? Half of the time, I tell people that I do not know how I get through things and I end up not only getting through them, but I also conquer them and learn a valuable lesson which carries me for the remainder of this life. And here I am again, not knowing the answer but knowing that the answer exists within me. It cannot be any closer to me than that. At times we need to find ways to get to the answer. Reading, learning, having quiet time to reflect, to remember who we are, all of this builds trust within ourselves. I may not know my next step though I trust that it is a step in the right direction because my energy is already aligned with a positive outcome.
When I was diagnosed, I was in such a shock that I could not distinguish hot from cold, up from down, positive from negative, good from bad. Everything blurred into one jumble of hazy gray. Much like my attitude 4 years ago, yes, 4 years have already passed since I was diagnosed with Multiple Sclerosis; I trust that I will be in a better place in one week than I am at this moment. The fact that I deeply trust that I will be fine is the reason that I WILL be fine. Take note of the words I use. I “will.” I am “willing” that I will be in a better place. I “will” happiness. I will trust. It is important that my trust stems from a deep place within me. It denotes a genuine belief in myself. I cannot predict where I will be exactly, but I am already envisioning a more mature place, a perspective that rises above oneself for the greater good. In order to successfully complete this, I must trust in my abilities.
I have the ability to heal myself and with the help of a nutritious lifestyle, I have done so. I continue to inspire people to believe in the one person who has the ability and power to heal—that’s you, my friend. I have overcome the loss of a pregnancy, the loss of my precious canine angels, the loss of valuable friends who I will see again someday, the loss of my identity once MS entered my life. I look at my past accomplishments, in my life, in academia, and I have a track record of having life changing events thrown at me and overcoming them with grace. Each new trauma in my life has been an opportunity for me to grow. Just when you think you have had enough growth spurts in your life, you are thrown yet another challenge. The manner in which I handle those challenges I face now will set me up for my future experiences. Remembering my accomplishments gives me solid trust in myself. My mind naturally feels inclined to believe that I will once again overcome all negativity since I have done it before.
When these times strike you, the person with MS, we have to do what I am doing right now. We simply must trust ourselves. I start by removing myself emotionally from the situation, shedding my ego, and seeing the entire picture from a remote distance. The distance creates a safety zone from pain. Pain can impede our motor skills as the MS is exacerbated by stress. Only when we see things from a distance, from a place where the hurt cannot reach us, can we fully begin to heal. Then, when we sense safety, we choose to “come back down to earth” and reconnect with our life situation. I don’t know about you, but when I do this exercise that I created 4 years ago, or perhaps I created it in my childhood, I feel super confident and happy about my ability to not lose control, to not worry, to not fear or hurt. Yes, life may still be stinging, but there is also something new going on. There is a “super hero” effect that occurs after choosing to take control of your emotions. You start to realize that you are capable of being rational during the most critical moments in life where most people lose themselves. A caveat, you must be careful not to numb yourself from what you need. Just distance yourself enough to gain confidence and a better perspective on your life. Then trust that you will be very happy once the dust settles.
I cannot wait to be on the other side of this week. Each day and moment that comes will be opportunities to sharpen my skills. I must be aware of myself more than most people since I can be my best friend or own worst enemy. Stress will only hurt me if I allow it to. Healing and my continued wellness will continue only if I maintain it this garden carefully balanced. Spring has sprung, with leaks and all. I am the gardener of my life and this is weed pickin’ time. I trust in a bright and healthy season.
Last November, we witnessed history of a magnitude that will ring in our hearts and minds for the rest of our lives. Barack Obama is now everyone’s boss. Hope is something we all understand well, living with MS. Michelle Obama’s father lived with MS and she proudly spoke of her father who would work hard to provide for the family regardless of his MS which made it difficult to button on a shirt (we know how frustrating this can be for us). Michelle’s father, a man with Multiple Sclerosis, provided her with hope, with inspiration and values which molded guided her. Mrs. Obama, a Harvard Law graduate, is well equipped with the intelligence and experience to impact the White House with positive change. The time has come for positive changes and true hope.
We, person’s with MS, hear talk about a new medication is being talked about which provided me, for the first time, with great hope for ridding MS from our lives. It is called alemtuzumab. What will it do? When will it be available? Those questions will be tossed for a while until we can take part in the use of the drug. My life with MS has brought me to a place where I hope every single day on my own abilities to control my symptoms. The feeling I get from taking MS by the reins is a feeling of self-empowerment, which brings my self-confidence one step closer to where it should always be maintained. We know that we are what eat and diet is key. What about the rest of this body human?
Healthy foods, foods that are alive, vegetables and fruits, these are all good things that enter through your mouth. Think about it. You grab a red pepper, take a bite (ok, if you’re me, you grab a red pepper for lunch and take a bite), and you masticate. It’s funny how we just eat and do not think about the process that is occurring as we eyeball the next item on the list to be devoured, as we reach for the tantalizing cheesecake or the dip rich in saturated fats.
Next time you eat anything, think about the process. The masticated food is swallowed— gulp and down it goes. It drops into your stomach acids and the factory takes what it needs and passes what it does not need. Visualize this eating process. Just because the food item is gone, does not mean you will not see it, or its effect after eating it. That goes for the donut (which you will most likely see on your thighs), as well as that red pepper (which your entire body will smile at the site of the antioxidants and vitamins it releases). Your cells will be partying when they have the best guests at their party arriving just in time. Those same cells will not know what to do with a cheesecake, they have no need for it. So, why not do what we all do with our items that we “have no need for?” Store it. Yes, it becomes fat, stored away for a rainy day. We have MS, it’s always “raining”. Why allow something that will be wasted to enter through your mouth and INTO your body system? Oh yes, right… the taste. You got me there. Although, Tofu cheesecake is quite tasty and yes, I am speaking of the vegan kind meaning no animal products are used in the making of said cheesecake.
As you know, I do talk about our bodies and cannot speak about our entire systems without mentioning the other components which are vital. The Mind and the Spirit, or soul. They need nutrition too! Feed your brain. Learn something. Keep reading, keep learning, keep feeding that wonderfully complex brain you have in order for it to feel appreciated and loved. It wants to work for you, it needs to function in order to want to work for you. I am constantly learning, even when I was not in graduate school I was learning a language on my own, or an instrument or a particular subject. Quantum physics is my new hobby though it has been a passion of mine for over 10 years. I know my brain is happy when I am hungry and feeling lethargic. As soon as I eat a sushi roll with vast amounts of ginger, I feel that brain revived and nourished, ready to take on new theories and the exploration of inter-dimensional realities. What a trip! Another salmon roll, please…Einstein-Rosen Bridge awaits.
The act and art of cooking might be your mind workout. In this case, many other senses are engaged in the learning process from your olfactory sense to your motor skills, keeping them in tune, keeping them in practice, dropping things along the way, cleaning them up, letting Dunkin’ (or whatever your dog’s name may be) eat the treasures that make it to the kitchen floor. As you perform your mind work, you may make mistakes along the way. This is where you must take note of your SELF. We are not perfect, people. We drop things. Frustrating, isn’t it? I find it entertaining. When mistakes happen, when tragedy happens, when things do not go our way, we, as human beings, tend to be hard on ourselves. We as human beings with MS tend to be HARDER on ourselves and I believe that our sensitive natures are partially to blame for our dis-ease in the first place. If at all true, and we know this is a possibility, I purport that we change that from occurring as I have done in my own life.
