At the age of fifty after recovering from a spinal fusion, I was diagnosed with Charcot-Marie-Tooth Disease, a neuromuscular disease that affects the peripheral nerves.

Shortly after I was fitted for an ankle brace and later four constructive foot and ankle surgeries. As I coped with all the changes, I noticed people began to treat me differently.

Being an independent woman, I didn’t know how to react when loved ones began babying me. It was hard for me to tell them that it made me feel more helpless than ever, but more than once like a toddler I’d say, “I want to do for myself!”

It seemed no one bothered to ask me what I wanted, even though I had no problem with my voice. I began to see I’d have to make some changes or I’d not be able to survive.

First, I decided to simplify my life thinking that would not be so hard. How wrong I was, it actually took me four years. I started by simply saying, “No!”

Because of a lot of pain and a low energy level I decided I needed to choose my friends carefully and let some go that were draining me. After waking up from a nap one day to the sound of someone screaming my name as they walked unexpectedly through my home, I decided from then on to lock the doors before I laid down.

Not only that, I made some changes with my e-mail and phone as well. I only returned the e-mails of close friends, and when I didn’t want to be disturbed I cut the ringer off on my phone and let the caller ID pick up the messages. When I felt rested, I returned my calls.

Another question no one seemed to ask was, “How can I help you?” Instead, they came to their own conclusions as to what I needed which usually was way off base.

For example when I came home from the hospital after my spinal fusion, I had to relearn how to walk again. Not only was it very painful but also difficult. More than once well meaning people would attempt to help me get in or out of a car, and I’d have to say, “No, thanks, I’ve got it!”

I’ll never forget the day I was standing in a crowd when a friend ran up and slapped me on the back saying, “Good to see you!” I almost buckled to my knees in pain.

As I look back, the hardest thing to deal with was getting people to really listen. Often I felt misunderstood. For example, each day I’d go to the grocery store so I could exercise and keep my spirits up. Even though I was having extreme muscle pain, I’d put on my makeup and get dressed up.

Invariably, I’d run into someone who would say, “How are you doing Glenda?” Before I could answer they would always say, “You look good!” On vulnerable days when I let my guard down and began to tell how I really felt I was bombarded with these kind of answers, “You know I have the same thing!”

Sometimes, they would simply change the subject to something trivial making me feel so alone and isolated.

At times like the commercial on TV about cell phones, I wanted to scream “Can you hear me now!” but I didn’t give in to that impulse. It wasn’t long, until I learned which friends I could confide it and which ones I couldn’t. I also found it was beneficial to go to a counselor to help manage my stress level since I had other problems in my life as well to cope with.

I also learned folks were only trying to comfort me but were not sure how to do it. They meant well.

I also found it was my responsibility to ask for what I needed which wasn’t easy either. And it was not easy to learn to say, “I’m sorry, I was having a bad day,” when I was irritable. I am still working on being kind and assertive at the same time.

It’s been five years now, and I’ve come a long way. As I sit typing this in my office filled with personal gifts and belongings that made me feel appreciated, I can look outside my window and see a female cardinal at the feeder.

In the meantime, I have a tape of Beethoven playing in my CD. When I tire of writing, I can sit at the other table and paint with my watercolors of oils. If I need a break I can call one of my caring friends who make me feel appreciated.

No, my problems have not gone away, they will continue to be a challenge, but I’ve created a sanctuary where I can go and rejuvenate my spirit. Yes, I’ve redefined my life. And to my surprise it is simple, peaceful and satisfying. It still amazes me how I was brought to this place in my life, kicking and screaming to find it suits me well.

How many people get to pursue their childhood dreams?

I’ve also learned to be very grateful for my friends and family and to realize they can’t read my mind. It is up to me to say, “I need your help!” And guess what, if they don’t hear me the first time, I’ll keep saying, “Can you hear me now?”

Email us your comments and questions to nathasha@audacitymagazine.com .

We are dismissed because our disability is thought to make us stupid. Do you think it is always us?

This area of dissection, which is readily unspoken about, is most difficult for the largest part to swallow. It is hard to believe, to the average person’s eye; that there indeed are some very capable people out there with disabilities such as myself.

Unfortunately, people find it too dark an area to discuss, or talk about, let alone- cope with! It is all too easy to put on our rose colored glasses and hide with a false comfort.

In general, people and the world around us would rather ignore the matter at hand. They would rather turn away from the neediness and the desperateness that over-shadows disabled people’s true being. They would rather continue to believe the myths, and regard us as the “cute, innocent, naive children” forever living in this forgotten bubble, who have no desires at all!

This morose and morbid fascination with our capabilities, or to be more specific, our incapabilities in the romantic arena or lack there of is ignored.

