Myofascial Release As Possible Treatment for Fibromyalgia

Since my diagnosis of fibromyalgia in 2008, I have tried several rounds of physical therapy, several rounds of pelvic floor physical therapy, every level of massage from light to deep tissue, light exercise to weight training. I had also been feeling good despite the pain and decided to take it up a notch. I started weight training in August 2014 because a sales person convinced me that stronger muscles would pull out the tight spots.

Except that my tight spots are not in the muscle, they are in the fascia. The fascia is a thin sheath of fibrous tissue that is found throughout your entire body. I have tight spots in my fascia in every section of my body from my head to my toe. I am in a considerable amount of pain. After a year of weight training, I ended up not being in less pain, but more. I had to quit when I pulled a back muscle that left me in tears and taking medication. Between the meds & massage, it worked its way out only to resurface when I pulled a muscle while laying on my side in bed.

The other day, I happened to see an ad in a newspaper for a physical therapy place that focused strictly on releasing myofascial pain with a method taught by John F. Barnes, PT. Unlike other PT I’ve had, Barnes’ system apparently uses gentle pressure held for much longer periods in order to completely release the spots. I have so many of them I think it will take someone a year to work them all out.

To some degree, I have given up. I’ve been on a couple of kinds of pain medication for years, but they’ve been working less lately. I either have to find another way or I have to change or go up on my pain meds. I don’t really want that. I want the pain gone and I want my life back! I don’t have a life right now. I can’t work because I can’t sleep well enough to be well rested. I’ve worked with this pain, and I was chronically and terribly exhausted all the time. It’s not a life, and it’s not fair to my employers because I’m limited in terms of energy and patience. I’m still often tired, but I have few stresses in my life. My biggest ones are my mother when she falls in or is in pain and the pain I live with.

Even though I felt hopeless, I sent out a couple of emails to physical therapists trained by John F. Barnes in his techniques. If I can be relieved of this pain, I can only imagine what it would feel like: like I’m floating on a cloud instead of the group. Please wish me luck!

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Brief Fibromyalgia Health Update

Some of you know that I have fibromyalgia. It’s not a disease, but a syndrome of problems that results in, among other things, chronic pain, chronic fatigue, and poor sleep. Towards the end of the last year, I began seeing an integrative medicine doctor in the city who prescribed me some supplements.

When I saw him in March, I said I did not think a few supplements were helping so I was stopping them. A month later, I was exhausted again and went back on. Lo and behold, my energy level rebounded in days. I had a follow up recently and told him about this. I also said that what I really wanted to see was an improvement in this chronic pain that I live with.

The pain is both chronic and changes little. Since summer began in earnest with high humidity and heat, I have been feeling worse. Warm and drier is good; hot and humid not so much, unless I’m at the beach. Bitter cold is no good, either. Being warm dressed on a semi-cold day feels nice. And what I mean by nice is a type of weather pattern that doesn’t somehow make my pain worse.

About 10 days ago, I bought a new powder multivitamin that an online integrative doctor sells. My real life integrative doc is friends with online doctor, and I have bought supplements from online doctor’s web site before. I had just finished a packet of multivitamins, but didn’t want to continue doing that. So I bought this powder that tastes very much like Tang.

And ever since I have been taking this multivitamin in my water every morning, I have had a lot more energy throughout the day. Even better than that, I have been able to tackle tasks around the house with ease. When I say ease, I mean that I simply do them after I decide to do them. When you live with pain and fatigue, sometimes the things you want to do don’t get any farther than ricocheting around your brain. After a while, you feel guilty because there are things you should be doing without an ounce of motivation to do them. The vitamins have brought me energy and removed the procrastination. Somehow.

Now the bigger mountain is the one built on pain. My doc suggested I increase one of my supplements called Ribose, which he has claimed has worked to help eliminate persist pain in his other fibromyalgia patients. I will let you know one way or the other. I can tell you know that, if the Ribose does work to eventually eliminate my pain, you will most likely found out when you hear my cry for joy instead of on this blog.

Here’s to hoping!

The Sickness of Anticipation

This morning, I woke up knowing that today would be the first of two days of prep for my colonoscopy on Wednesday. For two days, I will be drinking. A lot. And not the kind of drinking that I want to be doing.

The only food-like substance that will pass these lips is jello. Also in my armory are chicken broth, apple and orange juices, water, coffee, tea, sugar, honey, Gatorade, and Life Savers. Not that I plan on eating the sugar. I think I’ve gotten that covered elsewhere.