For example, my partner and I argue. His feelings are hurt. Mine might be as well. I do not allow his state of mind to affect my view of my universe. I must sound harsh, let me explain. I was on Spring Street yesterday and wanted to walk along my favorite brick wall (maybe I was a vine in a past life) when I noticed he crossed to the other side of the street. Instead of not walking along the path I wanted, I crossed back and we walked along the path together. He might have felt awkward or, ignored until I communicated with him that I want to enjoy the color of the wall. Had he felt negatively, or hurt, it honestly would not have mattered to my state of being. This is not to say I do not love or care for someone, this is to say that I am choosing, to allow myself to create happiness in my life. When another person, be it a partner, parent, co-worker or friend, is at odds with you, that is their state of mind, not your own. I notice that all of my life I have been so cautious to not “rock the boat” to not “hurt anyone’s feelings” that I was walking on eggshells most of my adult life. Those days are replaced with love for the other person, at all times. This “de-bugging” of the self does not happen overnight. As a Latin woman, I was raised in a way that was harmful to my spirit, when it comes to the care of others. Everything was about “others.” We cannot care for another until we are cared for. Let’s take a page from the airplane safety guide. We cannot place the oxygen mask on a child until we are inhaling oxygen ourselves. I am inhaling from my own safety mask (which I applied) at all times.
Just these couple of things are enough to give your brain something to chew on. Chew a lot before swallowing. I am talking about food products as well as material for our brains, be they academic, or as a hobby, or even a glam mag, whatever makes you happy. Do not believe everything you read or see. Ask the nutritional value, google it, be aware of what you are ingesting, both for your body and especially for your mind. Ask questions and never stop until you get an answer that allows your spirit to rest. When you live your life this way, you are elevating your state of consciousness. That is the first step in healing your dis-ease.
Congratulations, you are a hope machine. You can feel it, imagine what it is doing inside of you…reaching every cell, empowering each cell even on the quantum level. That is what happens when we heal, with antibodies or not. That is powerful. Visualize hope in each cell. Now visualize it before you go to bed, as you drift off into sleep. Love every cell in your already wonderful and incredible human body. I love my dogs that have past, though they are no longer physically here. Love transcends the physical. Show me an antibody that can do that. Believe in your own powers to make loving choices and live by those beliefs. Your mind, body and spirit will thank you for it.
Baila means dance, in Spanish. That is exactly what I did in October. I have reasons for keeping my health in top shape and dancing is one of them. When I stood on the wooden floor with my tight Flamenco shoes crashing into the deep sound of the wooden planks, I realized the guitarist was going way too fast. Sometimes, regardless of how well we know a step, we just cannot keep up. I literally could sense my brain trying to keep my legs moving at the pace that I know I can keep up with in my mind. I know beats; I understand rhythms, even those complicated Buleria rhythms of Flamenco which work in twelves. The legs did everything they could and I certainly made it look like I knew what I was doing, because I do know what I am doing, I just do it at a pace with which I can keep up.
I marvel at the quick steps of the professionals. My legs may someday be able to be that fast. Notice, that regardless of the scars on my brain which are very real, I still feel that it is a possibility. Some might say I am dreaming. Well, I am not dreaming about how I went from wheel chair to being ambulant (though not symptom free). If I say to myself, “I’ll never do that,” guess what happens? I will never ‘do that.’ Recently, in my graduate school program, I completed my final presentation for a class that opened my eyes to the programming/ coaching/ positive re-enforcement that I have succeeded at with my MS. With a direct view of the Empire State Building to the north, I glanced at it as I spoke to the class about the powers of thinking, and coaching oneself to overcome adversity. In my case, as in yours, the troubles come with a name. We know what Multiple Sclerosis is, what it has done to us, the damage to our bodies, our spirit, our relationships. When we rethink it all, when we are brave and confront our situation, ourselves, and become self aware, we start to truly heal. The word disease is a “dis”-“ease”, something is not “right,” something is not “at ease.” What if life could be done with ease, rather than without ease, or Dis-ease? I have been living my life this way for three and a half years.
My years of living with MS have not been symptom free by any means. You all know that my right eye is still seeing too much light and yes, it hurts at times, and in the sun, it tears on occasion. I indeed was hospitalized this year and yes, it can be a downer when my expenses go mostly to paying hospital bills or co-pays. Do I concentrate on that? No. I DO focus on the beauty that I DO see, out of both functioning eyes. I get caught up with my feet at times when my brain absolutely knows what it wants my body to do, though my body may not listen. I get frustrated yet I do not become negative or hard on myself. I take that energy and use it to give me more determination to learn a step, or to see my symptoms as an opportunity to appreciate my body more every single moment that I might not experience any symptoms at all. It is all about your personal view of this universe. In my universe, my body is appreciated, loved, revered, cared for, and exercised in order to continue growing. In class, I explained to the students, who are already professionals in their fields, that it is possible to change your thought process to better yourself at work, or anywhere on the road of life.
For at least one week, the skin on my right thigh went completely numb. Wrap cellophane wrap around your leg then touch your skin. That is what my skin was able to interpret, a faint touch neither soft, nor hard, just a touch. This is what I did to get that back. I at first was sad and felt a little let down by my own body. As soon as I noticed my thoughts were actually negatively interpreting my body, I changed the thought process. I stroked the sides of my leg, those sides that were still working well, and I loved myself. I infused love into my hands and my thigh and caressed it. I thanked my leg for being strong and so good to the rest of my body. I thanked it for walking, for working. I honored my body out loud. On occasion my friends will look at me strangely when I will, out of the blue, blurt out, “I love you eyeball!” “Love you skin!” “You’re the best, arms!” I kid you not. As I experienced that serious exacerbation, unable to move my legs as I desired, I spoke to myself out loud. Why would I care what anyone has to say when I am the only human being on this planet who has to live with my body, hence, I am the only human being who can love my body like no other.
This in no way is your typical self indulgence/ ego trip. It certainly is rewarding your body, the limbs, the vocal chords, the swallowing abilities, the breathing abilities, urinating abilities, etc, for being with you, making you who you are. In this universe I do not compare myself with others. That might only serve to cause feelings contempt for those who have it all, yet abuse it. In this universe, I care for myself and if saying positive phrases out loud helps me, then so be it. Not only do we need to feed these bodies the right type of fuel (you wouldn’t put low-grade petrol in your Lexus), we also need to feed the mind with wonderful ideas and goals. Thinking negatively never brought me any good fortune. My fortune began once I escaped traps which kept me at bay from being the inspirational woman that I am. With my humor (you have to learn to laugh at all of the setbacks we sometimes experience) and determination I have gained abilities that I use daily. The skin on my leg is back! It is back to feeling once again (you’re the greatest, skin!) just as I envisioned.
This month, I completed class, danced at a showcase, took Dunkin’ to Times Square to participate in the annual dog masquerade and still managed to do it all while having MS. Class starts again in a few days and I will have to be traveling in the cold temperatures after work and getting home late 4 nights a week. You hear me say “How will be able to pull this off?” You will not hear me panic. You will hear, “this class will be over before the winter recess, and I will get an ‘A’.” I focus on getting it done. I see the light at the end of the tunnel and never stray from it. What’s the point; it will only set you back and make it harder to reach later. I choose to stay present and in the moment. I can truly say that I believe it works since it has worked for me and continues to work.
