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Letting the light in: An introduction to life with multiple sclerosis

April 23, 2013

This article was written by Kimberly Bridges, multiple sclerosis patient and advocate.

Multiple Sclerosis is a chronic, degenerative disease that affects the central nervous system, specifically targeting the myelin sheath coating that protects and insulates nerve cells. It causes the body’s immune system to attack healthy nerve cells, which can lead to vision, coordination, balance, movement, and a host of other problems. The course of the disease is highly individual and depends on which nerves are involved. I have been living with this unpredictable disease for at least 10 years. The first real noticeable exacerbation I experienced was the vision in my right eye becoming blurry. It turned out my optic nerve had been attacked. This is a common starting point for many people with MS. I had to go on IV steroids for four days to combat the inflammation. MS attacks leave scarring where there has been damage, thus the term sclerosis.That means that a person can always have symptoms or issues from that area depending on many factors including exposure to heat, infections, and fatigue.

I am not writing this as a medical paper on MS though. I guess you could call this my coming out party. Although quite a few people in my life know that I have MS, there are still many that I have not shared it with mainly because I don’t want people to feel that I am flawed somehow. I also don’t want pity, or for my MS to be the "elephant in the room." There is no reason to have pity or for it to be an uncomfortable topic of discussion. It’s not who I am. It’s just something I have to deal with in this lifetime. MS has been an enormous challenge in my life, but it has also expanded my compassion for others, and for myself. I have had to learn so much more about health and wellness. Living a great life with MS is possible, but it means living within certain boundaries and really paying attention to what your body is communicating. Balance, good nutrition, and proper self-care are paramount. This is my way to open up and admit that I have MS and as an account of what living with a chronic disease is like. I want to give other people who are suffering in silence the courage and confidence to break free and invite the light in to help heal. Healing doesn’t happen in isolation.

In many cases, MS is a silent disease, so people think you must be fine because they can’t see any visible symptoms. MS tends to follow a course of a flare up and then remission, although it doesn’t mean the person won’t have ongoing issues like fatigue and altered sensations. That is how my MS manifests right now. I find that it is a double-edged sword. It’s good that I’m not disabled or look unhealthy, but it’s also frustrating because many times I just don’t feel good and am very fatigued. Sometimes I have tingling sensations and my legs feel weak. Since my symptoms aren’t visible, people don’t understand why I want to wait for a close parking space to open up or why I need to cancel plans because I just need to take a nap and rest. I can say that I am never 100 percent fine; just by knowing that I have an unpredictable lifelong disease can be overwhelming at times. However, I truly feel blessed that my disease has not progressed at a rapid rate and that treatments do exist.

What I have found after all these years of keeping silent about MS is that in my silence is my shame. Not sharing it is due to fear, pure and simple. I am afraid that people will not accept me, employers will see me as a weak link, people might decide it’s just too heavy to deal with and run, and the biggest fear of all is that no one will ever love me again, because I am less than perfect.

When I was first diagnosed, I worked in pharmaceutical sales. I had only been with my company for a little over a year, but I was making an impact and on the way to being very successful. Nothing was going to hinder my progress. I decided to work even harder. I think I wanted to prove that I was still capable, more than capable actually. I set out to see more doctors, open more new offices, and sell my heart out. I would often skip lunch in my quest to build my territory, work long hours of driving, getting in and out of the car in all kinds of inclement weather, wearing myself very thin. Extremes in temperature have a big impact on MS. Heat causes nerve impulses to slow so anywhere there is damage, nerve conduction is already limited and symptoms can flare. In the summer, I am much more tired and have more issues. I hadn’t learned the consequences of living that type of lifestyle with MS.

