Very pleased to post installments of an original autobiography by Amy Martinsen, the author of "The secret obituary writer" and "Changing Worlds." Amy suffered from a debilitating combination of muscle tension dysphonia and vocal cord dysfunction for many years. Her story of recovery is truly inspiring and we are very fortunate to have her write for The Voice Forum exclusively. All contents are copyrighted. No reproduction is permitted. You may share the story on your own Facebook page by crediting The Voice Forum. Most names in the story are in initials for privacy. #fellowshipofthelarynx #frysade #muscletensiondysphonia #vocalfolddysfunction
"THE COURAGE TO TRY ONE MORE TIME"
by Amy Martinsen
I slumped into a chair in the waiting area of the pharmacy at Walgreen. I chose my favorite chair, next to the endcap, so I can rest my head against it. Phil the manager of the pharmacy smiled at me and told me my stuff will be ready in just a few minutes. I closed my eyes and willed myself to control my breathing: I’m wheezing with my mouth open in between wall-rattling coughs and people are staring—but I can’t help it. Phil is watching me closely and after a few minutes brings me a bottle of cold water and pats my hand, then goes back behind the counter. I know I’m as white as a ghost and my lips are purple because my fingernail beds are purple, too. Lack of oxygen can do that. Even on my good days I do a version of this at least twice as I make my way through a grocery store. Shopping is always a death march for me.
More people are looking at me and I pray Phil will hurry. Little do they know that Phil sees a version of this Amy every two months or so. That’s how often I have Bronchitis. I just finished a session with my so called famous pulmonologist. I went to him a few years ago, on the recommendation of a good friend because he’s “the best in the field, particularly with diagnosing.” He took one look at me and proclaimed I have asthma and chronic bronchitis and will just keep getting bronchitis “because that’s how my body is.” He prescribed me all kinds of inhalers and medications to help me, but nothing seems to save me from what I’m going through right now . . . except his default remedy for everything: losing weight.
I hate going to this doctor because each appointment inevitably turns into him pointing his finger at me, raising his voice and telling me I have to lose weight. He even made me watch the computer screen as he typed in “obese” in all caps next to my name in my digital file. I am five foot, eight inches and weigh 180 pounds and last I checked no circus has come looking for me. How in the hell am I supposed to lose weight when I can’t push a grocery cart down two aisles without stopping for air, and live on a steady diet of steroids?
Phil brings me my rather large bag of stuff: inhalers, breathing machine meds, oral steroids, antibiotics and cough medicine. I thank him and then stand up, feeling dizzy and panicky because I have to walk out to my car which is across the store and half the length of the parking lot. Will I have enough air to do this? This question is repeated on a loop in my mind all the time. I look at my bag of drugs and try to trust in them—Thanksgiving is only a week away and we have over sixty people coming to our home expecting a huge dinner and a happy, energetic hostess. My best hope is that these meds will work long enough to get me past this event. But I know I’ll be back here in a month or so, slumped against the endcap, waiting for Phil to give me another bag of false hope.
This goes on for fifteen years.
Then my “you’re fat” pulmonologist retired. I was nervous about meeting his replacement but, as usual, so sick I didn’t care. Would it be another older man telling me I’m fat? I couldn’t have been more surprised when the new pulmonologist Dr. R walked in. She was young, so young she could have been one of my daughters. I just sat there staring at her as she began asking me questions about how I felt. Then I did something I NEVER do. I started crying—weeping, really. I just kept telling her over and over that I can’t go on this way. I truly believed in my heart I wouldn’t live much longer at the rate I was going. She was kind and understanding and listened . . . and never once said I was fat. [I actually shared this information about her predecessor - she wasn’t happy]
After I pulled it together she made me a promise: that she would do everything she could to fix me. I was so sick and so hopeless I didn’t believe her. I was just happy to have a doctor who would listen and understand. She did so much more than that, though. She and another doctor in their group went through all my files – even from my family doctor – going back ten years. When I met with her again she said the numbers didn’t add up, they didn’t follow the pattern of a person with asthma and chronic bronchitis. She and the other doctor were challenging these diagnoses and felt there was something wrong with my larynx. Would I be willing to go to MC for some tests?
To this day I’m ashamed to say I felt no hope with this announcement. I knew it was a big deal to challenge another doctor’s diagnoses, especially one as renowned as my previous doctor, so I appreciated this effort. But I still felt I wouldn’t receive a different outcome from MC. Sadly I put off this test for three months.
It was early fall and I was really sick, again, and back in to see Dr. R. She had an emergency and I ended up with Dr. L —the other doctor who had done the thorough search of my records. She actually brought up my records on her computer to show me, explaining how my numbers [breathing tests, etc.] don’t add up and that she strongly felt I had something wrong with my larynx. She asked me if I had been to MC for tests and I shook my head, crying. I’ll never forget what happened next. She made me look her in the eye and asked, “Will you find the strength to try one more time?” I promised her I would, went home and made the appointment. For the rest of my life I’ll be grateful for that decision and for these kind, brave women who helped me make it.
It was early December when I got into Mayo and was still a little sick and not feeling super great. And I wasn’t very hopeful either. I knew this first visit was going to be another meet-and-greet where I’d do nothing but fill out forms and answer questions to a doctor’s back while he typed into a computer. I told my husband to not bother coming…it would be a waste of time for him. Once I was checked in, they showed me to a room filled with all kinds of machines. In my bitter, hopeless state of mind I thought Great! They stick me in some kind of broom closet. I don’t even get a regular patient room.
Then a whole line-up of doctors and pathologists walked in. Dr. DL had me sit in a chair in the middle of the machines and began to explain all the tests they were going to do. I was shocked! I couldn’t believe they were going to actually do something today. What happened to the traditional meet-and-greet and all the forms and me answering questions to the back of a doctor? When I asked Dr. DL this, he said “We do things a bit differently here at the MC.” I soon found out this was an enormous understatement.
They started doing all sorts of weird tests, the weirdest being a small camera they ran up my nose and down my throat. This felt like torture and I had tears and snot everywhere, just trying to keep breathing and doing all the things they wanted me to. Behind me was a large screen, showing all the good stuff they were seeing with that little camera that was making me gag. All I could see were the doctors writing stuff on their clip boards and hearing them ooh and aah at whatever they were seeing in my throat. They seemed to be happy about something and when I asked what was going on, Dr. DL leaned over, patted my knee and asked, “Are you ready to be a whole lot better?”