I brought home these great fresh and crispy green beans. I threw in onions and stir fried them, getting them all warm and ready for more. I added egg whites which I had already mixed in a bowl, added spices, tomatoes, saffron and Wind Horse and I ate healthily and deliciously. Use PREMIUM fuel for the more “sensitive” of engines. It does not stop with positive re-enforcement. We are on this diet to understand the foods we need and those that cause us harm. Since we have the recipes for the foods, let us now start building recipes for the mind to follow. The greatest part of this dish is that it is your own creation. You just need the main ingredient which you will be glad to hear, is bountiful. Yes, you guess it, love. Start with that and infuse it into your daily talks to yourself. You are an amazing human to live with MS. I sometimes think that we get it for being so super cool in order to see how great we can be. Like I said, whatever works for you. Now get your ingredient and start cookin’!
Eureka! Striking Gold as a Pioneering Coach
Rosamaria Sagastume
Foundations of Coaching and Coaching Theory
Professor Judith Hamer
October 18, 2008
Embarking on a clear understanding of coaching requires several texts, discourse, observations and life experience. This task is not as simple as picking up a text, reading and understanding it and putting it into practice. Coaching involves "backbone and heart" (O'Neill 14), emotional intelligence, practice, feedback and goal setting. The reason coaching is part of my daily life unraveled itself after connecting the “coaching” dots. My experience battling Multiple Sclerosis, a disease of the central nervous system, has brought me to a path of holistic recovery thanks to a coaching method I developed on my own out of necessity. As a woman battling a disease on her own, I have coached peers and students to improve their lives and their scholastic achievements using the principles I applied to my full recovery. The path to success was non-existent, much like the Wild West of Executive Coaching article, I “needed courage and compassionate support to confront,” (Sherman, Freas 86) myself during the most trying time in my life. I, the coach and the coachee, created a safe universe where I could cope and flourish as “no standard template for coaching plans or metrix exists” (Sherman, Freas 88). I created a template with a holistic twist that works for over three and a half years and which I use on students and peers. My template relies on self-awareness, which stems from my breath, to the effect I have on myself and others.
The texts alerted me to the congruency between my efforts to cope with a disease, which rendered me disabled at twenty nine years of age, and those principles of coaching. Through self awareness and fine tuning my emotional intelligence, I was able to develop skills which have carried through the greatest success in my life thus far: the ability to be independent, ambulant, and not on any medications or western medicinal treatments. Lying in bed forced to stay awake with a drip of steroids feeding my veins, set the stage for my endless reading about Multiple Sclerosis. I began my mission to overcome the pain, the sorrow, and the fear of the unknown future. As humans do, I panicked. I went through different ways of interpreting my existence on this planet using new language, new words, and positive reinforcement regardless of the dire prognosis which the medical doctors insisted upon. The uphill battle did not break me and I kept consistent with my approach. As months passed, legs began moving, skin began feeling, and tongue began tasting once again. Of all the books I read about MS, none mentioned coaching, though several mentioned meditating and holistic recovery. As Flaherty states, “Being aware of our body and what is affecting it invariably brings us into the current moment,” (Flaherty 101) and it is in this present state where true coaching can take place.
They say that stress and a genetic pre-disposition, is the cause of Multiple Sclerosis, and several other diseases. Flaherty states, “it is stress that does the damage. And this is yet another good reason to attend to the body in our coaching” (Flaherty 105). Controlling the body’s reaction to stress is one of the keys to better health. This is one of my principles in dealing with my body and my disease. After coaching myself to overcome a Multiple Sclerosis exacerbation which physicians called “serious” my body and mind have been “coached” on how to tell when other human beings experience stress. Assessing someone’s body is the first thing I do when I meet a student who walks into my office. Are they round, overweight, endomorphs or ectomorphs (Flaherty 109)? Do they workout, are they lazy about their body and health choices? All of these observations give the coach an edge which “reveal(s) a client’s current mood or state of mind” (Flaherty 105). The years I have incorporated my own coaching skills have taught me that we are a walking tribute to our choices in life.
As the student sits in my office, eager or depressed, I am aware of body language and actual verbal language choices they make, while recalling the comments made by faculty who in this case serve at managers. The Dean, or Director in this case, also comes into play. The Dean sees trouble for a student. Faculty is alerted and the stage is set for the coach (myself) to intervene and save the student from failing in school. As discourse commences, “the triangle coach” emerges. It is easy to fall into “rescue mode” with students especially. The years of coaching my body and my mind to deal with symptoms and to overcome them have taught me that without one’s own “buy-in,” one cannot correct behaviors or attain goals. This goes for students and all levels of executives such as CEO’s, Directors, and entry level employees. As humans, we need to want to change before change can occur. “People often have to unlearn skills or concepts that have served them in the past but no longer work in their current situation and will not work in the future to which they aspire” (Hunt and Weintraub 180). The change that occurred within me was devised in order to live in my current situation, a life with MS.
At first I had no insight on how to change. Most people do not have this insight. After reading several books about the disease I gained insight about my possible futures. This motivated me to never be in a wheel chair again. The capabilities came with time. A realization sparked and inside of me that made me believe that I am capable of overcoming Multiple Sclerosis since there is no known cause for the disease. My real world experience arose daily as I practiced envisioning my climb to being “MS free.” I held myself accountable for the times I would wallow in sorrow. My accountability forced me to change in order to not fall into the same behavioral patterns. It was hard to change. Through the use of models which I incorporated out of sheer necessity, I was able to live with a positive outlook on my health.
The Client Responsibility Model of which O’Neill compares to the Rescue Model, states practices which I have used myself and with my students. Even bed ridden, I focused on my strengths. This is easier said than done when doctors said they could not guarantee that I would walk with a normal gate again, play my guitar, or have the cognitive skills I have depended on throughout my life. When everything seemed dismal, I did not let it get me down. I focused on the square inches of my skin that were not affected by the burning sensation caused by the MS exacerbation. These practices I created for myself gave me a deep understanding of myself and others. Understanding my humanness allowed me to understand human beings in general. If I have the capacity to talk to my body and my mind to the point of 98% recovery, I can use these new findings on others.
Understanding my role in a client’s life is paramount to get the job done right the first time. With students comes drama. In order to best serve their needs, I must step back in order to allow coaching to occur. In Margaret’s case study, the coach is emotionally involved throughout the entire process (Multidimensional Executive Coaching). As a sentient being, I care deeply about someone’s pitfalls and successes. As a woman with Multiple Sclerosis, I know pain and successes so well that I do not have the need to dive into the client to a point of danger. One must allow the client to stumble and get herself up on her own, with a coach to support her with words of encouragement rather than falling to bits. The choice and respect I bring to language with phrases such as “I think you can handle that,” and “what additional supports do you need,” are carefully chosen to always encourage a student (Hunt and Weintraub 153). Experiencing suffering allows me take a healthy step back from the coachee in order for the coaching process to continue. This is my signature presence which I strengthen by being emotionally aware of my client (O’Neill 19-45).
