A woman I work with recently asked me to write "my story" to help promote an upcoming Mindfulness series that I am offering. It has been a long time since I have written anything and I felt excited at the prospect of putting something down on paper again. I submitted a rather lengthly piece and was then asked if I could condense my four pages into one page. I revised the article but found myself still wanting to share the longer version. I recently watched film maker Matt Embry's documentary Living Proof and find myself wanting to also share some of the thoughts that got stirred up for me as I listened to his story of living with MS. So I am sharing the unedited lengthy version with you here and now.
I was first introduced to Mindfulness sixteen years ago when I was diagnosed with Multiple Sclerosis. At that time, I had lost the vision in my right eye, was having debilitating anxiety, experiencing panic attacks for the first time in my life, and I was terrified about what this diagnosis would mean for my future. This is a bit of my story about how I lost my vision in order to be able to finally see. It is a story about how something as simple as getting up thirty minutes before my children every morning to meditate changed my life in the most profound ways. It is a story of how to this day, my meditation practice is something that sustains me when all else falls away.
It was the day after Christmas in 2003 when I woke up with a terrible headache and a searing pain in my eye sockets. My husband assured me that it was just an optical migraine and that it was nothing to worry about. Within a few hours, the world was becoming increasingly blurry and the pain was excruciating. It was the day after Christmas and I was unable to find an eye doctor working and so I went to a walk in medical clinic, where I was told that I had a sinus infection. I was no doctor but this just didn’t make sense to me. I was loosing my vision, I was not congested. A few hours later, I had lost almost all of the vision in my right eye. I was scared. I didn’t know what was happening but I knew that something was very wrong. I called the emergency room asking if it was safe for me to go to sleep. I remember worrying that perhaps I was having a stroke. They informed me that I should be seen my an ophthalmologist and that even if I came into the ER, they would not have the necessary equipment to assess what was going on. I woke up the next morning with no vision in my right eye not sure what to do since it was now a holiday weekend. I was very fortunate that our neighbor, an ophthalmologist who had just returned home from his holiday vacation, graciously opened up his office to see me. It was not long before he informed me that I had a serious case of optic neuritis, an inflammation of the optic nerve. Within hours I was having a host of tests and scans as doctors tried to determine the cause of this sudden loss of vision. I was prescribed a 5 day course of IV steroids to help avoid permanent damage to the optic nerve.
Several days later, I was in a neurologist’s office being shown the scans of my brain and being told that the lesions present were indicative of Multiple Sclerosis. I remember catching my breath and saying to the doctor that I needed a moment. I just needed to digest what he was telling me and I just needed to be with this news for a moment. Without giving me that moment, he went on to say: “This is devastating news. This condition will likely debilitate you. You should be devastated. You will likely be in a wheelchair within ten years”. I was horrified. What kind of doctor says this to a patient just moments after giving them news of a chronic health condition? How dare he rob me of my hope. Where was his compassion? I grabbed my scans and walked out of that office telling my husband that we would find a different neurologist.
Once home, I needed to be alone so I went into the shower. As I stood under the warm water, tears streaming down in a silent roar, I kept hearing the doctor’s voice saying to me, “you should be devastated” but instead, I began to feel a strange sense of peace. I felt this other still small voice from deep within saying: “This is not happening to debilitate you or to punish you. This is a gift and it is going to teach you what you need to learn about yourself. You have lost your vision so that you can see.” I wan't quite sure why but I was OK because the real truth was that in that very moment, I really was OK. I didn't know what my future held but in that moment I was OK.
In the days and weeks that followed, fear returned. My vision was not coming back as I had hoped it would given the treatment I had undergone. The more I researched MS, the more I began to worry about what all of this was going to mean for me and my family. I started having crippling anxiety and was experiencing panic attacks for the first time in my life. As I was trying to learn more about this condition, the one thing that kept getting my attention was the talk about how stress could aggravate MS. There seemed to be so much talk about the importance of managing stress and taking care of oneself with diet, exercise and rest. I decided that I needed to find a way to better manage the stress I was experiencing so that my body could begin to heal. I began reading Jon Kabat-Zinn’s book Full Catastrophe Living. In this book, he outlines the findings of his 8-week Mindfulness Based Stress Reduction program used to treat people with chronic pain, heart conditions, and cancer. I was fascinated and it all made complete sense to me. I could wrap my head around the science of his findings and I knew that this was something that I needed to learn more about. I enrolled in this 8-week MBSR course and quite simply, it changed my life.