The tears came in earnest then. After I had all cameras out of me and was sufficiently wiped up, he explained that not only do I have muscle tension dysphonia and vocal cord dysfunction, but I have the most perfect case he’d ever seen! I had no idea what he was talking about but knew at that point I had something completely different than asthma and chronic bronchitis. He turned me over to my beloved CK, who would become my voice pathologist and dear friend, and said with her help he could promise me complete recovery. Then he asked me again, “Are you ready to be better?” I answered him with a firm “Yes!”
Thus began a wonderful and challenging journey of recovery.
My first appointment with my voice pathologist CK was on January 2nd. I felt this was appropriate: a new year was beginning and I had a miracle. I had vowed that if God was going to serve me a miracle on a silver platter, I would do EVERYTHING CK told me to do. I had no idea how quickly this resolve would be tested.
I was still sick, on antibiotics and very congested, so the few voice exercises she started me on were difficult, having to maneuver around the congestion. I kept at it, though, holding fast to my resolve to do everything asked of me. I really had no idea what to expect—my experience for years being that of getting sick, taking drugs, having a few weeks of “well” and then repeat.
CK understood this confusion and gave me a comprehensive explanation of how the subsystems of voice worked (respiratory, phonatory, and resonatory systems). She explained to me that I spoke while holding my breath, in glottal fry voice. Whatever my glottal was, I was sure it was fried.
One of my complaints was that I could not speak without my voice breaking, throat hurting, and feeling like I have to gasp for more air. Because of the position I held in my church [Stake Primary President for the LDS Church] I was required to do a great deal of public speaking. Truly the hardest thing for me to do was to stand, while wearing a painful band of constricting elastic known as a bra, and talk. I always ended up in a state of hyperventilation, unable to speak more than a few words at a time, so "projecting" was out of the question. She explained that glottal fry is the lowest register in phonation, and although it is natural, exclusively talking in glottal fry with an inefficient breathing pattern may be the culprit to my voice and breathing problem. Apparently, glottal fry is created by disengaging a pair of vocal fold muscles so that they flap around creating a creaky sound. She introduced something called resonant voice and explained that all I had to focus on was "easy throat and buzzy lips." I had no idea how making my lips buzz would bring about healing for me, but trusted her and gave it my best shot. It was very difficult. She brought out a cup half filled with water and asked me to blow steady water bubbles with a drinking straw. To my surprise, I could not do it. Repeated tries brought some bursts of inconsistent water bubbles but I could not sustain them for more than a second. Then she started talking about my breathing.
I was breathing inefficiently.
What? I didn’t care how I got the air in just as long as I got it in! But when we started working on breathing exercises, I couldn’t do them. I’ll never forget this session. She told me that the correct way to breath was like a fireplace bellow: our lower stomach and diaphragm expanding on our intake like that of the bellow opening up, our exhale was like that of the bellow contracting. I just looked at her, dumbfounded. I have spent so many years desperate to get air, any amount of air, in my lungs I never once gave a thought to how I did it. When you feel like you’re suffocating you don’t notice your form. [I now know I had spent years—my lifetime, really—breathing high chested: all neck and throat. A BIG no-no]
When I tried to breathe the “bellow” way it felt completely and utterly foreign. Like walking backward with shoes on the wrong feet, up a down escalator…it was horrible. Always so kind and patient, CK had me stand behind her and place my hands on her ribcage and abdomen so I could feel how she breathed, feel the “bellow” expand and contract. This helped me visualize what needed to happen, yet when I tried, my muscles just wouldn’t do it. [The “bellow” imagery is now one of my strongest tools. When I feel my breathing is off—usually when stressed—I visualize a bellow calmly expanding and contracting with life-giving air, and tell myself to “be the bellow; be one with the bellow; I am the bellow.” Works like a charm.]
After several awkward tries at breathing bellow-like, CK told me something that ended up being the first step in helping me trust my body. It was fair to say up to this point I had very little trust that my body could do anything but continually get sick despite my and my doctor’s best efforts. She told me that I was born breathing correctly and although I learned a maladaptive behavior somewhere along the way, my body would remember the right way. I needed to trust that my body would remember how it was created to work. This was my first encounter with the term “muscle memory,” a term I now use daily.
It was determined that I simply did not have the core muscle strength to do the exercises necessary to breathe like a bellow, so she was sending me “across the street” meaning across the 101 freeway, to a land called City North…to do some magical and popular form of physical therapy called Pilates Rehabilitation.
Did she actually say exercise? She obviously doesn’t understand my body because it DOES NOT exercise. It can try, but then it hyperventilates and gets sick. Pilates—isn’t that something rich women do with rubber bands? What would I wear? I don’t have exercise clothes…a whole lot of sick-day clothes but not one stitch of active wear. And what the on earth is a City North??? This was the crazy stream of consciousness going through my mind as I sat and stared in horror at CK as she got out a business card for AZ Body Mechanics and informed me that she would not see me again until I had gone to three Pilates Rehab sessions. She also told me she would be calling them to inform them of what they will need to focus on with me—she had sent several patients who were physically deconditioned from chronic illness and have seen them benefit from individualized physical rehabilitation. This was code for “it all stops here unless you’re willing to take this big step to help yourself and, by the way, I’ll know if you don’t.”
I numbly nodded at her as she gave me the business card and reviewed a few things for me to work on until I saw her again. I walked out to my car in a daze, feeling the “I have a miracle and will do anything” resolve crumble inside me. I followed her directions and drove across the 101 freeway which, of course, was still in Phoenix but could best be described as a Scottsdale-ish nightlife place filled with swanky restaurants with expensive looking condos on top of them. [Scottsdale is one of the more affluent areas in the valley of the sun…picture people who wear ridiculously expensive western wear and buy rubber spatulas at Sur la Table] In the heart of this setting, much to my dismay, was AZ Body Mechanics: a sleek, trendy-looking exercise studio. I parked my car across the street and stared at it for about a half an hour. I couldn’t physically make myself go inside.
What have I got myself into? My body felt heavy and sick and completely incapable of hauling a load of groceries into my house, let alone performing contortions with giant rubber bands. And this whole Scottsdale-like-thing was soooo not me. I was certain that all I had to do was walk in and announce that I live in a rural area known as Lehi, have twelve chickens and a cow, and I would be promptly escorted from the premises.
