Filed under: Asthma | Tags: amputee, Asthma, asthma improved with exercise, biography, disabilities, disability, disabled, exercise-induced asthma, marathon with asthma, meningococcemia, no arms no legs no problem, run with asthma, running, running with asthma
When I was originally diagnosed with Exercise Induced Asthma (EIA), I was given a prescription for four different daily medications to the tune of $150 per month and was told to swim or walk, not run. That was unacceptable to me. I wanted to run, but “couldn’t.” I went from not being able to run .25 of a mile before I was completely out of breath (and suffered for two days afterward) to running the Los Angeles Marathon medication free. It took me several years to get to that point, and there were five 13.1 events that led up to it, some with the meds and some without, but I got there. I found another way around the block to live the way I wanted to live.
Bob Lujano is also a man who has found another way around the block to live the way he wants to live. He also was given a death sentence, but for real, at the age of nine. While deep in a coma from having all four of his limbs amputated, and wrapped like a mummy (because the meningococcemia bacteria had also eaten his flesh), he sat bolt upright. He stared ahead like a zombie and his mouth was moving.
“Bobby, who are you talking to,” asked his Grandmother.
“I’m talking to Jesus. I’m telling him to leave me here, I want to stay. I have things to do.”
He continued moving his mouth and then just as suddenly, lay back down. His grandmother looked at the monitors for verification that something had just happened but they continued their slow, methodical beep. He was in a coma. She made the sign of the cross and pulled her shawl tightly around her.
That pivotal scene bothered me for years as I struggled to write and publish his book; in large part because losing his limbs wasn’t the whole picture. He had also been raised by the belt, abused by his grandfather, and abandoned by his mom. Baseball was his outlet; he was a star on the field. He dreamt of a professional career like Pete Rose. At the point of having both legs and both arms removed, it is safe to say he had quite literally lost everything: his dignity, his mom, the only tool in his arsenal (baseball) to connect with his dad when he wasn’t getting the belt, his self-esteem, his dreams, half of his body, it was all gone. It was from this posture, of having absolutely nothing (and seemingly nothing to look forward to) that he chose to live.
The offer of life and his choice to embrace it was so radical, I couldn’t understand it.
He chose to stay and live as a quad amputee. Life gave him grueling and painful hours of chemical baths and rehabilitation and prosthetics, people staring every single day, relationship struggles, job struggles, education struggles, and having to explain on a regular basis how he eats pizza with his elbows.
Even though I conquered my asthma through running, it took writing Bob’s story to fully understand what it means to be fully alive.
Complaining isn’t living, it’s copping out. Sitting on the sidelines because “we can’t” is believing a lie. Blaming society or other people is playing the victim. Not moving forward for fear of failure is giving up. Carrying bitterness or anger is self-sabotage. Not participating because we aren’t as fast or as in shape or as graceful or as smart leaves us on the bench. That is not living. It is sitting in a cage.
Bob didn’t choose any of the above; he chose life.
He earned a master’s degree in Sports Management, a bronze medal in the 2004 Paralympics for quad rugby (a full contact sport), co-starred in the Academy nominated documentary Murderball, was a guest on Larry King, works full-time at the Lakeshore Foundation as an Information Specialist for NCHPAD, The National Center for Health, Physical Ability and Disability, owns his own home, owns and drives his own car, is a Sport Laureus Ambassador, President of the USQRA, The United States Quad Rugby Association, is a national and international motivational speaker, types 35 words-per-minute with his elbows, and lives with no caretakers. He is completely independent. He never complains. Ever. He is grateful for everything he has been given.
Living with EIA in comparison to living as a quad amputee, makes me feel silly. There’s no comparison to the enormity he deals with on a daily basis. However, at the core, the decision to do life is the same. Our daily experiences hinge on our definition of the word life.
Do we simply exist, just get through the day, or do we run after our dreams and goals, run towards challenges and obstacles, run towards who we were created to be?
Running towards life is a sense of freedom. The rhythm of moving forward is soothing. Surging through me is the choice to use the power God has so graciously given me, to engage the muscles and feel them burn, to know I am choosing strength over weakness. –Tara Schiro, Author, “No Arms, No Legs, No Problem: When life happens, you can wish to die or chose to live” available on http://www.amazon.com/No-Arms-Legs-Problem-happens/dp/0986305308
Filed under: Asthma | Tags: Asthma, EIA, exercvise induced asthma, running, running with asthma
On April 29, 2013, I was told I had a five centimeter mass in my lower right lung.
