When I first got my scooter from the MDA after I was diagnosed with Central Core Disease I was 110lbs. I was often told that I “looked” sick. A year ago I got up to a little over 140lbs. And I started getting told, “Wow, you look great,” or “I can tell something you are doing is really working,” or ” You’ve put on weight finally! You look like you feel so much better.” And I ask this:
WHAT DOES MY WEIGHT HAVE TO DO WITH ANYTHING?
I have recently lost 25lbs. We are back to the, “Oh no, you look so thin, you must not be doing well.” I was doing the same at 145lbs as I am at 115lbs. My weight is no indication of how I am doing in regards to my muscle disease nor does it reflect how I am feeling emotionally. At 145 I was exactly as sick as I am at 115. But somehow my weight gain seemed to warrant comments about my assumed health improvement. My weight loss has warranted comments about my health decline.
WHY DOES ANYONE’S WEIGHT ALTER WITH OTHER’S PERCEPTIONS?
I know my arms look like sticks. I can see them. I don’t need to be told that they do. I am painfully aware of the atrophy that is happening all over my body. When I weighed more, it was just less less noticable. When I first got my scooter I was told so often that I was too young to be in the scooter.
WHAT DOES MY AGE HAVE TO DO WTIH MY DISABILITY?
I have heard the comments towards others while just going through a parking lot. “If he just lost some weight, maybe he wouldn’t need that scooter,” and ” She must have MS poor thing,” and ” Maybe if she just ate more she would gain some weight and not need that scooter.” People talk. Others listen. I listen. I know that the judgments made by others are also made towards me because I have heard them. Sometimes I brush them off. Sometimes they hurt. Sometimes I feel outraged at the unwarranted comments towards a complete stranger.
WHAT DOES WEIGHT HAVE TO DO WITH IT FOR ME?
Weight is a touchy subject for me. I have been on a rollercoaster with weight since my teenage years. Being a professional water skier put a lot of pressure on weight. The actual salary I got was based on my weight. If I was thin then I could be on the top of the pyramid and that paid more. There were no overweight waterskiiers. There were underweight, unhealthy, anorexic waterskiiers. Some of the “big” girls were the foundation of the pyramid. Yes, they were called big. Looking back, they were tall and thin. But we were all labeled and that created very distorted self images for all of us. After the sexual abuse started I found great power in controlling my weight which was a dangerous and slippery slope. My weight was a great point of distress when I was pregnant with my daughter. I eventually stopped looking at the scale as it upset me so much that I was not “perfect.” I feel sad for my pregnant self that didn’t just enjoy and relish in the beautiful body of pregnancy. But ingrained thoughts of thin being perfect were there. I find this ironic now as I am atrophied into thin and thin in all reality equals muscle wasting.
After I was assaulted 11 years ago I was blamed in many ways by the abuser’s family. “If you weren’t so thin,” was one of the biggest reasons. Apparently, because of my weight, a man felt it was okay to assault me. And again I ask:
WHAT DOES WEIGHT HAVE TO DO WITH IT?
Other people caused my weight to fluctuate for a long time. Their comments allowed self doubt, self hate, self worth issues. A few years ago I decided to eat everything that I denied myself from eating most of my life. I gained weight. And apparently that weight gain meant to others, that I was finally getting better. My muscle disease miraculously was healing and Lyme disease treatment must finally be working. None of the above were correct. I was just simply eating more. Then my daughter was put on a specialized nutritional plan due to her health. Since I was cooking it for her, I was eating it myself. I lost 15 lbs right away. Now the next 10lb weight loss DID come from health issues. My labs have been way off due to Iron toxicity, low phosphorus, low zinc, chronic anxiety issues and an increase in PTSD symptoms. But no one actually asks. They assume my muscle disease is just getting worse.
WEIGHT MAKES PEOPLE ASSUME.
So what does weight have to do with it? Sometimes a little, sometimes a lot, sometimes not at all. But that is nobody’s business. Making a comment, an assumption, a judgment, on someone’s weight, are words best left unsaid. Infact, they are words best left unthought. Behind my weight, at any given time, can symbolize hundreds of things, or it can mean nothing at all. My weight is not a reason to ponder or reflect for anyone but me. Commenting on my weight is just a reminder that this vessel for this soul is what most people focus on. No one asks, “How are you feeling?” No one asks, “How is the treatment going, ” and no one ever asks, “How does it feel to be going through all of this?” Nope. I have to pay a therapist to get those questions. Or I come on my blog to find compassion and understanding for virtually every topic that I face or battle or struggle with. But people in my present life, face to face people, rarely ask, and listen, and want to know, how I really am. There are a few and I cherish them. It is difficult sometimes to remember the few when there are SO many of the others. I hear the mumbles, “I wonder what is wrong with her knee,”and “Why is she parking in that disabled spot,”and “Wonder why she needs that scooter,”and “She looks too thin.” And the top of all questions I heard this week was, “Wow, you look much younger than 45, must be because you are so small.” So if I were 10lbs more I would look older? Who on earth knows.
There are so many struggles we each have in our lives. So much happens beneath the surface of our skin and yet our skin is the focus of so much. I challenge everyone to watch their thought processes when they see another person. You know “Everyone is fighting a battle” meme often put up on social media? It’s true. But it is usually just a meme that people scroll past. They don’t internalize it and use it as a step to being more enlightened and more compassionate towards others. But we all should.
MY MIND MATTERS MORE THAN MY WEIGHT.
Where I am emotionally, and mentally, and even spiritually, matters far more than my weight. Or my hair. Or my skin. Or my clothes. Or my make up, or lack there of. The outside of me has been a topic of conversation for as long as I can remember. It has been used to diagnose, to blame, to judge, and to condemn. My body is just that. A body. Sometimes it is an indicator of what is happening on the inside. But most often it is just a vessel for a heart and soul that often gets overlooked because weight, in society, seems to take precedence.