I just can’t do this, I said to myself as I felt tears roll down my cheeks. But I had told my laryngologist Dr. DL and CK that I was ready to be better…did I not mean those words? Was my commitment to myself and to them so weak that it would dissolve at the first challenge? I didn’t want to be that kind of person and in that moment decided to change—and was willing to try something new and frightening and uncomfortable to bring about this change.
I did not want to be sick anymore.
I closed my eyes and prayed for strength, then cleaned up my tear-stained face, tried to take a bellow-like breath and opened my car door.
I entered AZ Body Mechanics from the street door, which is really their back door—their reception area being at the other end of the studio, that entrance facing the back parking lot. In other words, I entered the wrong door and walked smack into a bunch of people sliding back and forth on top of table tops that seemed to move on springs. Of course, these are reformer tables used in Pilates but I had no idea. I stood there for an excruciating few minutes until one of the instructors told me, very kindly, to walk through to the back of the studio where I’d find the receptionist. I felt awkward as I weaved my way through people and equipment, my big purse bumping into stuff. I wanted to run out of there and never look back, but gritted my teeth and made my way to the reception area.
My fear and awkwardness ended here, though. From that moment on I was treated with such kindness and understanding! Every single person who worked with me, the doctor to the instructors, massage therapists, and darling receptionists all became my dear and trusted friends. Even though I was coming to Pilates on the ground level, not knowing anything, [who knew it was named after German-born Joseph Pilates, who tore apart an old spring bed to develop the resistance-based exercise known today as Pilates?] I was NEVER once made to feel stupid or uncomfortable. I was invited to come back and visit with the doctor the next day, which was a Saturday. Of course, CK had already visited with the doctor, so this initial visit was very productive, he knowing what I needed and why: my core muscles strengthened to support proper breathing techniques, among other things. Working on CK’s advice, we came up with a program that involved Pilates Rehab and Medical Massages [Myotherapy] that would help me gain strength while loosening and relaxing my neck and upper-body muscles…all the while focusing on proper breathing. My first session would be the following Monday. [I was also given a packet containing informative brochures, as well as one of those blue ice-pack things you stick in the freezer. I distinctly remember thinking what will I be needing that for? I still have this “blue ice-pack thing” and now know EXACTLY what it’s used for…but we’ll go into that later.]
I left this visit and drove directly to Target; I had no clue what to wear. It needs to be completely understood that for the previous fifteen years my body had done nothing but lay on my bed while consuming large amounts of medication and coughing, with sporadic periods of “wellness” where I would frantically try to catch up on my life. There was absolutely no exercise involved what so ever. It was a sad joke in my family, that I had only so many “air dollars” every day and I had to spend them wisely. Exercise seemed like a futile use of these precious “dollars” and exercise clothes were not even on my radar.
I wandered around Target for a while, trying to make myself go into the exercise section, but just couldn’t do it. Every time I tried, I’d break into a clammy sweat and feel dizzy. I ended up buying some cute, but unnecessary, household items and left. When I got home I rummaged through all my “sick day” clothes and finally settled on some sloppy knit pants and an oversized t-shirt. It would have to do.
I was so nervous for my first Pilates session. I arrived early, parking in the back parking lot so I could enter the correct door. I had made the appointment and committed myself to several months of therapy, so there was no turning back now. I knew this was what I needed to do to help myself, yet I was still afraid. We see or read about other people doing brave, hard things and we think they go at it with fearless confidence—not an ounce of self-doubt. This was NOT me. I know to most attending a Pilates session would not seem like a brave, hard thing, but to me it was and I was overwhelmed with self-doubt. How hard will this be? Would they understand just how out of shape I am? Can I really do what they’ll want me to do? I brought up my scriptures on my phone and searched the word “strength.” The first scripture that came up was Philippians 4:13 “I can do all things through Christ which strengtheneth me.” It had been so long since I had felt physically strong; I honestly couldn’t remember what it felt like. I allowed myself to draw strength from these words, trusting that if I had been given this miracle, I would also be given the strength, physically, to see it through.
I went in and was greeted with warm smiles from all the Pilates people. I met my instructor and she took me back to the reformer tables, the area that I had awkwardly walked through a few days before. She began to explain a few things to me when she stopped, probably because I looked scared out of my mind. “I know we’re starting at ground zero with your body, and it’s okay,” she said. “We’ll take it one step at a time and I’ll be with you every step of the way.” This felt like an answer to my prayer—I had someone who understood where I was at. I could gain my strength one step at a time and with that, I was ready to get to work.
This first Pilates session was one of the weirdest things I’ve ever done. I had to lay on a table that moved back and forth on springs, my body weight creating the resistance—sometimes moving the table by pushing off a board with my feet and other times using pulleys I operated with my arms and legs. It was all complicated and completely foreign and I know I had to look like an idiot. I remember saying over and over to my instructor “you want me to do what?!” I had developed such an entrenched mental habit of telling myself that I couldn’t do anything physical, that my body was weak and sick, that this habit became quite a barrier. CK would tell me over and over—and even have me say it out loud to her—that “I am strong” that “I can do anything I set my mind to.” It was completely outside of CK’s normal scope of treatment to recommend something like Pilates rehab, but also knew because of years of inactivity, I wouldn’t progress quickly to develop correct breathing without core strength. I trusted CK and her “outside the box” approach to my treatment. For the first time I had doctors and therapists telling me I could be healed…it was a miracle. So what if I looked like an idiot.
I did everything my Pilates instructor asked me to do, having promised myself I’d give it my all during these sessions and try to believe in my strength. It was hard and I was a little sore after this first session, but didn’t die . . . that would come later. My instructor told me I did great—she was nothing but positive and encouraging—but she told me that what I just did in this session would someday be my warm-up. That I had a good, strong body that will someday do really hard workouts. This was hard to imagine, but I tried to believe her. I shared this with CK and, of course, she agreed. [I’m so happy to report that these predictions all came true…and then some! Just like CK said they would :)]
I went home feeling much better about all of this Pilates stuff, but then about 2:00 a.m. life got real. I woke up feeling like I’d been hit by a train! [Reference “death” comment above] My whole body ached so badly I could hardly move, let alone go back to sleep. I made my way into the bathroom and took a fist-full of Advil, then remembered that “blue ice-pack thing” I received in my welcome packet. I said a quick prayer of thanksgiving that I had put it in the freezer earlier. I went and got it and placed its wonderful blue iciness on my lower back…and thus began a special bond with my “blue ice-pack thing” that is still going strong. I don’t EVER want to be without it. If it ever “died” I would mourn its loss and give it a proper send-off just like a beloved pet. Speaking of animals, I was still keeping the whole “I have chickens and cows” thing under wraps. Although the Pilates people were incredibly nice, I was still a bit intimidated by their shiny, color-coordinated studio that played Michael Bublè while I worked out and, therefore, unsure as to how they would handle my little “farm.”