It is through trust that I am able to engage my clients. Hunt and Weintraub agree that “trust in the relationship between manager and employee is probably the most important element of a coaching friendly context” (Hunt and Weintraub 76). Another important factor is timing. When a student clearly states to me that they do not want any assistance, I leave an open ended opportunity for them to contact me should they need to. I follow up in a few weeks to check if the timing may have changed. When a client reaches out to the coach, “immediacy is important. If you wait too long to intervene, you can lose the benefits of immediacy” (Hunt and Weintraub 97). My self-coaching occurred out of immediacy. Had I not been enlightened enough to understand that I needed to do something in the moment, rather than months or years down the line, my outcome might not have been so favorable. Having MS showed me to live in the moment and to coach myself moment to moment.
We are all creatures of habit. As I entered a new world where my own body no longer felt mine, and also could no longer distinguish soft from rough, or cold from hot, I began my new habit. I became a positive woman who coached herself out of experiencing Multiple Sclerosis as a disease. My coaching began in my mind. After a day’s work, I would be so exhausted that I would literally fall asleep, unable to concentrate much on anything else but my betterment and how I would baffle doctors someday. I focused on that goal, on the goal to walk again, to drive and to run my own shower without the aid of someone to check the temperature. The drive was so great to again taste my food and urinate without having to push down on my bladder that nothing, not MS or the doctors, would get in my way of achieving my goal. I coached my mind every hour I lay awake and in pain, reeducating my brain and spinal cord, the nervous system as Flaherty explains:
In essence, coaches coach the nervous system. That may sound strange to some readers and only obvious to others. By saying that, I am proposing that it’s only by reeducating the nervous system that behaviors, responses, and reactions—as they occur in real time, not in reflection—change. We make the novel, be it a new behavior, process, protocol, into the everyday and familiar by allowing it to migrate into the background of our consciousness. The migration occurs when we consciously take on new practices and persist with them. All of what it takes to bring about this reeducation, in alignment with the principles specified in Chapter 1, is what I’m calling coaching. (Flaherty 62)
In essence, I reeducated my nervous system from scratch. It is obvious to me as my behaviors changed forever. I was always aware of my own reactions to the dismal outlook that Multiple Sclerosis paved for me. As the disease has no known cure, the facts would not change for me overnight. Rather than adding stress to my stressful situation, I taught myself to see my life as a positive flow of energy regardless of my abilities or disabilities. When I would come to tears in frustration, I would honor my emotions and allow sorrow to escape as long as I never let it linger. When I walk and feel symptoms on my legs, tiny ants running across my skin at random times during the day, I laugh about it. I do not fear Multiple Sclerosis any longer. I coached myself out of fear and into a body that embraces her disease and herself for I am more than a diseased body.
After coaching myself, without having the knowledge that I gained in this course, my life has taken on yet another approach. As individuals we have the power to surmount and assist others in changing themselves for the betterment of a company and themselves. Honoring oneself and one’s clients is not only something I came up with in an urgent situation, but is practiced and written about extensively. Something inside of me was able to overcome adversity and continues to grow. The Wild West of Executive Coaching article made me a believer that I am a pioneer, a coach who coached herself back to health, with no previous knowledge of coaching. There is no universal template for coaching, there are only universal coaches, those of us who have a deep understanding of the process and live by those standards daily.
This is an amazing story – with work I think it could be published. So the course has given you a vocabulary to talk about things you already know! Thanks for telling us about this. A-
Works Cited
Hunt, James, and Joseph Weintraub. The Coaching Manager : Developing Top Talent in Business. Minneapolis: SAGE Publications, Incorporated, 2002. 76, 97, 153, 180.
O'Neill, Mary Beth. Executive Coaching with Backbone and Heart : A Systems Approach to Engaging Leaders with Their Challenges. San Francisco: Jossey-Bass, 2007. 19-45, 76.
Flaherty, James. Coaching : Evoking Excellence in Others. Chicago: Butterworth-Heinemann, 2005. 62, 101, 105, 109.
Sherman, Stratford, and Alyssa Freas. "The Wild West of Executive Coaching." The Harvard Business Review Boston: Nov 2004. Vol. 82, Iss. 11; p. 82-90.
Orenstein, Ruth L. Multidimensional Executive Coaching. New York: Springer, 2007.
We Are All Stars (October 2008)
Where has MS taken me? It has taken me to the deepest recesses of my mind, my body, my spirit. For three and a half years I have journeyed with the knowledge that my brain and spinal column have lesions, scars, bright spots on MRI scans, which dictate that I should be in a less than favorable state. My state is favorable, save the symptoms. Those dreaded tingles and numbness, the creepy invisible ants on our legs, crawling on our backs and all over our limbs for only us to experience and brush away, I am talking about those symptoms. After riding a bike, if we are lucky enough to still have that skill, the sore legs and feet that choose not to work well for another week as they repair. Then there are those clumsy hands, which drop glasses onto hardened floors, breaking on impact. I can thank my sometimes clumsy hands for my “eclectic” collection of odd glasses and mugs as “sets” which come in four always end up missing a partner. My clumsy hands come from using them on a keyboard, or after holding grocery bags for too long. Even steering my bike, the grip my hands utilize leaves me tired in the hands, and yes, I message them, and luckily, my partner assists at times. Why am I talking about symptoms? I speak of them because they are always present and try to get us down. I do not get down about it. I thank the universe I can experience them as a way to appreciate my body.
I use the word “clumsy” for you to understand the scope of the sensation, if you do not have MS but want to know how annoying this particular symptom is. When referring to my hands, I call them “silly hands” when they are tired and cannot quite seem to open the simplest Splenda packet. I never use negative terms in reference to my amazing body. I love my silly hands, and heavy legs. I thank them daily for keeping me going, walking, even if I do feel “ant central” pacing all over my lower legs. I simply swipe or scratch the invisi-ants as I walk. Hey, I’m in New York, no one cares. People here swipe away invisible flies, although those people tend to be inebriated and on the verge of taking a ride to Belleview. Why am I telling you this? I am letting you know how my body works for me, even when MS peeks out its head and reminds me that I have a disease.
No one told me how to stay positive and confident after being diagnosed. I just did. How did I “just do” that? Well, it was not easy, that’s first and foremost. Lying in bed with restless legs and pains searing all over my skin was not the most nurturing and calm environment for me to deal with the new findings. Did I have a choice? Not really. It was my “flight or fight” response. Apparently, I am a fighter. In order for me to have won that fight, I did have to “fly” to a certain extent. I disengaged from my body and created a world in my mind where I could walk, run, dance, feel, taste, see, love, have kids, never need a cane or a wheelchair, and have a successful life, etc. When I opened my eyes to realize that I was still barely mobile, I sighed and let out sorrow. That’s the key. I let out sorrow. I did not and do not let it in. I maintain a healthy garden, folks. No bugs allowed. No negativity allowed.