Seriously? I had speed walked (we were talking) a 5K charity event on Saturday morning and attended a formal gala charity event Saturday night with no problems. Sunday morning for church I was tired, but, I was up early and out late the day before so why wouldn’t I be tired? Sunday afternoon I was starting to ache and by early evening I had a fever of 102. It hurt to take a deep breath. I had abdominal pain. On Monday I went to the doctor, who sent me to the ER, and was told for the fifth time since January that my lung x-ray was completely clear, but, according to the CT Scan, I had a “ginormous” (doctor’s explanation) mass in my lung that was of “deep concern.” My white blood cell count was high.
They checked for cancer, valley fever, and 25 other diseases since I had been on a mission trip to Mexicali for Easter and our house had been under remodel construction since Thanksgiving. I had been coughing since January and every x-ray had been clear, including that day in the ER. I spent three days in the hospital and the entire month of May in bed and on antibiotics. Joy. My pulmonologist did not want me running after the month of bed-rest. “Wait a while.”
So, to re-cap, I did not run from Christmas to the middle of July.
My first attempt to run was by default and it HURT. My daughter announced she was going for a mile long jog so I decided to follow behind with the dog; we were going to walk. This was actually the first time I had walked the dog since the pneumonia. My daughter takes off and Ginger decides to take off after her! I had to keep pulling her to slow down, but Ginger was bound and determined to not lose my daughter. Ginger’s trot felt like a full out run to me. I had to keep stopping her but she wouldn’t stop for long. (Why is it that when I WANT to run, she feels the need to sniff every single blade of grass on the entire street but when I want to walk and let her sniff, the only thing she wants to do is run?!)
My second attempt was much like the first, minus the dog. I took a two mile walk, no jogging, and felt like I had run a marathon. I had to take more naps. The doctor started me back on Singulair at night, which I am still taking. I need it right now to get me back over the hump while I regain my base.
During these many months of being sick, and then really, really sick, I received many comments and questions from readers of this blog. Oh the guilt of not running and yet encouraging them to keep running! Last year, from August, 2012-June, 2013 was one of the worst years on record for stress for me and my family. A banner year of chaos. Which is probably why I ended up in the hospital. But this blog kept me going. The reader comments kept me going. My mental state was so low during all the sickness that I seriously considered stopping running. I had no interest whatsoever. I just wanted to crawl into a hole and not come out. That shows how sick I was; I am a firm believer that running clears out the cobwebs in your body, your brain, and your spirit. It’s the miracle cure for everything but I just wanted to give up.
But, as I began to recover and feel more myself, I also began to feel like a schlep. I need the exercise to stay healthy. I do not want to go back to a life of medication and sickness. I am starting over.
I am participating in the annual cross country 5K summer series at the local college and my first week time was 39:07, ten minutes off my PR; my second week was 38 something and my third week was 36:18. Two more weeks to go in the series. I’m coming back but it is a slow process. I have to follow my own advice and be patient. I had to let go of my ego about being last again in the 5K race and just be grateful that I was on the course and not in the hospital or in bed. My words to all of the readers were coming back to haunt me: start slow, lose the ego, don’t be embarrassed about walking, just be easy on yourself while you build your speed and strength. Meh. My goal is to run the LA Marathon in March of 2014. I will continue to post my progress on this “starting over” phase of running.
Thank you for writing in, thank you for not quitting, thank you breathing with me. –Tara Hoke Schiro
Filed under: 2011, Asthma | Tags: annual report, blog, excerpt, helper monkeys, sydney opera house
The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.
Here’s an excerpt:
The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 20,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.
Filed under: 2011 | Tags: Africa, Children of the Nations, COTN, Lira, Mission trip, Missions, Serve, Tara Hoke Schiro, Tara Schiro, Uganda
I found an orphan in Uganda; but not the one I was looking for or wanted to meet. This is the one I was actively pushing away. I didn’t want to acknowledge she existed. I tried to amuse her by being friendly and pretending she was a part of the group. When a situation arose that demanded truth, I tried to placate her by handing her a journal and telling her to write but that didn’t really work. Finally, I tried to ignore her altogether but she kept coming back, demanding my attention but not telling me why. She wanted to show me something. I told her no.