I was amazed because all that I was doing differently was getting up 30 minutes before my daughters to meditate each day and yet my life was changing in the most profound ways. The course asked that we commit to meditating 30 minutes every day for the 8 weeks and because I was very much a perfectionist at that time, if I said that I was going to meditate every day for 8 weeks, then I was going to meditate every day. I was also highly motivated because I still did not have my vision back and I was still having fairly debilitating panic attacks all while trying to take care of two small children. I was desperate for some relief and so whether I felt like it or not, I got up each morning and meditated. To this day, I think that has been one of the greatest gifts that I gave to myself during that challenging time.
Prior to the course starting, every time that I walked past the microwave, I would stop to close my “good eye” and see if I could tell what time it was with my “challenging eye”. Each time that I stopped to look at the clock, all I could make out was a blur of glowing lights. I would feel anxious every time I walked past the clock worrying that my vision might never return. It was not so much that I could not tell what time it was that was so upsetting but it was where my mind would take me into the future that caused me so much distress. I don't even think it was so much the fear about my vision because with my one functioning eye, I could still see. I think it was more the fear of what else might happen in the future? What if this happened again in my other eye leaving me blind? Those were the scary places that I would go to.
After the first week of the course, I noticed that I was not stopping by the clock as often. I might think about it as I walked by but the urge to have to test my eye every time I passed was less. With each week that passed, I was checking the clock less and when I did check, I noticed that I was not as bothered when I could not tell the time. It was more that I was able to just notice that I could not see the time, as an observable event, and then I could let it go. Eventually I stopped checking the clock and I stopped worrying so much about when my vision was going to return. Instead I was becoming increasingly able to just appreciate all that was right with my body and all that was beautiful in my life. Instead of looking at what I had lost, I was suddenly looking at all that was right before me. I started to feel so profoundly grateful. I started to feel such incredible joy from the smallest of things. I could savor the joy of snuggling up with my children in ways that I had not fully appreciate before. The panic attacks lessened and I stopped fearing them because I started to have confidence that I would be able to manage them if they occurred. I started to really believe that I was going to be OK no matter the condition of my body. I was beginning to be present in my life, able to accept myself exactly as I was, and able to bring myself back to this place of peace and acceptance any time that I would slip into worrying about my future. It was as if I was waking up to my life. That was when it dawned on me what a gift this condition could be. The irony was not lost on me that I literally needed to loose my eyesight in order to see what really mattered - that all any of us has is this present moment so why not be fully present for each of our moments no matter what might be going on in our lives. It was at this time that MS began to stand for MySelf to me instead of Multiple Sclerosis because I was able to appreciate how MS could be my greatest teacher if I allowed it to be.
When the eight weeks were done and the course was complete, I remember feeling afraid. It was as if I had been given this amazing gift but I was afraid that I would loose it now that the structure of the program was over. When the teacher offered me the opportunity to retake the course at no charge if I worked as her assistant, I jumped at the opportunity. I accepted her generous offer and did so several other times. The beauty was not just in how my own meditation practice was becoming solidified as a part of my daily life but also how I got to bear witness to how it was changing the lives of every one who participated. I knew with all certainty that this was something real that worked. I was literally rewiring my brain to learn how to be in the present and how to respond to the stress in my life in a healthy way rather than just reacting to it with my old habitual patterns. Once we learn, we can not unlearn and so there was no going back for me. This was my new way of life.
Jon Kabat-ZInn was quoted as saying, “this practice is simple but not at all easy” and how true this is. It seems so simple, to just sit and do nothing but to actually sit with yourself, your thoughts, your feelings, and sensations in your body without judging yourself and without doing anything at all about any of it, is one of the hardest things to do. To switch from our normal mode of constantly doing to a mode of simply being can be very difficult. Like any new activity we are trying to learn, we must practice if we are going to improve. This is a practice that requires a deep commitment. It is a practice that we must be consistent with and also one that we must have a tremendous amount of self compassion for. It is a practice we must do whether we feel like it or not and we must expect that there will be many times that we do not want to practice. It is a practice that can sustain us when all else falls away. It is a practice that has helped me to make peace with the reality that my health may always be a challenge and that is really OK. It is a practice that has helped me to choose to respond to my life from a place of gratitude and acceptance no matter what chaos, storms or crisis might be going on around me.
As I continued to experience so many life altering benefits from my own daily meditation practice, I began wanting to share what I was learning with others so that they too could experience some of the same benefits. It started by just talking with friends about it on walks and having small gatherings where we would meditate together. Friends would tell friends and people would ask me to help them learn to meditate. When I saw how much I was enjoying sharing my passion for Mindfulness with others, I decided to go back to school to become a certified life coach so that I might teach others what I needed to continue learning and practicing in my own life.