The fact that we may wish, or think of having an ordinary, healthy, friendship, or even a romantic relationship with another consenting, loving, caring, human being; much less get married, is just too disgusting, too revolting, and too sickening.

It is too extreme, too challenging, and too confrontational. Moreover, it is very provocative and shocking to others and the norm.

For pretty much my entire life, I unyieldingly struggled with every bated breath I have taken. Not only was it for my own core essence and being to exist, but, it was in my chosen passion, which was of the arts.

It was the desire to be able to express myself freely in a world of dance, music, and literature; which helped me to relinquish and release the bars that I wore on my leg and in my brain– also, because I did not want to be looked down upon as a typical helpless victim.

Thus, I did everything in my power to strive and thrive- I had wants, needs, and desires, and I wanted to be given the same equality and chance to express myself in the areas I loved and cherished most.

I reasoned that if other men and women of my age and generation could accomplish their goals and dreams- including having a boyfriend, then why couldn’t I?

I could easily work on my inner-self- my strengths and weaknesses, to become the best person I could be. I felt that that was the healthiest way to approach my life.

However, too often, others were quick to judge! Consequently, time and time again I was put to the test- only to search my soul, readjust my thoughts, and daily re-committed myself to living that healthy “normal life,” in a society, which continued to tell me “I couldn’t!”

My self-worth came from the gentle, romantic way in which I cared for myself. It was the way that I dressed, the time that I took to primp and fuss, and the way I took that extra moment to look the very best that I could for each given situation.

It was the way that I nourished my body, my mind, and the way I acted. It was the honest and pro-active, empowering way I conducted myself. It was the way I looked up to those eloquent people who were positive, happy and joyfully succeeding in life.

I took the good, positive; things I liked, and let go of all the rest; as I continued to develop a sense of my own inner-being. I began to see how others were attracted to me.

They began to look beyond my left side hemiplegia, Cerebral Palsy, and learning disability. They began to see me for me. Thus, I embraced myself and my life even more than I already had. My romantic sense came from all this innate wisdom, insight, willingness to change, and the knowledge I read.

Yes, I have been challenged, ridiculed, stood up on dates, however, disputed all the intense examinations, cruel remarks, I have risen despite the harshest of scutinization.

I have found a man who loves me for me, and I have happily been married, for twenty years now. Despite my physical challenges I was able to find a love, a partner, and a life of my own, despite what the world thought of me.

Comments or questions, nathasha@audacitymagazine.com

Society’s attitudes towards the disabled on that subject have some changing to do still I am afraid. I myself am an adjunct history professor, working on a doctoral degree. This degree is the only possible way for me, to be financially independent.

In my own case, some, not all of the people within the disability establishment, whom you would think would be cheering me on, and providing what help they could, during the process, are instead getting in the way. I have a master’s degree, and I have been offered employment in a sheltered workshop!

The law is in our side, with regard to accommodations, but trying to enforce it is a pain in the neck. For example, a very dear friend of mine has spent half a century, fighting to earn a living, with limited success because she will not surrender herself to the experts’ definition of what she ought to be doing in all parts of life.

Without this degree, all my talents and time have gone to waste, and I needn’t have bothered to educate myself. I have spent six years, and $85000 on this process.

I am on the way to South Africa next month, for a research trip for the degree. Some of you will remember my trip to Australia, I wrote on last June. Some of the people within the university are very helpful, others suffer from the wrong concept that I don’t need or want this degree because “the state will take care of me”!

The requirements keep changing because they assume that like an overprotective parent, someone else will take responsibility for my life and I don’t belong in the working, bill paying, and striving world with non-disabled people.

What a false and insulting idea, my friends!

All of you may have different goals, different abilities, different needs, but you wouldn’t be reading this magazine, and perusing what ever you are trying to accomplish, if you didn’t reject this outmoded idea. We as a community have endured things in our own way that the average person can barely imagine, let alone deal with.

There is nothing wrong with getting the help we need, but it is up to us, to determine the level, and manner of such aid as we do receive, to make possible what we want to accomplish in our lives We know what we wish to do, better than even our loved ones, let alone, some doctor, therapist, counselor, or secular high priest, who takes their word to be law.

The system should, try to help people make their own goals possible, rather than present a preset set of options, and tell us “take it or leave it”.

Either we must live as though there is nothing wrong with us, taking nothing from anybody, like inhabitants of “Galt’s Gulch”, or we must surrender control of our lives to an army of experts, who will channel us, into options, designed fifty years ago, when there weren’t the range of programs and possibilities we have now.

More than anything else, we as a group must fight, spiritually, mentally and physically against these limiting ideas, which hold us back, keep us in a mental closet, separated from the rest of the world in comfortable isolation. Having to waste our energy, for all eternity fighting for our rightful desires.