Now, I am not Richard Simmons or carry confetti with me everywhere I go, and I sure am quite the laugher. When my legs are acting up, I sigh, let out sorrow, then inhale to focus. Kids, there are always going to be negative energies that try to get you down, take you down and keep you there. It is quite a shame of human beings who consider themselves adults to act in such ways. I am sorry for any of you who have such presences in your lives. I know how tough this can be on anybody. We already have a lot to think about on any given day, or moment, when we walk up the steps to a bus, when we get into our vehicles, when we raise a fork to our mouths. We do not know if we can make the step sometimes, or taste the soup, or feel the steering wheel (and if you are in AZ, I hope you can feel it or you will be scorched!). Maybe nobody has told you but I will. As a person living with MS, you need to be selfish. At times, I want to please the world, it is in my nature. There are times when I matter more than anything and it is up to me to put myself first.
I am a graduate student who is doing very well in her scholastic endeavors. I also am a flamenco dancer who loves her body with every class I take. After my hospitalization earlier this year, my face and neck/ back area went numb. It was numb and swollen to the touch, quite annoying. In fact, so annoying that I decided I would get rid of that symptom even though the doctors said it might never go away. It took several months of fighting the negativity and yes, it was painstaking since with MS, we never know what will or will not come back to us. (Trust me, when I had bladder problems I did not enjoy the idea of having to push down on my belly to assist with evacuating urine from my bladder, but I certainly did it. And yes, when I did it, I would at times giggle, after feeling sorrow. I thought of myself as the Pillsbury dough boy and said “wow, I’m 30 and I’m the dough boy.” That has to bring a smile to anybody’s face.) By June, I was feeling my face again, and once again tasting the range of sweet to bitter. When I had control of my left arm, I chose to challenge myself with a solo dance. Studying Flamenco allows me to use my body and make it stronger while making me incredibly happy! It does take me a bit longer to learn choreography, I notice. My mind and my body disconnect at times and something that I thought I knew turns out to be drastically different than what it should look like. Do I panic or cower? I laugh at my flops out loud, right there in the studio space. I also laugh when I add my own steps, which usually include a swiping of the invisi-ants that show up when I am about to successfully complete a new set of steps.
Dancing has kept my body in tune with my desires to be a healthy woman who happens to have MS. Regardless of this disease, I have performed twice in New York City. Yes, your fellow “MSer” performed in Manhattan and shall continue doing so, regardless of any “bugs” that want to pinch me with sorrow. If anything, when I feel symptoms, I use it as a reminder of how strong I am. I am only on stage for a few minutes, which allows me the pride of self-expression and a lot of recoup time. At times I do not tell you how much pain I have to deal with, my partner truly knows as he is the one who messages my hurting limbs. He is also the one who helps me up the stairs when my legs have a difficult time of moving. He will either lift my legs from behind me, or he will pick me up and carry me up the stairs (whether I like it or not at times). I am strong of mind to not let it get me down. I appreciate that I have someone so kind and strong, instead of thinking that he can, at any moment, choose to find a woman who will never have these issues. If allowed, a flood of negative thoughts can enter my mind and end up eating me alive. What a waste of time. I can be reading instead. It just makes no sense to wallow in misery. Has that ever worked for anyone? I am strong of mind to learn and earn my graduate degree. My strong spirit attracts positive people and experiences into my life. I am strong of heart to love myself so much that “silly hands” is just another term of endearment I give my body.
The body needs fuel. As I am active and work out at least 3 times a week and do a lot of walking, when my legs are not asking for respite (and they do ask, and when I need it, I certainly listen to my body and rest), I fuel my body with really cool stuff. Walnuts are always my snack buddy and now that holidays are coming, the walnuts are here, as are the chocolates! Yikes, the chocolates. What can I tell you folks about the dangers of saturated fat that you do not already know? I will tell you one thing, I ate chocolate yesterday and I can because I am that healthy. If I were sedentary, I would not eat chocolate. As stated, I love me. I want to stay this attractive and healthy for as long as humanly possible. Since I work out, eat well, stay healthy, I can indulge at times. If you do not work out, whether or not you have MS, please do not eat junk. You are what you eat, and everyone wants to know what I am eating these days since I am looking better than I did at 18. Two words, WAL-NUTS.
When I snack, I grab the bag of assorted nuts and raisins. I will not eat too much of them, since they can make you gain weight if you eat more than your share. I absolutely love being 33 years old and having people of all ages shocked to hear my age. I shocked a friend the other day who thought I was 22. He is only a few years older than I. He made my day, and it is a tribute to the work I do with my body. My mind is being taken care of with school, and several other lucrative projects, some taking place out of state. I have working limbs which I challenge and improve daily. Granted, my limbs get very tired, more tired than the girl next to me in dance class, yet I do not quit. My mind also gets tired, after working hours on one project, yet, my mind will not quit being positive and making connections. My heart is pumping rich oxygenated blood through my entire body because it is happy with the rest of me. That is the key, staying happy. That is why I dance, learn, and love.
I first apologize to the readers who have asked me why I have not written. I now know why I have not written since January. I was blocked mentally, having other things on my mind, like the stability and future of my relationship with Wind Horse. I searched for the love I had inside of me to blossom. It certainly did. I learned patience, how to comfort a man, how to listen, and how to surrender to love. I thought I could not express that emotion for another. I had programmed my heart to not feel it for a partner. I had succeeded for four years. This year, I realize that regardless of my attempts to not allow myself to fall in love with someone, something magical did indeed happen. It took a lot of pain and time to get to this point and now I know that I can indeed arrive at a true level of intimacy with Wind Horse.
After several months of stress my relationship as well as being laid off right after Valentine’s Day, I allowed the stress to get to me, and I had to be hospitalized in March. Since then, I still cannot see well from my right eye. I see too much light, and cannot distinguish the spectrum when light is refracted off of sequins, water, or glitter. Instead, I see a blinding light, making it difficult for me to walk on the street without a visor or cap. I cannot make out the distinguishing marks and colors of people’s faces or see their feet as they walk along the street towards me. I have adapted at work. My screen at work is quite dark. The lights in my apartment are seldom on, except a few dim lamps. I miss my right eye, I miss seeing as I once did. I know I will get it back someday… if that never happens, well, at least I CAN see.
The hospital bills are a lot, I won’t lie. They do stress me if I allow them to. I have so wanted to rest for a while, to take a much deserved vacation, or just to not have to spend any possible savings on bills I owe to hospitals or to the mistakes of the past. One thing I am very pleased about it that I do not have to stress about it and Wind Horse is there to remind me of that. I am naturally inclined to want everything to be calm and fair, when things are not, I hold it in, and it eats me alive. Such is my nature for justice that when there is injustice, I find it very difficult to not feel that pain, those wounds that cut like paper cuts on my veins, a sting I cannot reach.
As time moves on and wounds of the past heal, I realize that I am still in love with Wind Horse. Have you experience that before? I have not. Well, almost never. I not only love him, but after one and a half years, I still have that “in love” feeling about him. Yes, butterflies, yes, daydreams, yes, also the occasional sigh escapes my breath at the thought of his heart, his physique, his essence, his word. Wind Horse is a man who not only says something, he actually will do it. A man like that can have a woman at his heart’s beck and call. Better said, my heart cannot deny a man like that. As long as he keeps his word, he is a man in my eyes. After the torrential storms we have endured, and as any relationship will, we have grown together. I can honestly say that I have ever experienced it with any person before Wind Horse. It’s strange to me, foreign, to love someone to a point of calm. Then again, there is such passion when we are together, that people always notice us walking together, they turn heads, volunteer information, compliment us, and want to know who we are. Some things are too interesting to ignore, Wind Horse and I fit that bill.