I put in call to clarify today’s instructions and make sure I hadn’t screwed things up by taking Pepto last night or Vitamin E on Friday. Once I got the go ahead, I went shopping with my honey to pick up the magnesium citrate, Miralax, and Ducolax that I will need. Oh and a package of baby wipes and A&D ointment. This is gonna be some party.

We got home from shopping with the foodstuffs and colonoscopy prep materials, and I feel like I’ve been gathering the supplies together to make a home-made bomb that I will soon be strapping on for the least fun ride I could possibly hope to be on.

For lunch, I decide to have broth and try out the “island pineapple” jello. I haven’t made jello since I was a child. After I learned about vegetarianism, the thought of gelatin freaked me out. Not even Bill Cosby could tempt me to eat that stuff again. Back then, Bill was Mr. Cliff Huxtable, the father of your friend whom you could trust.

When I opened the package, the sugary pineapple smell surprised me with its intensity. In short order, I had a cup of boiling water stirred in with the gelatin after which I added a cup of cold water and stuck it in the fridge. Mmmm…. jello dinner.

At around 3:15pm, I took the magnesium citrate prep that I had chilled and poured it into a tom collins glass. Over 30 minutes, I drank the so-tart-my-eyes-are-tearing grape liquid. Artificial, overly sweet grapiness at its best. Or worst. Either way. The grape is so intense I feel like it’s left it’s DNA print on my tongue.

This I followed with 2 glasses of water, a glass of iced coffee, and 2 glasses of apple juice. Grape taste DNA refuses to be evicted. Afterwards, I feel bloated like a dead whale’s body decaying on the beach. Now, about four hours later, I am waiting for the magnesium citrate prep to take effect. I fear that I will not be going to sleep for a while once things “kick in.”

The effectiveness of the magnesium citrate prep feels like an IED that I’ve detonated, but one that is taking a really long time to go off. The bloating wears off and a rumbling works its way through my colon. I estimate that the prep has made its way into my descending colon. If I’m right, I’ll be forced to spend time in the bathroom right about when I would normally fall asleep and for at least a couple of hours.

But who knows? My body is notoriously slow at moving things through. My husband Mark and I could eat the same spicy meal, and, whereas he’s on the toilet within 4-6 hours expelling the spice, I don’t have to visit the toilet gods until the next day.

Maybe the toilet gods will take pity on me, let me get to sleep tonight, and then sleep through the night. Maybe my alarm clock will be my body propelling out of bed, mostly asleep, and into the bathroom as a rousing antidote to my phone alarm clock.

Those options both sound so exciting that I simply do not know which one I’d rather choose! (And if you don’t read that dripping heavily with sarcasm, there is no hope for you).

Illness, Alienation, and PTSD – Part 6

Read Part I, Part 2, Part 3, Part 4, and Part 5

The surgery in 1992 that I had for an intestinal blockage was the last of my surgeries for intestinal blockages, but not the last of my intestine and stomach related issues. Since then, I seem to have experienced periods where my stomach seemed to be having intense gas pains that worsened in intensity. When that happens, I follow this protocol:

  1. Take GasX. If it’s actually gas, GasX works like a dream. Tums don’t cut it.
  2. Take Pepto Bismol. This helps with any stomach cramping. If one dose is not enough, repeat one hour later.
  3. In the meantime, get my heating pad out and lay it over my stomach.

Almost every time in the intervening 23 years, this has worked. Mark and I vaguely remember me going to the ER once, possibly in my late 20’s, for stomach pain that would not go away. But nothing serious was discovered because I did not have any further intubations with an NG tube nor any blockages discovered.

So it was with surprise when, on March 1st, I followed my protocol to find that it did not work at all. By the time 9pm came around, an intense pain gripped the right side of my abdomen. It seemed to start near my appendectomy surgical scar and go up to right under my rib cage. When it continued unabated for 30 minutes and I was crying out in pain, I asked Mark to call an ambulance.

I had tried to go to the bedroom, but the pain caused me to curl up in a ball. Any attempts to move my right leg away from my abdomen caused more pain. I was unable to sit straight up, to walk, or to do anything except lay there. I asked Mark to go let my mother know that I was having stomach pains and that we were going to call an ambulance. I was sweating because the only other time I ever felt pain like that was when I had intestinal blockages. I prepared myself for the worst.

I felt terrible for my mother to have be in the same room with me while I was crying out in pain. The pain was at a 10 level, and I could not keep it inside, even if I wanted to (and I wanted to). I knew it was just hitting her in the gut with helplessness and shared empathetic pains, so I told her to go downstairs so that she wouldn’t have to listen to me. She refused to leave until the EMTs were taking me to the hospital.