As a part of my Pilates rehab treatment, every other week I would have a session of Myotherapy at the studio. The best way to describe this would be an interactive and, at times, very painful massage which for me focused on the upper body and neck. I had never had anything like this and was quite nervous the first time, but the therapist was wonderful and told me exactly what to do. The goal was to loosen the muscles in my neck which were crazy-tight at first, but the therapist had these amazing hands that could turn shoe leather [my neck] into butter. She worked with me on breathing techniques to help me through the painful parts and I always left with a much looser and relaxed neck. Just a side note: any of you moms out there questioning whether to have another child, go and have some “roping” done [a super-de-duper painful part of this therapy] and you’ll quickly remember labor pains, which may guide your decision.
At the same time that I began Pilates Rehab, CK had me begin a weekly regiment of regular massages: I would go to Pilates Rehab twice a week and then schedule in two regular massages per week when they would bring the most relief. This was a huge time commitment but my husband and I worked it out. I need to mention that during this time we were taking care of Rick’s mother in our home. My mother and father-in-law have lived with us since we married and have been a wonderful blessing to our lives and the lives of our children. Rick’s father having passed several years ago, and Rick’s mother’s health declining, her care fell to us—and was quite a lot. Unfortunately, my husband’s health wasn’t good, either, so I somehow juggled the care of these two and was able to do all the necessary therapy. I had so much anxiety about this juggling act, not being one to put myself first. But I had a chance, finally, to become healthy, to not feel like I was suffocating all the time so I had to make it work. On one hand, it was difficult to finally feel a bit of good health, only to have it immediately demanded in the care of others. But on the other hand, I counted it a blessing to have the strength to take care for those I love. There wasn’t much time to celebrate my healing, though.
I found a darling massage therapist who could do these weekly massages at a reasonable rate. CK, always watchful of every aspect of my healing, told me what to tell her to work on. I was a bit timid with my first massage, but after a few Pilate’s sessions and nights with my blue ice pack, I was so desperate I flopped up on her table like a sore walrus and begged her to rub everything. Make the bad man go away! I will stay consistent with my exercise program for a lot of reason, a major one being that I NEVER want to go through this “starting from ground zero” thing ever again. Waking up muscles that have been hibernating for a few decades is some serious pain, but had to be done and is worth it. I just don’t want to do it again….ever.
My life took on a rhythm of Pilates and massage—work and relief—all coupled with this new way of breathing. As I would do the different Pilates exercises, my instructor—per CK’s instructions and her own thorough Pilates training—would have me breathe correctly while doing the exercise. Not only did this provide my body the necessary oxygen to perform the exercise, but would allow my body to learn—thanks to muscle memory—the correct method of breathing three times faster. This was fascinating to me…and also extremely frustrating, because if I didn’t breathe correctly I did the exercise over and over and over again until I got it right. This happened more than I like to admit, but I had my wonderful instructor who encouraged me in every moment.
After about a month with CK and a few weeks of Pilates, I needed to check back in with my pulmonologist and that meant facing…THE STEPS OF DOOM.
They were formidable, steep and, appropriately, gray cement—and I hated them. They loomed over me like a bully’s challenge. They belonged to my pulmonologist—her office complex, actually—and have waited for me at every appointment like a schoolyard threat. I had never tried them, knowing they would win the fight, their prize my precious breath. So it was the elevator for me every time. For the ride up one level to the second-floor office, I was usually accompanied by a fellow patient in possession of a portable oxygen tank, a rattling cough and a few more decades on this earth. That soft voice in my head would compassionately point out my future to me in hopes of preparing me for the inevitable. I always walked out of the elevator feeling doomed.
At this check-up, I wasn’t quite brave enough to take these steps and their challenge, but I did stand at their base and make myself a promise that someday, like all bullies when called out, their threats would fade to nothing as I flew up each ugly gray step and kept my breath to myself. I had hope now, so the elevator ride didn’t bother me at all.
My pulmonologist was delighted with my progress and CK’s thinking outside the box with my care. Having done her residency at MC, she knew the good people I would be working with and trusted them to not only teach me the necessary breathing/vocal tools I needed, but to also be a conduit of sorts—to steer me to those things, like Pilates, that would speed the process up and aid tremendously in my overall healing.
There were a lot of things going on simultaneously, but I understood the need for this as CK educated me on each aspect of my healing. As I would go through the cycle of building muscles and recovery, I felt strength come to my body. I began to see that as I removed mental habits that no longer served me and replaced them with a belief that I CAN do hard things, I felt a lightness and my breathing improved. With correct breathing, my body felt better and stronger…I could do more. As I did more, it was easier to believe in my strength and begin to see myself as a healthy person. This cycle didn’t always go as smoothly as I just described it, really more like fits and starts. And I had a great deal of anxiety to overcome, a big part of my breathing difficulties. But what it began to teach me—and what CK told me often—was that it was all connected: our mind, our spirit, our body were all connected and breath ran it all. They call it the breath of life for a reason and I was just beginning to learn the power of this statement and the tremendous blessing it was to have a thorough and comprehensive approach to my healing.
It would soon all be tested, though, in the form of public speaking, something I particularly dreaded. Anytime I had to do this – give a talk in church – I was left breathless, with blue lips and hyperventilating and as a result, not saying what I wanted to say….so this would be a chance to put all my hard work to the test.
Now that I was in full swing with Pilates Rehab, myotherapy and massage therapy, CK began my vocal exercises in earnest, allowing me to use my newly awakened core muscles. At first, I was extremely skeptical that doing these silly-sounding exercises could change anything for me. But I was so amazed at the difference I experienced just after a few weeks of doing them.