I fit that bill. While in Boston for the 4th of July, I met several interesting people who all tied back to me somehow. Nothing is a coincidence, so when the bartender at Fenway said he lives in East Boston, my home town, and the man beside me whipped out his Arizona Driver’s license and put it on the bar top next to mine, I was not at all spooked. Yes, I did have a Sam Adam’s Summer Ale, and I also walked about 6 miles that day. My legs, unlike my eye, were working with me as opposed to against me as I strutted from Mass General Hospital to City Hall, to the Wharf and cabbed it to Fenway for a visit to my green church.
I certainly did eat a very swank unfriendly clam chowder though, the feeling of warmth it brought to my tummy and my soul was worth the risk for me. I am still sticking to my oils, low saturated fats, and have started chanting. There is more to me that meets the eye, like the Transformers (yes, I would be an Autobot, who actually roots for the Decepticons anyway?). I still believe that I am going to succeed in living a healthy life with MS, inspiring people along the way. This year, thus far, has taught me to follow my heart, to look into my self and to face myself head on. Think: Luke Skywalker in Dagoba. It is difficult to admit your faults, dare I say, it’s a yucky feeling. Personally, I rather have a BAMN green tea ice cream, but that will only make me fat. Facing myself has less calories, and is sure to nourish my soul and feed my relationship in a healthy, swank friendly way.
I don’t even know where to begin. Normally I’ll have something already in my head, a thought, an image, a bromide, something, anything. I’ve been feeling loopy lately and I am at a loss for where I should begin my month’s story. Last night, before the let down of 3:10 to Yuma, I proclaimed my apprehension towards my body in the present state. I have been trying to make sense if what is happening to me lately. “Symptoms” is too easy of a word to describe it all. Yes, my legs are heavy; the stairs to get onto the elevated subway is taxing, to say the least. For the first time in years, I thought of using a cane as an aid. These thoughts came into my mind, I entertained them. This is not like me. Something is off.
I’m too positive to let anything get me down, even my own body getting tired is hard to listen to. I’ve been staying up late watching baseball because it truly makes me happy. It isn’t a pill or a drug and it gives me pleasure to watch America’s favorite past time during stress. I’m stressed. My body is telling me to listen and I just will not listen as much as I need to at times. I am learning to listen, life is always a work in progress. The part I honestly cannot deal with is not sleeping. MS causes restlessness at night. Cutting into my sleep is like cutting into my body, making tiny slices into my nerves, disconnecting axons and causing multiple scars in my brain. Stress it’s my mortal enemy.
I feel disconnected from my body. I feel like I was coasting on a reliable auto-pilot and suddenly, the pilot chose to vanish, and I’m left in control, with a manual written in Greek. I am known to say a few phrases in Greek, but a scholar I am not. The sights in front of my eyes, a blue sky, a silver train, the Empire State building, buildings, cars, phone, all of it seems foreign to me. Dunkin’ dog and some friends are the only things in my life that remind me that I am on planet earth. Meeting new people also reminds me of my nature. I’m a people person and I’ve been isolating myself from my nature. I need to get back. I have to focus. I need to get a degree in whatever I feel will befit my soul, my talents and though I am great at delegating responsibility and coming up with solutions to large problems.
I had some energy work done last week at Union Square and was told I am a “3” path number. He mentioned that I am the most sensitive of people out there, empathic, gifted when it comes to picking up on people’s energies. I sure as heck have a time here in New York City, especially now, living in the East Village. There is so much pain here, especially from the old timers, the real people that have resided in the East Village all their lives. I notice that most of us are not doing what we are here to do. I cannot speak for everybody but I sure as hell can pick on it streaming past me in the subway, on the sidewalk, and vestibules. Maybe it would be easier if I just stuck with the idea that we are all molecules just bouncing around.
My molecules stopped bouncing a few nights ago. My legs had pains, feet were in and out of “pins and needles stages,” aches in joints, on fingers, on my shoulders, skin was searing hot. For a few minutes I thought about calling a doctor. I played out the visit in my mind and decided going on steroids and not sleeping for the next two weeks was not an option. I want to deal by controlling my symptoms with my mind. So, I chose to take 2 strong prescription sleeping pills and slept for 13 hours last night. I’m so much better today, so far no pains in legs. What a difference one night’s rest makes.
As I got into the packed train yesterday, and my legs were in pain, I immediately walked up to a seated passenger on the “disability seats.” I calmly asked, “may I please have your seat, I am a disabled woman.” He nodded and moved and of course, watched me the entire ride thinking he had just been conned out of a seat. Truly, I was about to let my pink eyes swell to the point of crying. I do not understand why I have MS, I do not understand what the point is. Saying “I am a disable woman” out loud bothered me. I am not DISabled. I wanted to say “I have MS, and it means I have to deal with everything that you have to deal with, but it also means I might not be able to walk someday, according to the doctors and such, so, can you please give me your seat because if I stand, I might fall or have these horrible pains on my weak knees and no one will understand because I look normal to you and I’m really not the same as you, if anything, I am “more”-abled than “dis” –abled, since I still have the courage to get around New York City and deal with no sleep and lots of stress and people who just can’t seem to understand my needs as a woman with MS and so on and so forth, so can I have your seat… please?”
Apparently, communication is the key here and luckily, Wind Horse and I are both writers at heart. If and when communication breaks down, whether it is in relationships or if the disconnect occurs in nerve impulses from our brains to our appendages, no one wins. My communication grows daily with Wind Horse, with the public, and with my body. I write about it in other places as well and for a slice of another quick article I wrote please click: Face of MS I should be on the first page, at this point, I may be on page two. Either way, you will see my purple glasses and know it’s the purple girl, with MS. She happens to have MS. MS does not have her.
I am staring at the Queensborough Bridge, better known to you as the bridge from “Taxi.” It takes you from Long Island City (LIC), Queens to 59th Street in Manhattan. You have also seen in it in Spiderman 2, where the tram collapses with people riding it to work, or in City Clickers, where Billy Crystal is on his way to work on the tram, a look of utter boredom on his face. From here, the bridge’s structure looks like webbing of caramelized sugar drizzled over a surface to harden. The structural skeleton, almost lacey and delicate in its appearance, supports buses, trucks, cement, not to mention itself. At times, society’s weight, it’s expectations of a “disease free appearance,” weighs on me when my legs weaken, my mind races in that fuzzy confusion that makes no sense of “making sense.” The frills and delicate nature which defines me gets lost under all of that weight. Who can a bridge cry out to?
I wondered last night, why am I to learn the same lesson over, and over. Apparently, I have not yet learned that lesson or history would stop repeating itself. My question is, “what lesson am I to learn?” Admitting I feel weak does something to me. It feels unnatural. Yet, this morning, on the ride to work, I stood in the train and noticed my legs wanting to buckle. They are exhausted; they are my recent stress manifested. As much as I like to be positive, I also choose not to relay my pain to anyone. Last night was rough for me. I was not exacerbating, though I was fighting those demons of the past and present. The tingling started in my fingers, as well as the dazed and confused feeling which makes me angry since I am astutely aware of my surroundings. I ended up cuddling with my dog, again.