The one thing about my town that rocks is the speed of the EMTs, police, and fire department when someone is in need of an ambulance. We waited only a few minutes before someone was knocking on our door. I needed help just to get up off the floor and sit on the ottoman. To get me out of the apartment, they put me into a chair and then slid me onto a gurney to take me to Winthrop.

By the time I was being processed in the ER, my stomach started to feel a little better. They gave me some fluids while they had me drink contrast for a CT scan. The results came back showing that no blockages, but that there seemed to be a change in caliber to the intestinal in the mid transverse colon and constipation throughout the sigmoid, ascending colon, and cecum.

I found this odd, but I chalked it up to the smaller opening that they saw in the colon. Even though I had already passed soft stools that day, I felt a kind of straining that I can only chalk up to not having enough room for the intestines to breathe. It certainly wasn’t traditional constipation, and, after the enema, the attending nurse told me that it was odd that there were no hard pieces. I didn’t think it was odd if things could not move through easily enough on their own. I was relieved not to be in pain anymore and to be able to go home.

I was released with instructions to follow up with my primary care, take Miralax for the constipation, and go for a colonoscopy. I met with primary care and her GI specialist that week, but I did not care for his bedside manner. I also did not want to go to a Queens endoscopy center. I wanted to go to a hospital that I trusted.

That weekend, I talked it over with my sister M. She helped me research GI specialists and even came over to the house to visit and to work with me. The next day, I made the appointment with the GI for the following Monday. Once that was done, my sister M then helped me research for a new Winthrop-affiliated primary care doctor. I made an appointment with the new primary care the following Friday. She spent so much time with me, helping me research and select two new doctors, that I bought her a gift that will soon be delivered.

After my release from the ER, I continued to feel uncomfortable. I could feel and hear stool moving through my midtranverse colon. It sounded like things were being squeezed through a smaller opening. I ate small meals and stuck to a low residue diet, but even doing that made my stomach feel hard and uncomfortable. My stomach felt full all day long. I had periodic bouts of pain right under my ribcage. I decided to start taking the Miralax every day and eat a low residue diet. Things went on in this manner for almost two weeks until suddently I could eat normally with no discomfort or full stomach.

I’m still taking Miralax every day, but went down to half a dose a day because stools too loose are a problem in their own right. I’m also having weird twinges and bouts of pain in the area under my ribcage. But now I have to wait. After the appointment with the GI doc, I went to check out and make an appointment for the colonoscopy.

The scheduler first offered me the date of May 12th. May! I said to her, “I have to wait two months to get a colonoscopy? That’s insane!” She then looked again and offered me an April 29th date, which I took. Afterwards, I said to my sister M, “Well, now I know that no one ever has an emergency colonoscopy. You have to wait for that sucker!”

One positive that thing has occurred is that, for whatever reason, going to the ER motivated me a bit to move forward on my writing goals. It felt like a great stone had been moved from a closed entrance, allowing light to enter for the first time. Usually, an ER trip with significant pain like this would have me refusing to move forward on things that are anxiety-producing for me. Work is one of those things that causes a lot of hand-wringing on my part, but that’s a topic for a different series of posts. However, I was able to make a few changes.

I printed out an accountability calendar created by Carrie Brummer, creator and owner of ArtistThink.com. Carrie is an art educator and tries, through her site, articles, and free online classes, to encourage people to explore their creativity in different ways. I printed the calendar out, hung it up on my wall, picked and start date and began writing.and decided that I would start using it mark off the writing that I did. Every day. Across the top I wrote, “Don’t break the chain.” Jerry Seinfeld once told an aspiring comic to write every day and to not “break the chain.” Nothing feels better than checking off that little box and knowing that I am fulfilling my commitment to myself and my writing goals every day, even if it’s just a little bit.

Today is day 13 of that unbroken chain. As a result of recommitting myself to daily writing, I restarted the morning writing exercise that I learned from Julia Cameron’s book The Artist’s Way. She recommends writing three, 8.5″x11″ pages of freehand writing every morning. I found the three page minimum difficult when I tried it last year, so I decided to make it easy on myself and make it a one-page minimum. Yesterday, after spending a working day’s worth of time researching rheumatology docs for my mom, taking her to the appointment, helping her get xrays, bringing her home, filling her RX, getting milk, eating dinner, and coming home, I was exhausted. I could only manage that one page. I was surprised at the depth of what I wrote because, if you had asked me, I would have told you that any thinking at all would be out of the question.