I would begin by doing some circumlaryngeal massages. This consisted of massaging the muscles that run along the outer sides of the thyroid cartilage, then gently moving the larynx from side to side. CK taught me how to find the thyrohyoid space and to very carefully massage this space in a small circular motion. When I first did this, my muscles were so crazy-tight it was hard to feel any space at all, but as my muscles responded to the massaging, my thyrohyoid space increased, relieving pain and bring about an increase of mobility. My daughter gave me some beautiful massage oil that smelled of gardenias to help make this painful yet necessary therapy enjoyable.
Once my throat was relaxed a bit, I would work on my Resonant Voice exercises. The goal of these exercises is to help me produce a strong, rich, “free” voice with reduced muscular effort. CK described it to me as a less effortful, front-focused, easy voice. The first time CK explained this I laughed—none of these words could be used to describe my voice or the effort it took for me to produce it. After years of using my upper chest and throat to breathe, I felt like I was pushing boulders up a mountain to make sound—nothing about it was effortless or easy.
CK would kindly correct my posture [I was a professional sloucher and huncher] and we’d practice bellow-like breathing. When I would feel less resistance in my chest or neck when exhaling, she would have me do some lip trills, then lightly start humming on a comfortable pitch. The goal was to feel a “buzzing” or vibratory sensation in my head bones and facial tissues. This did not happen right away—it took a good deal of work for me to channel my air to produce this feeling. It felt completely foreign and awkward, but once I was able to take my throat out of the mix, putting my lungs and face to work, the buzzing/vibration came and I knew what to work for.
I started practicing the resonant voice by learning how to hum correctly, then chanting made-up syllable of “molm” then going on to a list of “M” words, always going for the effortless buzzy feeling. From words we went to phrases, counting, reading passages and spontaneous sentences, all the while focusing on feeling the energy of my voice for each word. As I practiced phrases, sentences and passages, I noticed that many times my voice would drop off at the end, so I’d watch my breathing while I spoke, where I’d pause for breath and how many words I could say before needing to take a breath. I felt like I was learning to ride a bike all over again, so awkward and strange.
Another group of exercises I learned was the Stemple’s Vocal Function Exercises. This is a therapy program designed to balance and strengthen the laryngeal muscles and balance respiration, phonation, and resonance. Basically, you make funny sounds at different pitches trying to sustain them for a duration of time. To get my mouth in the correct position, CK had me begin doing these through a straw. I thought it was hilarious, but it works great. I bought a box of cute red and white straws and made sure I had one with me everywhere I went. If you’re driving down the road one day and see a middle-aged woman playing with a straw while she drives…it’s me. [Driving is a great time to practice some vocal exercises. You look weird but who cares?]
One of the biggest challenges for me to overcome was clearing my throat. I did it ALL THE TIME, to the point that I didn’t realize I was doing it. CK had me enlist the help of family and friends, having them gently remind me to swallow rather than clear my throat. It took a long time to overcome this, but now I hardly ever do it, having made the habit of swallowing. CK told me that clearing my throat was like rubbing it with sandpaper. That visual helped me to see the tremendous damage that comes from chronic throat clearing. [But I think my husband enjoyed a little too much being the throat-clearing policeJ]
The way I’ve described these exercises make it sound like I just picked it right up after a few tries….so not the case. If any of you have seen the movie The King’s Speech, where King George VI [played by Colin Firth] and his speech therapist [played by the brilliant Geoffrey Rush] go at their vocal exercises over and over and over again…and the King keeps stumbling and painfully gutting through it and the speech therapist so kindly and patiently invites him to “try one more time” …this was very similar to our experience. I bawled the first time I saw this movie—these scenes still bring tears to my eyes as I think of the courage it takes to gain a confident voice…and the kindness and patience CK had with me. It’s so much more than a sound, it’s who we are, what we think and feel about ourselves all wrapped around the many times we’ve failed at producing words that sound like what we are feeling and thinking. Do we try one more time and suffer the humiliation of failure and live another day with the weakness of having no physical/mental/emotional voice? All of these thoughts and questions were going through my mind as I faced one of my biggest challenges: public speaking.
My position in my church was that of Stake Primary President: I was responsible for approximately eight-hundred children and their two-hundred leaders. My responsibilities included many meetings which required me to address large groups of people on a weekly basis. I didn’t suffer from the normal fears of public speaking—having been raised in a church that expects this of their members and kindly trains them from an early age, I was well honed in this area. When given an assignment to speak, I had no problem preparing and conveying whatever information needed to be given to however large a group of people. My problem was my inability to breathe correctly along with vocal cord dysfunction, which, after just a few moments of continual speaking, left me in a state of hyperventilation, hands tingling and cramping, and lips blue and numb. So much of my focus was on how my body would react that very little of my energy was given to what I was saying. Most of my addresses came off as choppy and awkward, having to breathe at unlikely times. I experienced so much anxiety that a good portion of my sentences would end with a voice drop-off. I always felt that my painful delivery was so distracting that the message I was trying to convey was lost on the listener. It was an enormous understatement to say I dreaded every part of public speaking and felt like a complete failure at it.
Thankfully, through the structure of my church, I was blessed with two counselors, a secretary and a music and nursery specialist, all composing my presidency. These were kind, intelligent women who understood everything I was going through and were some of my biggest cheerleaders through my journey of healing. They would take my place in speaking assignments when it was appropriate, but many times it was solely my job to speak. At these times they would be right by my side with water, cough drops, whatever I needed to get me past the hyperventilation. As CK would teach me these vocal exercises, I would share them with my presidency and they became a wonderful source of reinforcement. It was our sad but funny joke that the hardest thing for me to do was to stand, with a bra on, and speak continually. Sometimes my post-speaking recovery would include going to my car and unfastening my bra for a few minutes.
When I first began with CK, having been so ill, I was relieved of all speaking assignments, regardless of the circumstances. But this could only go on for so long, so as I began to improve and become stronger, we set a date for me to take a speaking assignment. It would be a chance for me to put to use all these great tools that CK had taught me. When the time came, I was surrounded by my presidency, each one quietly going through breathing exercises with me, offering encouragement and support. I had to give a talk to about a hundred people at a child’s baptism, standing on an elevated stand, behind a podium and a microphone. When it was my turn to speak, I stood and walked to the podium, taking a deep, cleansing bellow-breath. I looked down into the faces of families all coming for what they were hoping would be a very special, meaningful baptismal experience for their child…and began.
