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STOP THIEF! I WANT MY LUNGS BACK! NOW!!!!!!!!
by Susan Grace 6/23/04
There was no medicine for me when I was a child. My earliest memories are that of sitting on the couch in the sunlight watching kids romp and play, and somehow, I knew I could not join them. All I could do was sit there and watch the other kids, and think to myself, "Dear God, please make it stop hurting when I breathe! Dear God, please make it stop hurting when I breathe!", over and over again. It went on day after day, month after month, because I had asthma. Severe asthma. The kind where my brothers and sisters would sometimes find me unconscious in one part of the house or another. The kind where my mom, a Registered Nurse, would have to stay up with me almost every night because I couldn't breathe. And then somehow, with little or no sleep, she would have to go to work again. You want to know what a SUPERWOMAN is? My mom was a superwoman. Thank god she was a Nurse. Because of her heroic efforts she saved my life many times. Not only did she work at the hospital in Tiny Town, Wisconsin; she also had 10 kids, including me, who would be forever sick. I was her full-time job. I was "code blue" at least three times before I reached the age of 10. I had the kind of asthma that, as a child, made me spend many, many weeks in the hospital, usually unconscious when I was taken in, and waking up in an isolated room called "critical care". Just me and all kinds of machines surrounding me. From time to time when I was conscious, I would see my parents and siblings watching me from the large glass window that separated us. Later when I was out of the critical care unit, my siblings would tell me how I happened to be admitted to the hospital AGAIN, for I would be unconscious for days, and have no memory of the asthma attack. It was like a cruel marathon game they were forced to play; always on the alert, day and night, in case I had an attack and someone would have to run and find mom.
There was no medicine for me when I was a child. Not in the first DECADE of my life. So I could not get relief from my symptoms. Imagine you have just run a 1-mile race. You come to the finish line a winner and you stop running, bend over to put your hands on your knees so you can "catch your breath." However, as you are still panting, imagine someone placing barbed wire around your chest and pulling tight. Picture yourself as you are placed flat on the ground, and someone adding 20 - 30 pounds of weight to your chest. Can you FEEL all of these symptoms at once? No? Try imagining living like this for hours, days, and months - YEARS. Can you imagine feeling this way and trying to walk to school, or doing your laundry, or even putting in an eight-hour workday?
As a child, and even through some of my adult life I've heard, "Susan, it's all in your head." And all I could ever say in return was, "Who would EVER put themselves in that kind of hell?" But they didn't understand. And they would just shake their heads at me, still thinking I had a CHOICE in the matter.
A big event in my life when I was 12 was a special religious ceremony Catholics went through - Confirmation. In the Catholic religion, this is when you became a "Soldier of Christ." We would study for months in school to learn our prayers and a more in-depth look into our religion. The Big Day would come when, with our sponsor, in our new clothes, we would stand in front of the church and loved ones and proclaim our beliefs. About a week before my confirmation, I was once again unconscious in the hospital. I remember one moment, lasting perhaps 5 seconds tops, opening my eyes, seeing a priest bending over me, and my mom and sister on the other side of my bed. I had passed out again because my lungs could not get any air. Instead of being with my classmates for Our Special Confirmation Ceremony, I was being given the "Sacrament of the Dead."
Shortly after that event, the doctors told my parents it would be best to relocate to Florida. The doctors felt there wasn't much they could do for me, but a warmer climate would help. I just turned 14 when we moved to south Florida. The weirdest thing happened when we got here. My father, who also suffered from severe asthma, didn't suffer anymore. He practically OUTGREW it. I however got WORSE! As if any of us could understand that!!!! After being tested for allergies, the doctors determined that I was allergic to 99% of everything that grew in south Florida!!!!!! None of these things grew in Tiny Town, Wisconsin.