All of you know this: Things aren’t what they once were. But I truly believe that there is progress to be made on many fronts. What do you think, my dear friends? What will it take for all of us to be heard? It’s our collective goal to create and nurture a better society where we can be valued as equals.

I think, we can do what Crisis did, in the pre civil rights years, to break down outmoded thinking and celebrate the heroic achievements of the men and women in our community.

So, here’s where we stand now. Where will we stand tomorrow?

Questions or comments?
Email us at nathasha@audacitymagazine.com .

Since I lived only 4 hours away from our nation’s capital, my parents were able to drive me there. I was so excited about going and counting down the days till Friday, when I would arrive. I was going to share a room with Nathasha, Claudia, and Tess. I’d talked to them online and couldn’t wait to meet them in person.

I slept in the car most of the way

there and when I pulled up to the front of the hotel, I started getting nervous. I wanted to fit in with my roommates and the rest of the O.I. conference veterans. As we walked up to the registration desk, I was astounded by the amount of O.I. people in the lobby. I have never seen so many people with my condition in one place at one time!

My roommates were so welcoming and hilarious with their jokes and witty comments. I knew that we were all going to get along very well. One of them mentioned on the spur of the moment that we should take the metro (subway) to go sightseeing around Washington D.C.

The last time I took a train I was still in a stroller and could hardly remember the experience. It was so exhilarating to be traveling around in a subway and not a car or bus for a change.

In our group of six, we traveled to the White House and the Smithsonian Museum. It was scorching hot outside but we had so many laughs on the way there. As Nathasha Alvarez said at one point, “We’re divas we don’t sweat, we glow.” I was glowing a lot that day let me tell you, but it was one of those memories that I’ll always cherish. I was glad to have gotten to know other people with OI better, while enjoying the beautiful landmarks around Washington D.C.

We headed to the hotel bar later that night and I felt like all four of us were the O.I. version of “Sex in the City.” We were going to order a round of Cosmopolitans for everyone but decided to go with Mojitos, Melon Breezes and other delicious drinks that should have make our own version that much tastier!

I have tons of girlfriends back home but it was awesome to connect on another level with girls who have been through very similar experiences as me. We had a blast that night drinking, eating, talking to other friends around us. It was the first time in I don’t know how long that I felt truly comfortable to be who I am. I didn’t have those gnawing thoughts of competition and measuring up as I did when I was around able-bodied girls. I was able to let go of my inhibitions and have fun.

On Saturday I spent most of the day introducing myself to new people and making new friends. I enjoyed hearing the diversity in each of their life stories. We all came from different backgrounds and situations but had a common understanding of what it was like to grow up with O.I. I felt a sense of relief telling them about myself and hearing them say, “Oh I know what that’s like.” The level of insight I reached with my fellow O.I. friends was more profound than with my able-bodied friends.

The entertainment for Saturday night was the talent show and the adult dance. My roomies and I got all gussied up in our beautiful dresses for the events. The talent show was so amazing to see. Who knew O.I. people could turn out to be such good singers and dancers?

The dance was what I was truly looking forward to that evening. I love dancing at clubs, so the adults’ dance was right up my alley. My friends and I danced for hours there to a mix of old and new school songs. In the two hours I was there I only stopped for 2 minutes to take a sip of water. I was shaking it to hip-hop here, dancing the Macarena there. I took more pictures than I can count to capture the fun memories of the dance. A funny thing Nathasha mentioned, which I found to be so true. She said that people with O.I. will dance with any part of their body that they can move. If we can only move our toes, we’d be wiggling them like crazy. We all shook what our mamas gave us!

I enjoyed the late night talks I engaged in with my roommates. Sharing bits of our lives really taught me a lot of how to approach different situations. They were all a little older than I was and the words of wisdom they shared I can now apply to my life. They knew where I was coming from and it made it that much easier to open up to them. They are all remarkable women and I admire them. I hope that one day I can inspire someone as they have me.

On Sunday afternoon I had to leave the hotel and take the tedious four hour drive back home. I wish I would’ve have stayed until Monday like everyone else. I bonded so well with them that I didn’t want to leave but my dad had to get back to work.

I’ve made lifelong friends with the most incredible and brave individuals I ever met. I hope to keep in touch with them and reunite with them in the next conference. I took a new perspective home with me. The feeling that you are not alone and that plenty of others you’ve met are going through the same trials in life is a comforting feeling. I’m grateful that I took the initiative to go to my first O.I. conference. It is only the beginning.
Send questions and comments to nathasha@audacitymagazine.com .

Profoundly hurtful words can sear through you and unconsciously lower your self-worth over time. Some even argue that it is just as painful as being beaten. I must admit that this is a difficult topic to discuss being a verbal abuse victim myself.