The veil between us and God is a little bit thinner in Africa. Here in the States it seems like a drape hanging between us and the throne; the kind that is so thick it blocks the light from coming in the window to wake you up. In Africa, it seems like gauze billowing in the breeze; you can make out images of the Spirit, but it’s still not completely clear. Minus the thick heaviness of gathering material possessions, or bank deposits, or the busyness of success, there is the freedom to feel—to allow—the breeze of grace and compassion to be the wind that carries you, that connects your soul to another.
My favorite part of the trip was shaking hands at a local high school we visited in Lira. Our team was to be the highlight of their assembly. They weren’t ready for us when we arrived so they sat us in the middle of the courtyard to wait. Sitting in a fishbowl is an understatement. Several hundred kids, maybe a thousand, sat two or three deep around the perimeter on the sidewalks of the buildings…all staring at us, the “moonos,” the white people. Because of another assembly that was running late, it was decided we would not stay and talk to the students. Our team leader instructed us to go around the courtyard and quickly high-five the kids sitting and waiting. I didn’t want to be quick. I tried to shake as many hands as possible, looking each one in the eye, smiling, saying hello. Some shook my hand, some gave me the knuckle bump, some took my hand with palms up, and one young man put a fist to his chest. I asked what that meant. “Friend. You are my friend.”
For most of the trip I felt very inadequate and out of place. I painted the buildings at the COTN orphanage with other team members, but this isn’t what was needed. What was needed was something I didn’t think I had. I’m not a good conversationalist; mingling at cocktail parties is worse than a root canal. I’m not good at praying; especially out loud in front of an audience. I’m not good at imparting spiritual wisdom; I don’t know the right words to use to make someone feel better. I needed to offer them my soul but my soul was blocked off. I felt all I had to offer was a smile and a handshake. A simple touch that said, “You matter. You are not forgotten.”
That orphan girl, the one that wouldn’t leave me alone, needs to hear that she matters and that she is not forgotten. Physical poverty is one thing; wells can be dug, food can be brought, medicine can be supplied, to end the deprivation . But spiritual deficiency is something else entirely. It is up to the individual, a decision must be made, to see and believe. Spiritual fullness doesn’t get delivered in a package from another person. It is first a personal decision to reach up vertically and plug our soul into the soul of God himself, to allow Him to be everything we need, to depend on Him for the very breath in our lungs; and then it is reaching out horizontally and connecting our soul to the souls of our fellow human beings, validating them, breathing life into them, putting our arms around them and never letting go.
The orphan girl wanted to show me something. I told her no.
If you want to read more about my mission trip to Uganda, type in my name and the words write with grace africa and the site I blog about the trip should come up.
Filed under: Asthma | Tags: Asthma, asthma improved with exercise, can i run with asthma, EIA, exercise asthma, exercise-induced asthma, half marathon with asthma, marathon training with asthma, marathon with asthma, run with asthma, running, running with asthma
One of the most popular questions that lands people on this blog is “Can I run…a 1/2 marathon, cross country, a ten minute mile…a 5K… with asthma?” The short answer is yes. One of the most frequent questions I am personally asked is, “How…do I breathe while running with asthma, how can I run a faster mile, how can I keep up with my cross country team, how do I train for a 1/2 marathon or 5K? The short answer is be consistent all year long.
The longer answer is this: The lungs are a muscle. The more you use them, the stronger they get. But, one sentence is not very helpful for such an ambiguous disease. There are a lot of hills to overcome, many rainstorms to get through, humidity to sweat through, and freezing temperatures to play mind games with: do I stay inside my cozy house and watch a movie or go out and freeze while I break a sweat?
The correct answer is this: We first need to build a base of consistency. I suspect that many of us, myself included, want to do better without first laying the foundation. If you have asthma, laying your running foundation takes twice as long and twice as much discipline as our non-asthma-running counterparts because we need to rest more.
I remember vividly it taking two or three days for me to recuperate from a two mile run. Once my lungs were inflamed from a run, any type of movement–laundry, straightening the house, running errands–would be understood by my lungs as exercise. I had to stop moving and rest. That was when I was on four asthma medications per day. I am now med-free and have completed five half-marathon events and the full Los Angeles Marathon in 2014. 26.2 miles, baby! It took me a couple of years to build a strong base because I had to rest A LOT. In hindsight I should have taken shorter walks or runs but my ego got in the way. Self-imposed chaos!