By this time, medicine had STEROIDS. And guess what? At 14 years old, the doctors decided that steroids would benefit me greatly. So I started taking steroids. Remember that I was the new kid in town and in school, I didn't know a soul. The changes I went through with the steroids WERE HELL - for my parents, my doctors and myself. I started noticing myself gaining weight. (I had weighed 90 pounds, I was - and still am - 4' 11"). My teachers, who used to stop me after class, or even in the hallway, would tell me what a beautiful complexion I had. No more. The steroids brought on acne and weight gain in a severe way - and those same teachers would stop me and ask, "What happened?" Other classmates would stop and ask me, "How come your legs are so big?" I started getting angry about the changes the steroids were forcing me to go through. It was hard enough for me being away from my beloved Wisconsin, terribly missing my friends as they started high school. I remember staying at the dinner table longer than I used to - when you can't breathe - you don't put stuff into your mouth. So the changes had me perplexed. I asked my mom and the doctors about the weight gain, and guess what?? IT WAS ALL IN MY HEAD!!!! 10 to 20 pounds was all in my head?????? I got angry. I told myself, something's going on here and I'm gonna find out just exactly what is going on with my body. I may be 14 years old, but I'm not as dumb as they think I am. So every week when I was at the doctor's office, I would ask to read my file. The doctors and nurses, who could barely hide their snickers, would let me. And I would write down three words that I didn't understand every time. My mom, being an Nurse, had medical books. I looked up the words - I looked up the side effects of steroids. As if I was mad before, I now became enraged. IT WAS NOT ALL IN MY HEAD - IT NEVER WAS!!!!!!!!!!!! The side effects alone from steroids ran a PAGE long. So, I thought I would show them a thing or two and I quit taking my medicine. All of it, just like that. The next thing I knew, I was unconscious again, waking up in the hospital after days had gone by. I felt defeated. They were right. I HAD to take this horrible medicine with the horrible side effects if I was going to make it. I watched as my face puffed up. The doctors would tease me and say I looked like a chipmunk storing nuts in my cheeks. How insensitive. I still remember one doctor getting in my face at 15 years old and yelling at me, "Do you want to be 30 pounds overweight or do you want to be DEAD?" I just broke down and sobbed.
After I graduated high school, I moved back to my beloved Wisconsin. The doctors advised me at that time in my life, that each Asthma attack was as traumatic as someone undergoing TRIPLE BY-PASS surgery. When I thought of all the attacks I had actually lived through prior to being told this, I was truly amazed that I had lived to the ripe old age of 25.
When I was 27, I met a wonderful man in Milwaukee, Wisconsin. A man who wanted to live with me and love me for who I was. A man who couldn't wait to be married to me. I was on cloud seven - being afraid to let myself go to cloud nine until he had been schooled in "What Its Like To Live With An Asthmatic 101." We lived together for a while before he witnessed an asthma attack. His education was worse than even I could have imagined. One day while he was at work, a sudden attack came on. I was so weak I had to crawl to the phone. I dialed the operator. (There was still no "911" at this time, or beepers or cell phones, so I could not reach my fiancee). My usually loud voice was merely a whisper as I said, "I need help. I don't want to die." I was on the floor with the phone in my hand. The operator said to me, "I won't let you die, hold on." she stayed with me on the line and called paramedics to our house. As the paramedics pulled away with me, my fiancée was just about to pull up in the driveway and saw the rescue vehicle racing away, and he followed us to the hospital. I was in and out of consciousness. When you are on the verge of dying, your veins collapse and sink further into your body. The nurses were frantically trying to find my veins to start IVs. They had to stick the needles in me - IN THE SAME PLACE - over and over again to reach my veins. I saw my fiancee running to catch up with me on the stretcher being wheeled to - you know where - the respiratory critical care unit. I was screaming and crying - please stop please stop please stop - as they stuck me over and over again. When my fiancee finally caught up with me, he saw four nurses, including two males, holding me down, sticking me over and over again - I looked at him as everyone was running down the hall, I could hear CODE BLUE CODE BLUE coming over the hospital intercom. I waited for the loving, comforting words I knew I would hear from him to save me. The last words I heard from my fiancee before passing out were, "I can't take this. I gotta leave." And then there was blackness.
My career life didn't fair much better. I was a certified paralegal, and I was so proud of the fact that I was able to put myself through school and have this career. I was proud when I received my certificate and graduated at the top of my class. What a victory for me!!!! I could finally be "like the others"!!!!!!!!!!! But the sweet taste of victory would not last too long. Although I loved my work, the litigation field is a very fast paced world, which is one of the things I loved about it. Things could change in an instant. Attorneys could be on the doorstep of the courthouse ready for trial, and suddenly, the case could settle. When I was in my first new years, I would sometimes have mild attacks at work - nothing so severe that it would send me home. But soon I began to see my peers staring at me and whispering. I knew they could hear my wheezing. They could see me using an inhaler. But they could not accept my strange breathing and coughing. Imagine my horror when I was told I was no longer needed because a pregnant woman in the office - whom I didn't even work with and was on the other side of the office - told the office manager she didn't want her unborn baby to "catch something." But asthma isn't contagious. Certainly they knew that! I had been honest on my work application. Still, I was shown the door.