Having a chronic disease causes people to go through so many stages. I don’t believe these stages follow a certain path or are on any particular timetable. I have gone through many waves of denial, grief, defiance, strength, depression, repression, acceptance, and hate. At one point, after about six years of living with MS, I was very sad and told my husband that I thought I was going through my grief stage. He disagreed and said, “grief happens earlier on.” That was such an awakening for me. I realized I had been taught about the stages of grief when I was a psychology major and had been under the same impression. Since you tend to think of stages as time-dependent, linear, set parameters, you think they follow a natural course. Now that I have been going through them, I can say with absolute resolution that they don’t. Just when I think I’ve totally accepted the fact that I have this disease and I’m strong, making statements like, “I have MS, but MS doesn’t have me," the next day I am a puddle on the floor weeping for what I have lost and what I have to live with for the rest of my life. Then it vacillates again and I think, “I don’t really have MS. I don’t need medication.” There is no set time period for when these feelings occur. They just do, because it is hard and scary and unknown.

My hope is that we can all be more compassionate and understanding in the face of what is uncomfortable. I choose to believe that all that exists in our world does so to move us closer to the love and light that we are here to have and know. What better gift is there than to love someone, really love them, even when they feel unworthy? The hard times are our gifts, for they allow us to really give love and to feel love on such a deep level. The even more magnificent love is cherishing your own being through all of the good, bad, ugly, and indifferent. There will always be people that don’t stick around or say unkind things, or that don’t have the capacity yet to love in the face of what is challenging. I no longer want to be hurt by those actions. That is their sadness, and I feel that because I believe they are missing out on the biggest gift. MS has given me that gift and many more, but I must be okay with sharing that part of myself if I am truly to increase my bounty of goodness from it being a part of me. I am not defined by this disease unless I choose to be. In pushing it away and keeping it from others, I feel that I have it given it more power than it deserves. I have allowed it to make me feel unworthy, unlovable. Unconsciously, I’ve also kept the opportunity from my fellow human beings to learn, grow, love, and expand their hearts and minds. I’ve decided to be candid and honest so that those moments can now happen.

Several incidents have occurred in the years since my diagnosis that solidify the reason I have had fear regarding this admission and I’d like to share these as examples. My stepfather is in a nursing home and I was visiting recently when my mother was there. She pointed out a woman that was in a wheelchair. She then said, “She has MS.” I inquired if that was the only disease she had or was there a combination? She said, “No. Just MS. That’s what happens when you don’t take your medication.” Wow. That was a heavy blow. MS is a tricky disease and the treatment options all come with risky and unpleasant side effects. I, like many others, have gone through periods of being consistent with medication and waning when the side effects or painful injections become too much. Another incident occurred when my mother-in-law stopped by one day and we were chatting about various topics. She mentioned that when I first started having MS-related symptoms, her stepson and I were not yet married. Someone said to her, “Well, at least they’re not married. He can still get out.” Ouch. There it is again...the shining example that I am not lovable or worthy; I have MS and that is the sum of who I am now. Not to mention that people could or should leave in the face of a chronic illness. A friend of mine told me that I needed to figure out the reason I chose to have MS because I would never get better until I “worked it out.” Another enlightened friend told me that my MS would be cured once I became more spiritually aware and worked on myself more. Huh. So, it’s my fault and it is a test. If I fail, then I’ll be stuck with MS and be punished. That sounds pretty enlightened to me.

Within our suffering, there is truth. It lies in seeing the light, love and beauty inside ourselves and one another. It is a process. It is easy to gravitate towards what is beautiful, smart, and good in what society deems to be. True growth comes from helping what is ugly, submissive, lacking, scared, and sick to feel lovable, confident, exposed, bountiful, and beautiful. In opening up to that experience, we become those things too. There is no better feeling or experience in the world than to love, to give, to be present. These are the moments we feel most alive.

I hope that those of you who are living with an illness will be kinder to yourself and release any shame or unworthiness that you are feeling and allow the light and love that is readily available to envelope you. I also hope that others will not be quick to judge someone who is suffering with a disease and will open to the opportunity to give love and be of service.

There is a lesson in diseases such as MS, and it really is a beautiful gift.

Have a question for Kimberly? Ask it here!