Through the Eyes of a Child

I know a lot of people worry about telling their children about MS once they are diagnosed. Common thoughts of "how much will they understand?" "will they be scared?" "can they handle it?" and other frightening things run through their minds. I remember when I went through that. My kids were 9 and 7. My husband and I sat down with them and told them we had to discuss something important. Very serious family meeting if you can imagine. I took a deep breath and told them the doctor said I have a disease called multiple sclerosis, MS for short. I explained that it affects many parts of the body and I could have trouble walking and one day be in a wheelchair. They sat there looking at me with equally serious looks on their faces. When I was done with everything I knew that I thought they should know, my older son asked "are you going to die?" I calmly said "not from this, no" and got ready to explain that everyone dies but that this disease could do a lot of things but wouldn't actually kill me. However, I didn't get the chance...all he said after hearing "not from this, no" was "oh, okay" and he walked away to play, coaxing his younger brother along with him.
     So that was my first slap to reality. He's right. If it isn't going to mean I'll die from it, then it can't be that bad, right? As they say...from the mouths of babes.

Handicapped vs. Crippled

Before the days of political correctness, physically handicapped people were referred to as cripples. As we became more PC, most people stopped using the term, understanding that it was offensive. However, there are still some people who insensitively use terms like “crip tick,” “crippled tag,” or other similar offensive nicknames for the handicapped placard for parking. It is possible that these people really don’t understand why this is offensive, so let me take a minute to explain.

            Even though the dictionary might say that cripple refers to not having the use of limbs, it has a much deeper connotation to it. When someone is crippled, they are completely incapacitated. When a trauma or situation is crippling, it leaves you incapable of doing anything at all. So, to call someone who is handicapped a “cripple,” you are basically saying that they can’t do anything at all. We all know that this is the furthest thing from the truth. Just look at the one-armed pitcher, the man who uses his feet to control his computer to do his high-level engineering, and other amazing individuals.

            I feel that this is the type of thinking that keeps people from getting the placard, bars for the bathroom, a cane, or other assistive devices. I know it took me a long time to admit that I needed these things to be able to live my life as I want. What I learned though is that admitting that I have a handicap is actually empowering. Since I think of the word “crippled” as meaning completely incapacitated, I would not consider myself crippled unless I was in a coma. Handicapped, however, just means that I need a little help with certain things. If I park closer to the door, it’s easier for me to get around inside; if I use the bar in the shower, I feel more secure and won’t be risking a fall when I feel dizzy from closing my eyes; and if I use my cane, there is less chance of tripping over the invisible hazards on the sidewalk. Without all those risks, I can get on with my life. So, my advice to people is to not let MS cripple you—take charge, become empowered, and make use of any handicap accommodations you need to live a normal, fulfilling life.

Who Am I?

Everyone finds and defines self worth at different times and in different areas of life. Many times, a person's self worth changes ax they enter different phases of life. The hardest thing to do though is defining your self worth when a change came through no choice of your own. When the worth of a person is redefined for him or her, it may not be easy for that person to see what it is, but I assure you, it is there.

     After trying on different "hats," I found in my thirties that I was a career woman. I was very good at bringing technology into publishing and helping bridge the gap between editorial and tech people. I thrived on change, loved the work involved, and never minded thinking about work 24/7. Working vacations were okay, and I was able to fit family in without a problem. That's who I was, that was my contribution to the world. Even after the tumor and MS diagnosis, I was able to bounce back and deal with the symptoms without it affecting my work.

     Unfortunately, a career very often becomes very high pressured and stressful as it leads to more responsibilities—and we all know that stress and MS make for poor bedfellows. Eventually, and without my notice, cognitive MS symptoms started to appear. As the stress got more intense, I became less effective in my career. When I finally came to the point of being laid off from the job I had, I was a different person. I am blessed with a friend and mentor who saved me from being unemployed and even had a job open that would have saved my career entirely, that is it would have if I hadn’t become this other person of course.

     The new me was unable to convince the upper management that I was right for that job and therefore had to wait and settle for a much lower position that was to become just a job, my career a distant memory. Knowing I disappointed my friend, I tried to pick myself up and bring my old self into the new job, but that old me was too far out of my reach to be of much use or have the proper effect that was needed. So, saying goodbye for good to the old me, I tried my best in the job and started the search for what the new career was to be. I was still under the impression that the new me was just a new version of the old me. I thought my self worth was too tied to a career for there to be worth in not having one. It has taken me a number of years to fully mourn the career woman and accept that my job is no longer part of my importance to the world. It took a couple more years to get beyond the mourning and understand that I still have something to give to this world. I don’t pretend to understand fully what it is; I mean can anyone really understand the impact they have on others or on the universe? I just do what feels right and have begun to go back to things I have enjoyed in the past.

     Writing is something that has been part of me since I was very young, so I am hoping to touch people’s lives with it. I know now that its okay to transition into a different me without losing any of my true self. Whatever the past me or the current me has to offer, there has always been and always will be my core self that is worthy of nurturing to the fullest possibilities.