This only made me more determined. There was so much satisfaction and intrigue for me in the legal field. But I found there was no mercy, no compassion. No phone calls from the attorneys I worked extra hours for, (and that's attorneys-plural-because I was so good at my job I could work for several at a time). No law firm could afford to have a litigation paralegal sick for so long. Not only that, the firms could see what an insurance expense I would be. That I could understand, but not accept. I fought harder for my career because it meant so much to me. After my first asthma attack would put me in the hospital, the doctors would not allow me to go back to work full-time. There had to be a week of bedrest at home, then I could return part-time for a week or two to see "how it went." Always, my co-workers would resent me because they had to do my work. I LOOKED fine to them. It didn't matter that I had filled in for THEM while they were sick or on vacation. I was shown the door time and time again after I went back to work after being hospitalized. Eventually, when I reached my early 40's, the doctors advised me to seek other work, as litigation was one of the most pressured jobs I could possibly have chosen. After I lost five jobs in five years, the doctors finally advised me to apply for disability. The severity of my asthma had finally "disabled" me.
Even though I am not quite 50, the doctors advise me my body is like that of a 60 -65 year old. My mom, the Registered Nurse, is now 82 and knows for a fact (as I do) that she is healthier than I am. Some would say I have a life a lot of people would envy. No longer able to work, I have created a much different life for myself than I ever imagined. I have learned to enjoy sedendary activities as gardening, having beautiful roses in my home, or the simple pleasure of tasting the tomatoes that I grew, basking in the sun (thinking of the legal field I was forced to leave) walking my new dog, Lorenzo, two or three blocks a day. I LOVE watching the Green Bay Packers. I do volunteer work for others less fortunate than myself on a limited basis. But still I wonder, what kind of contribution could I have made to society if I had not been held back by a force greater than myself? Would I have had the success I dreamed of? What kind of mother would I have been? What kind of family would I have had? What kind of house could I have bought had I not been forced to "retire" early? I had an incredibly strong mind and desire to succeed. Succeeding over my asthma seems a hollow victory. I wish I could have seen exactly how far I could have gone in my life without being held back by this dark force.
I had such high aspirations for myself. To this day I remember when I was 13 years old, just moved to Florida, looking out my window and just KNOWING I could reach the sky with my determination and independence. I knew nothing could stop me. I had no fear. Unfortunately, I did not get to realize any of my dreams. I did not get to walk down the aisle with my dad and dance with him at my wedding like my sisters did. I was unable to have babies. I was unable to own a horse, learn how to scuba-dive. I was not able to see how far I could go in my chosen career. I was not able to buy a home for myself with the earnings I thought I would have from a successful career. Learning to ask others for help and relying on them when I am sick devastates me.
Surprisingly now, at this stage of the game, colleagues will call me from time to time because they need my advice. Some of them are colleagues who made fun of me in the workplace when I had trouble with my asthma. Some have learned they have adult onset of asthma and are shocked at the changes in their lives. They want to know what to do. And I discovered what I want to do. I want to teach others about asthma. I want to go to to schools and teach kids how they can help each other when a classmate has asthma. Teach parents and siblings what its like, how they can help each other get past their fears. Because now, asthma is recognized in the world as a major illness. It's an incredible victory. No one has to hear "It's all in your head." Mothers do not have to run from doctor to doctor like my mom did to get relief for their child. As a matter of fact, for the past decade or so, I've had doctors and nurses telling ME that they have never seen such a terrible sight as a child struggling to catch their breath. And they tell me how it scares THEM.
Now, in this day and age, athletes do commercials on TV saying how they manage their asthma. The day has finally come. Everyone knows someone who has asthma. There are asthma clinics. We finally know IT IS NOT ALL IN OUR HEADS!!!!!!!!!!!!!!!! That's the best victory of all.
If you have any questions or would like more information, please feel free to email me at : SGrace.
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