I was super self-aware of my breathing and voice through the first few paragraphs, but then something amazing happened. My breathing felt like it stood up and began walking on its own. I didn’t have to watch it and my mind began focusing on what I was saying, the meaning of what I was trying to convey. My heart and mind, not focusing on breathing or the lack thereof, were given freedom to become a part of the message. I felt whole and in the moment and before I knew it I was done…and I felt great! I could have kept talking for several more minutes without any effort at all. When I turned and went back to my seat, my dear presidency was crying tears of joy for me. When the meeting was over, we went into the hallway and celebrated, jumping up and down, hugging and crying—no need to take my bra off this time J I was able to enjoy meeting family and visiting with people after the meeting…something I could rarely do before. I felt like I had made it over a huge milestone and I couldn’t wait to tell CK all about it.
CK was delighted with my success at public speaking. We both felt it was a major milestone accomplished. Riding on the momentum of this success, it was time for me to face some difficult issues I’ve been trying to avoid—namely, how I saw myself. I was still having major issues with seeing myself as a powerful, healthy person who could speak her mind. The following are several questions that summed up my next challenges:
-Can I truly see myself as a healthy person?
-If others see me as healthy, what will they expect of me?
-Do I have the confidence to say “no” to something without a lengthy explanation?
-Are issues from my childhood still holding me back?
-Now that I have a voice, do I have the emotional strength to use it to express how I feel?
For years my husband and I were the “go-to” people in our church for big functions. This meant that we were often in charge of set-up/clean up/cooking for hundreds of people. When I was healthy I used to enjoy doing these events—many of which were at our home. But trying to struggle through them sick and without breath made each one a death march for me. My husband was healthy and loved serving in this capacity, which made it extremely difficult for me to say no. He would always cover for me when I was really bad, but the guilt would weigh on me—we always worked together on these events. Added to this was the fact that we had his mother living with us, so naturally, all the family functions were at our home since she no longer went anywhere. It was a giant, difficult bundle of guilt and obligation that I was struggling with . . . and it was time to face it.
There were many times that CK and I would discuss some of these questions. She helped me see that having emotional issues weigh on me directly affected my health. Several times when I would come to see her I would begin by telling her of some physical problem I was having—I feel heavy, my breathing is off, I can’t seem to find any energy, everything feels like I’m getting sick. [I kinda sound whiny, huh? I’m sure I was…] Always the first question she would ask me is “What are you holding on to?” or “What do you need to say?” It would stop me in my tracks! “No,” I would say, “this is my body—I think I’m getting sick.” Then she would remind me that it is all connected. If I had an emotionally disturbing experience—big or small—that I feel I didn’t take care of, it’s going to weigh me down, cause my physical being to feel the negativity. I would think through my past few weeks and most always it would go back to some exchange or experience that left me feeling bad. We’d talk about it—do I have power over it or not, and what can I do now to let go of its power over me.
Now, there will always be those times when our bodies just get sick. But to learn this level of self-awareness that allows me to manage my emotions and their effect on me physically, and then find my way from powerless and voiceless to a position of strength was what I needed. To put it simply, there were things I needed to let go of and I needed help.
CK suggested I see a specific hypnotherapist who specialized in guided visual imagery. At first, I was hesitant, but everything CK had me do up to this point had worked perfectly for my healing, so I agreed to go. I saw this therapist three times and my experience each time was powerfully healing. These were personal experiences that would not be appropriate to share publicly, but I will share what I learned about myself:
-That I have the strength and power to save myself from my past.
-That to be myself is enough.
-And that from this strength and acceptance I will have a firm foundation under me.
These might seem like simple things to some, but for me to feel and see myself with each of these points was a life altering experience. My body had made major progress toward becoming healthy and strong and it was time for my subconscious to catch up . . . because it’s all connected.
Having made this progress, I was able to manage my emotions better—see more clearly what I had control over and what I didn’t. Things became easier and more proportionate. For example, if someone asked something of me that just wasn’t right for me to give at the time, I would tell them no—without guilt, shame or a ridiculously long explanation. It was okay for me to manage and control my time and energy because I was worthy of that type of care. I didn’t have to find my worth by doing everything for everyone at a tremendous personal cost to me. This shift in perspective didn’t happen all at once—I had to feel my way through it. But it was so much easier—and felt right—because I could see myself as a healthy, powerful person with a voice.
Since this point in my healing to the present day, I’ve had some great experiences that have proven to me that these points that I learned are healthy and good and allow me freedom…I don’t feel trapped with no voice. I’ve lived so many years feeling physically that I’m suffocating, and emotionally suffocating, as well. Since I no longer feel physically lacking control over my breathing, it’s nice to have that same control over my emotional self. What I say with my precious voice is just as important as the breath I use to produce the words…it’s all connected. As you would imagine, there have also been some learning experiences along the way. I’ve had to establish some healthy boundaries that have been difficult, but oh so worth the effort and pain. Throughout all of this, my husband has been my biggest cheerleader, helping me do “the hard thing” when it came time to say no and set boundaries. He always encouraged me to stand up for myself and speak my mind, making all this hard stuff just a little easier.
Now it’s time for a funny experience about me being strong and standing up for myself…or perhaps I should say “facing the beast?” As I mentioned before, we have cows, chickens, and a dog and I was worried about the Pilates peeps learning about this. I did let the cat out of the bag and surprisingly they all thought this was great! It made me a sort of rock star when I brought them all fresh eggs and raw honey [I got the honey from a neighbor] so I could rest my fear about being kicked out. All the people I worked with at AZ Body Mechanics became dear friends and I love them to this day.
A few weeks ago, of course when Rick was gone, our bull—I’ve named him The Stupid Bull—got out. Our property is a little larger than an acre, so TSB was enjoying himself, destroying our backyard. I called Rick and he told me to not do anything, stay inside, and he’ll be home in a few minutes. So I stood at our back window, fuming as I watched TSB destructively frolic about. But when he started attacking our fence between our property and our neighbors, the Scotts, I blew a gasket! Our dear neighbors are an elderly couple I’ve known my whole life, she had been sick and he doesn’t get around that good anymore. The last thing they needed what TSB to head-butt their fence to the ground and destroy their backyard. Clad in my capris, t-shirt, and trusty flip-flops, I went outside, grabbed the first thing I could see, which happened to be a partially deflated RED soccer ball [yes…I see how stupid this is now…but I was so mad at TSB!] and snuck up behind him and nailed him in the head with the RED soccer ball. I hadn’t thought through my plan past this point [yes…I know that was stupid] so I was just a little shocked when TSB turned, snorted, pawed the ground and charged me.