My nature is to live and let live. I tend not to mess with anyone’s personal business unless I know I have words of advice. I am not nosy, I do not intervene in anyone’s privacy and not many people understand this of me. Last night, as I lay in bed, my mind racing in confusion, not knowing where I even was for a moment, I yearned for simpler days. I yearned for my old home in Arizona, my old mate, my old dogs, my pool, my pomegranate tree, and MS free body.
April Showers Bring May Flowers (May 23rd, 2007)
After a rough and rugged April, May is shaping up to be quite the blooming month. Allergies aside, I feel great about how bright spring looks. I was recently visited by someone who insists on making sure I know he means business. Yes, I’m talking about “love” business. As I have brushed the potential for a relationship aside, due to my very daunting past with relationships, Wind Horse took it upon himself to fly out to NYC to make sure I am aware of his intentions. He could not have gotten here sooner, as I had already made plans to forget about him that same weekend. The weekend was supposed to be a regalia of fun, rock and roll, and staying up until the sun rose. Funny enough, with Wind Horse here, the weekend was pretty much exactly the same, except he accompanied me in my adventures in the Lower East Side karaoke, Central Park hoola-hooping, and Midtown sushi meals. I have not felt that comfortable and that free in years.
Several times I reminded him how I am not ready for a relationship, nor am I prepared to fall in love and give myself to another person for a long time, maybe even never. Where most men would back off, Wind Horse actually embraced all of my concerns with open arms. He is not the past countless men who have stopped calling me after telling them about the MS. Nor is he seeking sex alone and no commitment. Folks, I have a real deal on my hands and I’m still not ready for what’s happening. Who is to say if I ever will be ready? John Lennon said “All you need is love,” once he was a multi millionaire and lived in the Dakota Building in the Upper West Side. Love doesn’t pay the rent. Wind Horse is starting from scratch.
I am about to turn 32 years old on June 11th. I’m not that innocent 25 year old girl who willfully put herself aside to make a relationship happen. He, on the other hand, is a 25 year old man who reminds me of myself 7 years ago. I will embrace his affections, our connection which is the most unique I have experienced thus far, and I will also keep my path free to meet whom ever I may meet. Truth be told folks, as of now, I’m content with the ‘youngen.’ I enjoy his reactions to my spontaneity. He doesn’t moan and groan as most men I have met. In fact, he can at times ware me out! That’s saying a whole lot!
As far as May goes, I’ve been missing going food shopping like I used to in Arizona. I used to love getting in my truck and choosing from beautiful produce at great prices. I loved the ample aisles and cleanliness that my Fry’s in Phoenix offered me. Contrary to my food shopping days in Arizona, I have taken to shopping online for my groceries as it is just impossible to get all the items I need in one old-as-dirt Key Food in Queens. I actually get better prices on every single item when I shop online through FreshDirect.com. I still like choosing my produce at the old-as-dirt Key Food though, as it is truly an organic experience. I want to touch the pear, examine its firmness, smell its sweet gritty skin, and weigh it. There is an art to picking fruit, and while I still can, I choose to not let go of that experience.
When I relax and watch a flick, which these days are DVD’s of “Deadwood” the series, and the wonderful “Six Feet Under” ( I love you, Nate), I tend to make myself some English tea with soy milk, and have some nibbles. If I’m not eating an apple, or honey dew, I will be munching on the crunchiest healthiest little cookies called Almondina cookies. Look these up, they are so natural and tasty. They are expensive, but they last me weeks since I will have one or two with a cup of tea. For breakfast, in this fast paced city, I eat and run. At times I have some cottage cheese with pineapple. The cottage cheese is the lowest fat, of course. I also have found organic healthy fruit bars and granola bars that satisfy that morning hunger without breaking any SWANK dietary rules. Fresh Direct.com actually lets you view the nutrition and the contents of each item prior to adding the item to your shopping cart.
Since I have been eating egg white egg salad with lettuce for lunch, I skip adding safflower oil to my meals. The mono and poly saturated fats are found in the mayonnaise, so there is no need to double up on fats. Of course, sushi is always tops with me. I could eat it daily, but that would be quite the cost on my purse. When I crave protein, and I do on a daily basis, I make edamame. In case you have never heard of edamame, allow me to be the first to introduce you to yet another legume. It’s a soybean which is not only yummy but also so much fun to eat! You’ve probably read it on the list of appetizers in a Japanese restaurant. Next time you see it, get it! That is an order!
When you get your edamame, please do not eat the shell. You actually put pod in your mouth and squeeze out the beans. The pod gets scrapped. I actually brought some for today’s lunch. I just microwave these as they are “ready to eat.” Usually people add salt to them to add flavor. Sodium is not the best for us, MSr’s. Too much of anything is not a good thing. I suggest just a tad of salt if you are making them at home. Once the water boils, add the beans and wait 3 minutes and they are ready! Kids love these things, and they are a fun alternative to your mundane vegetable side dish for dinner.
Those are just a few new allowable foods I have discovered. There are so many more I have to tell you about! Hopefully, now that I will have a new warrior in town in June, I will be able to get the perspective of a meat eater who has no dietary restrictions. Did I forget to mention that? Oh yes, it looks like Wind Horse is moving to NYC. Yours Truly is one of the reasons he is coming closer to me. I guess time will tell, and for now, this recent piercing pain in my right shoulder that runs down my right side to my quadricep is getting checked out by my physician tomorrow morning. I have a feeling that recent stress is to blame for the pain. Sometimes, I have to feel the depth of the pain to understand and no longer fear it. That’s the part about being human that ticks me off. Mostly every thing else is tops. It turns into a whole other game when you start sharing it with someone you enjoy.
People are Strange (May 7th, 2007)
I had lunch with a new friend today. I ate a scrumptious pink cantaloupe, the meat of the fruit creating a milky effect with the cottage cheese that lay on top of my melon halve. During the wonderful conversation (isn’t it great when you can speak normally and not have to “dumb it down”), my right hand gripped the large table spoon with precision and power, digging into the ripe fruit, scooping out a manageable piece, affixing snowy white cottage cheese on the spoon and inserting the fruit’s perfume into my mouth. The first bite, as it touched my awaiting taste buds, was sheer decadence. As I made love to my lunch, my friend tackled his greasy burger with fries. We sat at a diner in New York City, and for some reason, I have a feeling I enjoyed my meal more than he enjoyed his.
I am bold with my MS. When asked, “what happened to you a couple of years ago,” I pause, and if I care enough about the person, and if they do not work directly with me, I offer the truth. After telling Lunch Mate about my MS, I got the response I normally get. He was amazed at my will, my strength, sense of humor and he actually gave me a compliment. Apparently I am “the whole package.” I think I am supposed to feel good about that…for some reason, things are not clicking with me lately.
I have put Wind Horse on an “emotional hold.” I do not know if I am capable of choosing to give myself to someone ever again. The experiences I have had have honestly scared me from allowing this to happen. Recently, about 3 weeks ago, I got a call from an ex whom I have not heard from in over one year. I did not want to ever hear from him again, and there he was, like a phantom, haunting me. Needless to say, scars were tugged, and more were made. Like Jim Morrison sang, people are strange, and I just do not understand their negative behavior. It racks my brain and is quite illogical. Apparently, he went bankrupt and chose to take me along for the ride. I have realized that after the Dunkin’ Dog debt that I incurred after saving my dog’s life in August, and now a new mounting, looming, financial responsibility for having co-signed on a car loan with said ex, I am going to be living out of my means here in NYC. Ask me if I care.