We who have EIA have the added benefit of thinking we’re going to pass out and die right in the middle of the trail. When I first started running with asthma, as soon as I felt my quads or lungs (weak muscles), the mind trip began. I have to stop, I can’t do this, I can’t breathe, I’m in pain, and on and on. I had to train myself where my boundary line was. I had to remind myself that I’ve climbed that hill before and nothing happened. I didn’t pass out, I didn’t die. I’m fine.
Regular, consistent running, all year long, will provide what is called a “base.” This is your foundation to stand on. Maybe you can only walk for one mile. Maybe you can run for two miles. Regardless of where your starting point is, increase your overall exercise time by 10% per week. This prevents injury and safely gets you to your next goal. Work your way up to running, or walking, three or four times per week. A base, or foundation, takes several months of consistent workouts to put in place. Once it’s there, you can stand tall to reach your next goal: the 5K race, the ½ marathon, a new personal record in track or cross country, a ten-minute mile.
Remember, it’s not just the lungs that need consistent workouts, it’s also the mind. We need to train our brains, through consistency, that we can do this. We can run with asthma without it running us.
Filed under: Asthma | Tags: Asthma, EIA, exercise-induced asthma, head, marathon, run, run with asthma, running, running with asthma, training, trust issues
Getting your head out of the way when running is hard for any type of runner, but it’s a bigger problem for those of us with asthma. Getting your head and your lungs to work as a team is almost impossible. Adding a trainer or instructor to the mix could land you in the hospital. Trust is huge.
Before I realized I had EIA, I tried, and failed, several aerobic classes. I could never keep up. I was immediately tired and about halfway through the class I was spent. The instructor would see me lagging behind and “encourage” me to keep going. I just couldn’t do it. My body was so weak from lack of oxygen that I had to stop. Completely embarrassed, I tried as best I could and then made excuses at the end of the class for why I couldn’t participate the way the others did. For three or four days after the class I was completely exhausted and wanted to sleep for hours. Eventually I gave up trying, thinking I was just too out of shape to attend an aerobic class.
I’ve always had the desire to run, but again, could never keep up. I tried, and failed, at running for the better part of twenty years. When running with other people, I stopped to walk early in the run, like, in the first five minutes. They would all say the same thing: are you tired already? Yes. So I stopped running with other people. I ran alone but never had much success going more than two miles. Even two miles was hard.
Once I figured out I had EIA, the real work began both physically and emotionally. I wanted to run; I had the desire, but I felt my lungs were holding me back. What I realized is that my head was holding me back. I immediately began an unhealthy dialogue in my head: I can’t run that far. I can’t run that fast. I can’t climb that hill. I can’t do sprints. I can’t run a ½ marathon. I can’t, I can’t I can’t. The reason I gave myself? I have asthma, so I can’t. It took me many months, if not years, to overcome this.
Runners need trainers to improve. Or at least good advice from reputable places such as Runner’s World. But here’s the thing, I discounted myself as a runner. I was a runner with a handicap that a trainer or magazine or even a fellow runner didn’t understand. I would look at other runners who seemed to excel at their sport and immediately put clarification to their success: they don’t have asthma. I needed to trust myself and my body before I could have ears to hear the information that would make me a better runner, with or without asthma.
I had to trust that I wasn’t going to pass out on the trail. I had to push myself to my absolute limit before I could trust anyone else to push me to the limit. I had to learn how the asthma affects me on hills, in wind, in 100 degree heat, in rain, during allergy season, and during spin class. I am a member of a running team at church and they are all experienced runners. It’s hard for me to take their advice so that I can run faster or longer because…they don’t have asthma. I don’t trust that my body will be able to do what their body can do.
I’ve made huge strides in the last four years. I’ve completed four ½ marathons and more than 35 5K events. My time has improved, my speed has improved, but I still have trust issues. I’m learning to tell myself that I am a runner. Period. And runner’s need help if they want to improve. But to put yourself in a vulnerable position, to allow another runner, or an instructor, or a trainer, to tell you what to do and how far to push your body is just downright scary. It’s a major trust issue.
