I am in most cases an intensely private person. In fact it takes a while and a good degree of trust before I share intimate details of my life with another. I have no problem talking about superficial things, what I ate for dinner, a movie I have seen or my new exercise plan. I do not consider these things intimate and can make polite conversation with others as needed. It will take much more from an interested party to find out what my true thoughts and opinions are; I hold them closer to my chest. It will also take some time to begin to understand my world and the things the matter deeply to me. Those that love me see me completely for who I am.
“A best friend is the only one that walks into your life when the world has walked out.”
One of the things that I have held closely in the past few years is my illness. I have Multiple Sclerosis. Just writing it is difficult because I do not believe in labels or illness as a definition of a person. It is never the first thing on my mind and I do not picture myself as “sick”. I have had to share this diagnosis with some at work due to scheduling issues with treatments and can say that most of the time I have felt conflicted about doing so. My neurologist calls me “high functioning” in that I do not wear my disease on my sleeve. One would have to look very closely at me to see any obvious symptoms. This can be both a good thing and a bad thing.
“Worry is itself an illness, since worry is an accusation against Divine Wisdom, a criticism of Divine Mercy.”
First the good. As a former dancer I have exceptional balance and good muscle condition. This has been helpful in hiding otherwise challenging symptoms. I am able to go to the gym each morning and consider it one of the most important things that I do for myself in order to maintain physical strength. I would venture to say that I am in better shape than most and I work very hard at this. I love to hike and I am just not willing to give that up. A relapse last year included moments of disequilibrium that I was able to hide from most of my colleagues. Sure the room would spin for a moment, but with my good balance people were none the wiser.
Now for the bad. Because I do not look sick, people do not understand when I need to sleep nine hours a night, eat a restricted diet and manage my stress. It appears as if I am uptight or unwilling to be flexible. As one that would never use my illness as an excuse, I rarely correct others when they hold these opinions. MS is nothing different than diabetes, depression, high blood pressure or any other chronic condition. It is never what defines me but rather just another part of who I am. When I am feeling great I sometimes even forget that I have it.
Why write this now? Illness is usually something that people hide from others, afraid of judgment or rejection. I guess I have gotten tired of the charade and am confident that others feel the same about their personal challenges. It is exhausting to have this element in my life and feel as if I must hide it from everyone to keep my job or find love. I know that I am so much more than this body and am thankful for the opportunity to learn through illness. Before I was diagnosed, I admit that I was far more judgmental than I am now. If someone was sick, I wondered what he or she did “wrong” to become that way. If someone was depressed, I wondered why he or she could not be free of the darkness. I prided myself in doing everything right. I exercised, ate healthfully and took care of myself. I was the consummate perfectionist. It was not until I went through severe emotional stress during my divorce that my diagnosis was initially made. Unbelievably, I had been living with MS for a decade according to brain scans and never even knew.
“Become slower in your journey through life. Practice yoga and meditation if you suffer from ‘hurry sickness.’ Become more introspective by visiting quiet places such as churches, museums, mountains and lakes. Give yourself permission to read at least one novel a month for pleasure.”
What have I learned from this experience so far?
I have learned not to assume anything in regards to others lives. They may wear a happy face, but underneath be in chronic pain, carry deep sadness or be in severe distress. Everyone and I mean everyone is fighting a battle in some way. People are so nuanced and complex. It is absolutely a disservice to others to pretend I understand what they may be struggling with on a daily basis.
I have learned that some will walk away, unable to see me suffer. It makes people uncomfortable and I can see why. It has taken a few years for me to feel at ease with this. I understand that the right person will see me and not this disease. I do not hold back in my life and have so much to offer. I am loving, hardworking and fun. I embrace and appreciate life so much more than I did in the past. I am absolutely worthy of love.
I have learned greater empathy. Going to visit my doctor is the most difficult thing for me in that I see others not as fortunate as I that have more severe forms of this awful disease. I have found this to be an incredible opportunity to show kindness and compassion for those in much greater need and feel lucky to be able to give in this way.
I have learned patience with myself and with others. If I am not feeling well I have to be patient with this body I have been given. That could mean a shorter gym session, resting on the couch after work, or saying no when all I want to do is say yes. At the same time I have learned to be patient with others when my limitations frustrate them. I am blessed with a beautiful family that just knows when I have reached my limit. They say they can see it on my face when I “hit the wall” and encourage me to rest.
I have learned to relax more. Seems strange but for this hard working German girl with Minnesota farming blood, I pride myself in working hard and I mean hard. I don’t think I truly knew how to just sit and relax until my diagnosis. I have found joy in doing a puzzle, reading a book, watching a movie or just being with those that I love without the constant pull of multi tasking. It has been freeing on so many levels, a reason to stop and just be.
I have learned to forgive. I have forgiven those who were careless with my heart, those that I believe progressed my illness by stressing my system to its very limits. I have also forgiven myself. It is all too easy to blame oneself for autoimmune illnesses and disease. Why me? What could I have done differently? It is a dangerous road to travel and one that I have come to peace with.
“We are not victims of aging, sickness and death. These are part of scenery, not the seer, who is immune to any form of change. This seer is the spirit, the expression of eternal being.”
Finally, I have learned not to set limits on myself. I am a mother, daughter, friend and coworker. I have endless possibilities in front of me and welcome new challenges. One of my favorite humans in the world is my neurologist, she is my Yoda. When I was diagnosed, she made sure to tone down my fatalist perspective by reminding me that people live with this illness and are quite productive. They fall in love; have families, meaningful careers and wonderful fulfilling lives. She gave me strength when I could not find it myself. My wish for those reading and struggling with something is that you know you are not alone. You have a legion of others with you on this journey, lending you strength when you need it most. Live your life joyfully, smile at the sun and breathe in the fall air. Your life is beautiful simply because you are here. The circumstance is of no importance. From one soul to another my wish is that you live with an open heart and welcome each day with a smile. I do and am forever grateful for illness as my teacher.