Maybe some of you have had super-de-duper dangerous experiences where all sorts of things are supposed to be going through your mind…but, instead, your mind focuses on some random thing? So instead of my life flashing before my eyes as I ran half the length of our property with TSB right behind me, all I could think of was “Wow….I’m really running fast! Listen to my flip-flops go. And I’m breathing great! I’ve got to tell CK and the ladies at the gym about this.” I made my way into my back French doors and did a stare-down with TSB for a few minutes, and then he wandered off and started destroying something else.
I probably wouldn’t have said anything to my husband about this, but unbeknownst to me, a couple of neighbor men had seen that TSB got out and were at the end of our property coming to help…and witnessed my super-stupid soccer ball attack. My husband got home about then and with the help of these men, got TSB back in his pen. And, of course, these men told my husband all about my super-stupid soccer ball attack. My husband is one of the most patient and kind men I know, but it took him a second or two to calm down. Then he reminded me that he was so happy that I feel physically strong and that he was so grateful that I feel like I can face hard things and that he’s delighted that I can stand up for myself…but if I EVER do something like this again he’ll not be happy or delighted AT ALL. I agreed.
Attached is a picture of me, armed with my trusty straw, making amends with TSB. My husband took the picture and made me put the straw in my mouth because it deserved some credit: if I’m going to do super-stupid soccer ball stunts then there should be credit given to what has helped me breathe and be healthy enough to survive these stunts….ha! Anyone who reads this, please don’t ever throw a partially deflated RED soccer ball at an angry bull…it’s REALLY stupid. But I have to say there’s some small part of me that is happy that I didn’t feel completely powerless in the situation…even though it was REALLY stupid.
All kidding aside, I’m grateful for CK’s comprehensive approach to my healing and her suggestion to see a hypnotherapist. It allowed me to cover some emotional ground quickly…and it was a good thing because more changes were on the horizon: due to insurance issues my time with CK and Pilates were coming to an end, at least officially. What would be my next steps in healing?
This was a weird and difficult time for me. I’d been under CK’s care for approximately nine months and going to Pilates Rehab for about eight months. [I was still under the care of my Pulmonologist . . . you know, the one with the Steps of Doom] Both of these treatments were being covered by my insurance and like most insurance companies, mine gave me an allotment of visits for these specialists …and my allotment was up for both. CK had taught me all she could; I had the tools and knew how to use them and, as she put it, anything more would amount to nothing more than her being “nit-picky.” Of course, she would be accessible if I needed her, but our formal visits were coming to an end. This was hard for me to process. I had gone down this completely unfamiliar and, at times, frightening path with her “holding my hand” and the thought of letting go made me feel uneasy. Yet I knew the day would come and our last visit was bitter-sweet. She assured me—several times—that she’d be right here if I needed her and, of course, she has. It still makes me feel warm and happy to know she’s “there” for me. Not only did she teach me how to “fix” myself, but has become a loving and trusted friend. I can’t even imagine what my life would be like without what she’s taught me . . . I could never thank her enough!
The other hard thing to leave was Pilates Rehab. The people at the Pilates studio had become like family and it broke my heart to leave. Running the visits through insurance made the cost reasonable, but to pay the entire cost out of pocket wasn’t an option for me. At this time my husband and I were providing almost total care for my mother-in-law, as well as covering her financial needs. Rick and I worked our schedules such that he could cover for me while I went to Pilates and my appointments with CK—usually in the middle of the day while my MIL napped—then I could cover the rest of the time while he worked. At this same time, my husband suffered a horrible and life-altering reaction to a drug—a fluoroquinolone antibiotic—that left him, at times, non-functional. [To this day he still suffers from the effects of this drug and can do about half of what he normally did before he took it . . . and we see this as progress] I remember going from my MIL’s bedside to my husband’s bedside, trying to offer comfort and aid, so frightened and not knowing how I was going to take care of them both. How grateful I was to be healthy at this time.
Sadly, though, money was a big issue when it came to the care of these dear people. My MIL was and had been for years almost solely dependent on us financially. And with my husband’s poor health, he wasn’t able to work but just a little from home. There was absolutely no way we could afford to pay for Pilates, yet I needed to be doing something to continue building muscle strength. Now that I had discovered the world of exercise and experienced what it did for me physically as well as mentally, it had to be a part of my life. CK and I had had many discussions of the lifestyle of a MTD [Muscle Tension Dysphonia] patient [mainly managing stress] so I knew full well the important role exercise played in all this. But what to do?
I knew that whatever I did, it had to be close to home [CK and Pilates were forty-five minutes from my house] due to the demands of caring for my MIL and my husband. I believe it was an answer to prayer that two doors opened up for me: I found a personal trainer who would give me a discount and I found Yoga.
One of my massage therapists [TE] also taught Yoga and had, for several months, tried to get me to come to a class. I had never been to Yoga, never even seen a Yoga tape and so, in my ignorance, thought it was kind of a lame excuse for exercise. If I was going to take the time to do something, it had to be worth it. I WAS SO WRONG!!!! To this day I believe Yoga to be one of the most challenging and beneficial exercises of all the exercises in all the land. TE taught at a studio close to my house and the cost was very reasonable, so I thought I’d give it a try. I figured if it wasn’t much of a work-out, it would at least help reinforce my breathing practices. [Reference “WRONG” statement above] Since I knew so little about Yoga and felt a little unsure of myself, I made my daughter come to the first class with me. This was probably not such a good decision since half way through she had to “step out” because she was laughing so hard at me. But, then again, I’ve been known to do stupid things like throw red balls at angry bulls, so taking my daughter to my first Yoga experience seemed like a great idea at the time. To say I was a “hot mess” would be an understatement, but between my daughter and TE, I made it through my first practice. It was enormously challenging and rewarding and I was hooked! I loved it and decided to attend each week. I knew it was something I could do on my own at home and often did. But there was something so much more in the practice for me to be away from home, with others who were doing their practice, and having the watchful care of an instructor—so I tried to attend a class each week.
The other door that opened for me was finding a personal trainer [JB] who was starting her business and offering a discount. She was a friend of one of my daughters, so I knew her and felt comfortable working with her. I visited with her, giving her a thorough background on everything I had done and why. She did mainly cardio and weight lifting—a different kind of training than Pilates—but agreed to make a specific plan for me. I knew it would all be different but I don’t think I was prepared for just how different it would be.