Filed under: Asthma | Tags: Asthma, asthma improved with exercise, can i run with asthma, exercise asthma, exercise-induced asthma, half marathon with asthma, marathon training with asthma, marathon with asthma, run with asthma, running, running with asthma
It really bugged me when he said it was all in my head. His credentials came with a therapist certification, but he wasn’t a runner and he didn’t have asthma. So as far as I was concerned, he didn’t know what he was talking about. I immediately dismissed his assessment by rolling my eyes, pursing my lips and refusing to look him in the eye for the rest of our time; which wasn’t hard because there were only ten minutes left. Ten, way-too-long minutes. When I arrived at home, I paced for a long time. How could he say such a ridiculous thing? How could he dismiss my symptoms, the diagnosis, all the medication? How could he so carelessly invalidate me, and the Doctor, and basically accuse me of lying? I was pissed.
He made the comment during his explanation of the mind-body connection in relation to illness. When our minds are not in the right place, when we stuff our pain instead of dealing with it, the body takes it in and turns it into disease: tumors, cancer, acid reflux, gastrointestinal disorders, asthma, you name it. We swallow a lot of pain from life through divorce, death, abandonment, rejection, etc. and if we don’t purge it out of us in a healthy way it will stay in our body and reek havoc. This was all fine until he said the asthma was all in my head. He laughed and insisted that I did not have exercised-induced asthma.
I did what any good rebellious woman would do. I went into the hills and ran. The dirt is my thinking ground. I did three loops on the cross country track, up and over, around and around. Five miles later I was pooped and my lungs were burning. I couldn’t stop thinking about something else he said: You need to set some boundaries and stop letting other people run your life. I knew this to be true so I resolved to make it happen. I made an appointment with my mom and set the ground rules: no more men. One dad and two step dads is enough for me, I do not want anything to do with number four. Keep it to yourself. For the next year I had to practice keeping that boundary each time she pushed it.
Next I set boundaries with my husband. No more being responsible for his guilt and insecurities. Again, practice makes perfect to keep everyone on their own side of the fence. Once successful, I was gaining some self confidence. The half marathon was coming up and I was determined to run this one med free. I wanted to be done with the twice-a-day Advair, the once-a-day Singulair and Alegra, and the just-before-a-run Albuterol for a total of $150 per month. The thought of running 13.1 miles med free was frightening, but I was determined so I pushed harder.
In another run through the hills, I started thinking about my mom and the more I thought the angrier I became. I had never been given permission to grieve the divorce, now 20 years in the past, because my anger made her feel guilty; so it was banned. Running up the hill I felt my body begin to give out, I was running out of steam. My breathing was labored. My inhaler was back in the car. I allowed the anger and began to scream in my head, “She’s not my mother! She’s not my mother!” To this day, I do not know what I meant by that, but at the time it worked as a release. As I came down the other side of the hill I was overcome with grief. For the record: it is physically impossible to run and cry at the same time. The lungs cannot multi-task. I stopped running, bent over and sobbed. Tears and snot ran from my eyes and nose. I let it all pour out of me and into the dirt. I stopped running away.
Sometime later I was forced to acknowledge that my asthma was getting better. There was no denying the relationship between my mental health and physical health; as the mental got better, so did my physical and vice versa. I slowly weaned myself off of all the medication and ran the ½ marathon completely med free. Then I came across some sort of spiritual book, which I can’t remember the name of, that listed all types of medical problems, from bladder infections to eye diseases, to cancer, to you guessed it…asthma. Each diagnosis had a corresponding reason to go with it. I flipped to the only one I cared about. “Asthma: comes from not having a voice, feeling trapped.”
So I guess that annoying therapist who doesn’t run and who’s never had a breathing problem was right, much as I hate to admit it. My symptoms were real. My diagnosis was real. I failed the breathing diagnostic test at the hospital with flying colors. My disease was real. But the problem wasn’t in my lungs; the problem was in my soul. My mind, being the control freak that it is, and not knowing what to do with a soul feeling of being trapped, a feeling of not having a voice, sent the problem to my lungs. It was too much for them to bear; they began to shut down and I couldn’t breathe.
I’ve run five ½ marathons so far, two of them med free. I feel free when I run; the wind blowing my hair, the music in my ears. And my soul is happy with every deep and relaxing breath.