I will be fine. I do not know how yet, but I do know, I will be fine. I won’t die, I won’t get ill, I won’t get another exacerbation. I will succeed. I will achieve. I will live better than I ever have, regardless of the people who have come into my life and have taken pieces of me with them.
Lunch Mate folded his hands, looked as deep as I will allow him to look into my eyes, and was gripped. He saw many layers to me, he was fortunate enough that I gave him a couple. I let him look into the pineapple heart in my chest. I let him see that radiating purple orchid hue which hovers around my figure. I did not let him see the pain. I did not let him see the struggle. I did not let him see the desire I have to understand love once again. Those layers are still locked, kept safe from predators who, in the past, have taught me to keep them close.
He asked me what I was like before MS; my answer, “exactly the same.” I do have a bit more patience, I do not stress as much as I used to, my diet is different, etc. As for my appreciation for life… it has always been this deep, a thick passion milkshake that will not run through the straw no matter how much your face turns blue. I got to thinking about why? A most dangerous question and we know it. How many times have you asked that question? Why did my sister, or mother get MS? Why did my daughter get it? Why do I have to deal with it in my life? Why? Why? Why? See where this goes? No where. And fast. I rephrased the question once I got to my office.
What have I learned which I would not have otherwise learned had I not been diagnosed with MS? The three things that come to mind are friends and family, relationships (with men), choosing not to stress. My family has taught me that blood is indeed thicker than water. Friends will be true when they are really your friends. I have a handful of them, and they are speckles of gold on a miner’s hand. Men have taught me to protect myself to the point of numbing myself to love. Stress is more manageable, though these past few weeks, the past month, proved to be stressful.
After Lunch Mate’s comment, I looked at him, and then stared off into my own world. I’m a package alright. I’m a purple gift wrapped package with a gold bow. I am that package I have been seeking for all these years. I am satisfied with myself to the point of not needing anyone for more than a physical connection. I have even, as natural as a river flowing, recently chosen to slow my flow with Wind Horse. He is in the southwest, after all, and my heart is tired of having to reach so far to get a whisper of warmth. If and when he gets here, things might change, but for now, I have a superhero to tend to. It’s spider man week in Manhattan and I’m not going to miss it! Pass the air popped pop corn, please!
Even in these times of introspection, my sense of humor ends up pushing through. I have my health, my dog, my family, friends, a super hero, fruit…all I need are large man-hugs on occasion. Plus, I have so much to look forward to! Kings of Leon are right before my birthday in June, The White Stripes are at the end of July, The Red Sox are leading in the division, and it hasn’t rained in almost 4 days! Plus…I have to write about the many new safe and healthy snacks I have found that suit our needs. Apples are my nee favorite. Fiji apples and sliced on top of salads, and you have summer fresh in your mouth! Stay tuned for snack tips next time. I need something to munch on while I ponder my next potential relationship! ;-)
Spring Has Sprung (April 2007)
After three weeks of kicking this cold that does not want to go away, spring is taking a while to “sprung”. I literally snowed here twice in the first week of April. Granted, the flakes wandered without a home, curious themselves as to why they were falling on trees already showing signs of buds on the branches. Winter is taking its time in leaving while spring is on its normal cycle waiting for nobody. Old habits, like winter, sometimes drag themselves in leaving us as well. Unhealthy eating habits that should see their end, for example, may take time in ridding itself from out lives. Negative thinking also tends to outlast its stay when it pervades out mind. For me, old relationship scars are taking their time and rearing their snowy heavy flakes in the atmosphere of my mind.
Spring means new things, a new purse, new shoes, new leaves, new flowers and tulips! How do we enjoy the new things when we get reminders of the past? Recently, old thick scars were tugged at when I discovered that I am still very much missing a life I might have had, had I stayed on a certain path. While having no regrets, I cannot deny that I miss my friends, my best friends, and childhood friends, experiences we shared and would be sharing had we stayed together, in Arizona, in a relationship, in a certain career field. This is where I am supposed to tell myself that I am only closing the doors to wonderful things when I get trapped in this mind set. When there is history between two people, I find it impossible to say goodbye.
Memories are everywhere. In fact, according to my tea tag on this morning's Green Tea, "Memories are in the heart," so says the Marquise De Sevigne. I have recently come to understand that all this talk about saying goodbye to someone is utter bologna. I don't want to say goodbye to those memories; yet, I don't want to be hurt either. Is there a happy medium? I can't afford to feel that sting any longer. It rarely happens, but it's apt to happen.
While new beginnings occur all around me, new job, potential new relationship, I find myself dabbing figurative analgesic on old wounds which are also beginning to arise once again. It has been a while since I allowed myself to cry over something that occurred in my past. Recently I had another man stop communication when he found out I have MS (this came after his handful of 'I love you's,' no less). I didn't cry because I honestly must not have cared that much. Old deep wounds, on the other hand, when tugged, leave a very specific sting. This sting lasts regardless of how many words I write, how many people I talk to, how many tears I almost shed, how many seasons have past. I would like to cry for it, maybe let it all out, and as I type, I can't get a tear out. I am trapped between the love I am budding for someone in the present, and for the life I had which I mourn. I miss the woman I used to be.
I used to be this loving woman who was able to focus on one person. I have become a woman who desires that again, and has been through turmoil with love which has taught me not only to not play with fire, but to find other ways of warming myself which leave me out in the cold, putting on layers of sweaters. The sweaters are basically my hobbies. My hobbies are more than mere hobbies, they are my friends who try their best to get me out of a thought that whispers about kinder, attractive, fun men who seem to not exist.
Then, like a season on its unstoppable schedule, I get the best gift, the birth of love. He is not anything I thought I would ever want, and here I am, softening up like silly putty in the sun. Hard at first, tough to break, but with the right amount of warmth, it gets quite malleable. My friends, those who know about him, are in shock. They here me speak and tell me that they never thought hey would hear me speak like that (Thanks for the support, guys, sheesh).
As you know, I'm not someone who lies about my situation. IF my hands area numb, you know it, if I can't evacuate completely when I go to the bathroom to urinate, you know it. If I find the best miso soup in the city (which I still think is downtown and I never mentioned that), you know it. So, why lie. I am in love? Am I in love? With all the growing pains and new beginnings, I find it difficult to sort this all out in my life. I feel like taking a break from love for a while, indefinitely, as I had planned to do in the past until Arizona cowboy came on riding in on his wind horse.
Wind Horse happens to know about my MS as I mentioned in January, when I first met him. After having spent the last several years learning to accept a life of “party of one,” in order to avoid the familiar sting of cupid’s arrow, the time has come. Spring has sprung, or should I say, is at bay and ready to show its bright new greens and yellows. Love is a budding new emotion which has never brought me more than hard earned advanced degrees in the “school of hard knocks.” I enter upon this new season of my life with experience, wisdom, and a handful of fear. My heart is scarred, toughened, yet gentle and very red, pumping gallons of passion a day. Seasons wait for no one and I’m no different. I am going to shed that winter coat, those layers of protection and hope that my “Wind Horse” will provide the clement weather for my love to flourish.