I know I mentioned before how lovely and beautiful and color coordinated the Pilates studio was, but I just need to say it one more time. It was spotlessly clean, the air conditioning was always set at 70 degrees and they had Michael Bublé and Frank Sinatra playing on the sound system. My sessions were during the middle of the day so often times I had the place to myself, the busy times being before and after the workday. It would just be me and my trainer and Michael and Frank in this lovely, color-coordinated land of Pilates. My daughter would jokingly call me the Pilates Princess and, sadly, all Princesses have to leave the castle at some time and my time had come.
JB rented space out of a small gym in an industrial storage unit area by the railroad tracks. When I got out of my car in the parking lot I could hear the rap music pounding away inside the gym. [Because JB was starting out and renting space in this gym, she had no say in the choice of music, or, much of anything, for that matter] The gym was crowded and hot—a lame excuse of a swamp cooler that never worked—and the music was so loud it required us to shout over it. [Every time JB would turn down the music or change the station, the owner would switch it back to blaring rap . . . I loved her for trying, though]
My first session with JB was just a strength test, to see where I was at. She was impressed by what strength I had gained in Pilates and this helped to ease my nervousness at this change. My second session was like hitting a brick wall. It was so hard! Weight lifting was a completely different type of exercise, mentally and physically. Yet, as I would make my way through the reps, I would remember the different breathing techniques I’d learned and applying them to my lifting helped tremendously.
As I made my way through the first few months and dealt with the soreness—still had my “blue ice-pack thing” and used it all the time—I began to notice some interesting changes. Not only was I gaining muscles I never knew I could have, but I was facing my life differently. The emotional challenges of caring for two sick people were, at times, overwhelming. Yet, I began to see that if I could physically lift a heavy weight, then maybe I could bear up under an emotional weight, as well. The next several months would prove to teach me much in this area.
With weight lifting and Yoga as my main source of exercise now, the weeks took on a different kind of rhythm. My scheduled time with JB for weightlifting was on Monday and Wednesday evenings, so by Thursday I felt like I had been hit by a truck. Yoga was on Thursday evenings, where I could stretch out tired, sore muscles and reinforce breathing techniques. The weekends were much-needed recovery time with my “blue ice-pack thing.” It all felt different and I desperately missed Pilates Princess Land, but I knew I was doing the right thing for my body and breathing with these changes—and it was what I could afford.
As weeks turned into months, I noticed some startling progress. I was doing faithfully my low abdominal diaphragmatic breathing exercises CK had given me and told me to make a part of my life. I noticed, though, that when I would come home from Yoga and do these exercises, I would get dramatically better times than earlier in the day. It was remarkable the difference Yoga made in my breathing. I began to listen and focus more intently on my practice, particularly my breathing. It was also a tremendous stress relief. Taking care of my MIL had become very taxing—I have often wondered how I would have handled this caregiving had I not been on this path of healing. I am certain my health would have failed. It was wonderful to be able to go once a week and “meet myself on the mat” as they say in Yoga and have ninety minutes just for me.
If Yoga was calming and peaceful, then I’d have to say that weightlifting was the opposite. With sweat pouring off me and mind dulling rap music blaring, I would spend an hour twice a week doing lifts I never thought I could do. The gym was filthy and stinky and I hated it…but it was how I could afford a personal trainer. [JB has since opened her own gym which is lovely and clean and freakishly reminds me of Princess Pilates Land and I’m so happy! And goodbye to the awful rap music] Other trainers worked out of this gym and sometimes their clientele were not people you’d want to plop down on a weight bench after…but, again, it was how I could do this.
What the gym lacked in ambiance, JB made up for in knowledge and kindness and enthusiasm. She designed workouts specifically to develop my core and upper body muscles, all to enhance breathing. She would work with me on my breathing, helping me on difficult reps. JB kept close track on my weight and measurements, always with encouragement on progress made. Where Yoga was a happy-feel-good sort of exercise [though enormously challenging at the same time] where you could, literally, go into Child’s Pose for the entire practice and no one would question you . . . perhaps lovingly pat your back and rub some essential oils on your feet, weightlifting, on the other hand, was a little scary. I would often arrive at my sessions with JB early and sit in the parking lot wondering if I could do the workout ahead of me. But I always did and JB always helped me. I could look at a weight and think “I can’t lift that” and then I would lift it . . . like, forty times! This simple, yet powerful lesson began to transfer into my person life.
With caregiving becoming increasingly demanding, I was able to draw on the confidence that came from lifting. When a situation in my life became so hard I didn’t think I could handle it, I would remember all the times in the gym that I lifted something I thought impossible to lift, and I found the inner strength to figure the situation out. This sequence happened over and over and over again. My body was responding well to the lifting, but my mind and soul were gaining equal amounts of strength. I had a funny experience where all this came together at once.
I needed to buy several cases of water bottles from Costco for a family gathering we were hosting. When I was sick this was a particularly difficult task for me. I hated it! I couldn’t lift the things and was always completely out of breath by the time I got them in my car. When it fell to me to get them for this family gathering, my first reaction was dread. But then a little voice in my head reminded me it might be a little different now. As I approached the stacks of water at Costco, pushing my awkward-flatbed-dolly-thing because I needed more than I could fit in a normal cart, that dread came back. When I went to lift a case, though, I had the weird sensation you have when you lift a gallon of milk you think is full, but to your surprise is only half full. I almost slammed the thing into my face it felt so light to me. I set it on the dolly and then stood there, looking around, wondering if anyone had seen what I just accomplished, laughing out loud I was so happy! Then I chucked several more on my flatbed-dolly-thing, wheeled them all through Costco and got them all loaded in my car without breaking a sweat . . . or having to catch my breath. It was awesome.
I’m sharing a picture of me doing squat lifts. In this picture, I’m lifting ninety-six pounds and I did three reps of fifteen, forty-five total. I was so proud of this lift—I didn’t think I could do it, but I did. I know many people can do much more, but for me it felt miraculous. I had made it through some difficult changes in my healing process and was squaring my shoulders to some extremely difficult challenges in my personal life—and I couldn’t wait to tell BR [my pulmonologist . . . you know, the one with the Steps of Doom]. I had a checkup with her soon.
FINAL CHAPTER IN VIDEO