Verbal abuse doesn’t get as much attention as other types of abuse but that doesn’t make it any less important or less painful. I’m not an enraged ex-girlfriend who wants to expose everything as revenge towards him. I just want people to realize the real issue of being ripped away from who you are. I hope that by sharing my story, some woman out there will be encouraged to find her own strength and leave her abusive relationship.

My story began in summer of my junior year in high school. The typical teenage love story occurred, 18-year-old boy meets 17-year-old girl. He was a senior and one of those “bad boys” types that intrigue most girls. I’m not going to state his name for the sole purpose of anonymity. We began to get to know each other better and he comforted me a lot, since I had recently broken up with another boyfriend of mine. He was sweet, funny, cute, artistic, and basically everything I wanted in a guy.

When he finally asked me out, I swear I felt like I was in one of those love movies with fireworks going off in the background as I kiss my “perfect” guy. I was so happy with him for the next eight months and slowly fell in love with him. He treated me like a princess and I felt so loved by him. Unfortunately, we broke up over a silly fight about not spending enough time together.

Three months later, we met up by chance at a store and began talking again. Needless to say, we got back together. He was a different person this time around. I guess in my own fantasyland of love and thinking I could “change” him, I chose to put up with 3 years of suffering and heartache that ensued. You may think it was the typical lover’s quarrel but over time it formed into something more sinister. Virtually every day we spoke, he told me everything that was wrong with me and what I needed to change in order for him to love me more. I believed him and tried to change in everyway physically and emotionally to make him happy. Whenever I “fixed” something, t he next day

he would mention something else that was supposedly wrong with me.

This horrible cycle continued until I became depressed because I thought that everything about me was wrong. I walked on eggshells around him and tried to never say the wrong thing and do what he told me for the fear of losing him. Many of you are probably thinking, “Why didn’t you just dump him?” Easier said than done, I was in love. As the saying goes, “Love is blind”" and that is true because we often times refuse to see the faults in our loved ones and hope that they will one day make a complete turn-around.

After a while of being criticized and put down, I felt so worthless. I couldn’t even fathom the thought of dumping him because I felt like he was the only one who would every want me, as he often told me.

The typical phone calls would end by him saying, “Sofia you have to stop being so emotional all the time. What are you going to do? Cry like a baby again?” My whole dream of being a doctor would be shot down by him as being ridiculous and that I would never achieve it. I was told countless of times that I needed to be a cold, hard person and that my personality was all wrong.

In the back of my mind, everything I accomplished in changing was one step closer to winning his heart. He would also constantly talk about all the attractive girls he would see that day and how I needed to be that way. Rarely would he take me out to a typical date at the movies or dinner because he was ashamed of me. I had to be the hottest looking girl in the area to go out with him, so I could make him proud to be with me.

Tears flooded my pillow every night after getting off the phone with him or getting home from being out with him. All I wanted was to simply make him happy for once. For the first time in my life I was ashamed to be disabled and wanted to be like one of those able-bodied girls he wanted.

My breaking point was one night when we were having one of our usual arguments and he mentioned that this girl who I thought was just his friend was someone had he had slept with as well. As if the cheating wasn’t bad enough, he poured alcohol on the wound by telling me that she was his perfect girl and that I could never compare to her.

She was more beautiful than I was and more worthy to be loved by him. That just broke me down, I couldn’t even talk at that point. I hung up the phone in total disbelief and ignored all his calls and text messages saying that he was sorry. I immediately called some of my girlfriends and told them everything that happened and they advised me to break up with him on the spot.

Being as stubborn as I was, I didn’t follow their advice exactly. What I did was talk to him and hangout with him less and less during the next few months. I wrote him a long letter, spilling out every piece of hurt I had inside of me because of what he had said over the years. I asked him to come over to my house one day, gave him the letter, and told him it was over.

I didn’t want to be controlled by him anymore. That night he must have read the letter because he called me and apologized for everything he did to me and wished that I could find someone better because I deserved it.

I can’t say whether or not he was being sincere but the one thing I did agree with was that I needed to find someone better. I want to be loved for me and not what they wished I could be. As horrible as that experience was, I truly believe that you can learn from every relationship you are in and apply it in the future.

It’s been five months since my ordeal ended. I feel so much better about myself and free from the constraints of others. I definitely learned never to let someone walk all over me and control me like that again. Why should we ever change so much to please our partners?

If their expectations of you are based on unrealistic standards and selfish needs then you need to reevaluate your relationship. Does he/she really love you? Love should make you feel complete and content most of the time. Love is never endless amounts of heartache and sorrow.

Never let anyone, especially your loved one to bring you down for who you are. People who criticize others are usually trying to mask their own insecurities. I still struggle with trusting men because I sometimes fear of the same outcome with them. I may never fully get over what happened but I do know that I AM worthy of being loved.
Send your questions and comments to nathasha@audacitymagazine.com .