Fast forward to present, I have been living with this unpredictable condition for 16 years now. I have had periods of relapse and periods of remission. I have gone on and off different disease modifying drugs. I have gone on and off different MS diets. I have worked with naturopaths, MDs, massage therapists, reiki practitioners, acupuncturist, physical therapist, counselors and so much more. I have felt frustrated and confused by conflicting information over the years. Through it all, the one thing that I have consistently done as part of my self care that I feel has benefitted me the most has been my daily meditation practice. My meditation practice has helped me learn to focus on the present moment, to not worry about the future, and to be grateful for all aspects of my life. It has helped me to allow MS to be my greatest teacher. It has allowed me to not live in fear of what this disease may or may not do to me. It has taught me that is is not only OK but necessary to say No sometimes, that it is OK to disappoint others to be true to myself, that I can’t please everyone and that not everyone will understand, that I am so much more than this body I inhabit, that it is OK to ask for help, that I can do very hard things and that I do not have to do them alone.
In a world where there is so much pressure to be constantly doing, accomplishing, creating, and producing, we often forget how to simply be. We forget how to be still. It is in the stillness that we can connect to who we really are. It is in this stillness that we are able to access our own inner wisdom to know what is best for ourselves. I would not be honest if I did not admit that I still struggle with all of the conflicting information out there on MS. Neurologist and the MS societies use fear to motivate people to take one of the disease modifying drugs. Others out there use similar fear tactics as a way of promoting very strict diets as the way to stop the progression of the disease. It can be overwhelming to know what to do.
As I sat listening to Matt Embry "uncovering the crippling politics of treating multiple sclerosis" and sharing his story of living with MS, I had mixed reactions. As he spoke on his absolute certainty that diet is the way to stop the progression of this disease and his absolute certainty that none of the disease modifying drugs out there are of any benefit, I found myself getting angry. For years I was the product of my last conversation. If my neurologist talked to me about the dangers of not being on a drug, I usually chose to go on a drug. If a naturopath spoke to me about the dangers of the drugs and the power of the special diet, I threw out my needles and started eating massive amount of kale. I rode this roller coaster for years never really trusting that I knew what was best for myself. Throughout the documentary, it seemed to me that Matt Embry is living his life empowered but also quite afraid. In my opinion, he seems to be searching for guarantees and proof that what he is doing is going to keep him from becoming disabled. I do not think such guarantees exist. He made a lot of compelling points and I was deeply touched by parts of his film but I also found myself appreciating how I have lived most of these past 16 years not in fear of what the future may hold. It was not any of the drugs or diets that allowed me to live with this sense of peace in not knowing, but rather it was my daily meditation practice that allowed me to continue brining myself into the present moment where no matter what was going on in my mind or body, I was OK. I have tried it all and as I have said, I have had periods of remission and periods of relapse on and off the drugs and on and off the diets. The truth is that I do not have the answers and I do not believe such absolute answers even exist. I believe that what works well for one person, may not work for another and I have come to realize that I am not comfortable with those people who claim they know with all certainty what is best for another. I do not doubt that those who advocate that diet alone can change the course of the disease believe this to be true for themselves. I also do not doubt that those who choose to go on a disease modifying drug believe that they are making the best choice possible for themselves. I do question anyone out there who claims to know what the answer is for another person. For example,if you are someone who has struggled with an eating disorder most of your life, going on a very restrictive diet might not serve you well. If you are terrified of needles and the thought of injecting yourself several times a week is going to cause you an inordinate amount of stress, perhaps choosing to go on a disease modifying drug isn't the best choice for you. My point is that I believe we all must gather as much information as we are able to and then we all must make the choices that are best for ourselves given who we are as human beings. I think that we all need to respect one another and appreciate that none of us really knows what is best for another person.
I have been having a flare up of old and new symptoms this past year that while manageable, have been challenging at times. When I have caught myself franticly searching for some magic answers about what it is I should be doing, I try to pause and breathe. I meditate asking myself, “What do I need? What is best for me? What do I want? What sustains me?” and then I listen. I now trust that I know what is best for me. My truth continues to remain the same as it was all of those years ago and that is that the single healthiest thing I can do for myself is to continue my practice of staying in the present moment. All any of us has, is this moment so why not be fully present and enjoy each of our moments no matter what the condition of our minds and bodies. This does not mean that I am always happy about the circumstances in my life, but it does mean that I can be at peace no matter what is going on with my body or in my life. I choose to nourish my body with mostly healthy nutrient dense foods but I also choose to feel free when it comes to food and follow a more intuitive approach to eating. I also choose to continue taking one of the disease modifying drugs that I tolerate with virtually no side effects other than injection site reactions. I also now choose to not let what others are advocating make me feel guilty for making the choices that I feel are right for me today. We are all uniquely different and the reality is that MS presents differently in almost every individual who lives with the disease. So we each may just need to find what the best way to live with the unpredictable condition is for ourselves and let that be OK.