On all the other days, I’ve managed to write that one-page minimum plus more. Sometimes it’s writing for my blog post. Sometimes it’s writing for my stories. Sometimes it’s writing down ideas that I have. WHATEVER it is, I am committed to writing and keeping the writing thing going. When I did that last year, I was so much happier. One day this week, I realized that I laughed and smiled more than I had been lately. I chalk it up to the writing practice. I feel productive.

My trip to the ER could have been paralyzing. For the first time ever, it wasn’t.

Illness, Alienation, and PTSD – Part 5

Read Part I, Part 2, Part 3, and Part 4

The best part of the summer before my junior year in college was getting to spend time at my brother-in-law’s summer house out East on Long Island. The cottage was your typical summer cottage. It had no internal plumbing; you took showers and went to the bathroom outside. Situated near a cliff, you had to climb down a ladder to get to the beach. The waves lapped a dozen yards away. I remember sitting on the beach, enjoying the warm weather, and spending time with my family shortly before I had to go back up to college in Massachusetts.

I did not return at the end of August 1991 as was planned because I was taken to the hospital with stomach pains that turned out to be another intestinal blockage. I remember the doctors saying that they did not want to operate on me if at all possible because it had only been 10 months since my last surgery. Instead, they inserted a nasal-gastrointestinal tube (NG) to see if it could relieve the pressure and, by proxy, the blockage. The NG tube did relieve the pressure and the blockage, and I was able to leave after proving that I could eat and pass things along my intestinal tract.

My joy at avoiding surgery was short-lived, however, and I was taken back to the hospital with stomach pains within a couple of days of going home. Again, the doctors did not want to operate, but they did insert the NG tube. Again, the pressure was relieved, the blockage unwound itself, and I was able to go home after proving I could eat and pass things along. Three weeks after my anticipated return date, I was able to go back to school. I had signed a lease with some college friends starting the prior July, and I returned to my apartment.

I wish I could say that this was the last of my intestinal blockage saga, but it was not to be. Six months later in March 1992, I went to the hospital with stomach pains. The pain of your intestines twisting around themselves is a pain unlike no other. I would never wish this on anyone, not even the worst of the worst. The surgeon who operated on me told me that the kind of pain I experienced is even worse than the pain of childbirth. I was also the youngest patient in the hospital with as many surgeries as I’d had by my age.

My sister M who used to cut hair got me the name of the surgeon through one of her clients, a doctor. The surgeon was the Chief of Surgery at Cambridge Hospital and performed surgery at Mt. Auburn Hospital. Although he has long since moved away, I still remember his cutting humor, his straight talk, and his lack of reassurance. He told me that, even if the surgery was successful, there was no way to guarantee that having a blockage would not happen again. It could happen the next day, in 20 years, or never. I was a wreck. How was I supposed to live my life this way? At any given time, what I had worked for could be taken away, and I could back in the hospital with another blockage and another surgery that would only leave adhesions, ensuring future problems. One of these days, someone is going to find a way to eliminate adhesions. When they do, I will tithe half of my income to them. HALF.

This surgery, like the one in 1990, resulted in my staying in the hospital for approximately three weeks. In addition to the NG tube, Dr. F wanted to perform a certain procedure wherein a weighted balloon tied onto the end of a tube was inserted up through the nose into the stomach. The balloon and tube were to pass through my intestines for a designated number of days until it had gone far enough into my body. During the surgery, Dr. F would arrange my intestines in such a way to minimize adhesions. This all supposedly would help with that since it seemed that adhesions from prior intestinal surgeries seems to the main cause of future intestinal blockages. After the surgery, the tube was cut at the very back of my mouth as far as they could go, and the tube was allowed to pass through in the usual way. I can honestly say that it is a very weird experience to go to the bathroom one day and have to pull a balloon and tube out of your ass.

In some ways, I was much better off than when I left the hospital in 1990. I did not have raging infections; my length of stay was due to the added procedure of the balloon tube that needed time to move through my system. In some ways, I was in a bad place. In my first semester at college, I went from 123 lbs. to 113 lbs. because the Aramark dining hall food was both disgusting and often improperly cooked. By the end of my first semester, I would only eat salad for dinner and then have a shake later that night when I was studying. By the time I was in the hospital this time in 1992, I continue losing weight. They inserted a feeding tube into my neck so that I would at least get nutrition. That didn’t stave off the weight loss, however. By the time I left, I was 100 lbs. I have never looked so ill. My thighs were barely much thicker than my thighs. I once again had to withdraw from college because there was no way I was going to be able to make up three missed weeks of school.

Earlier this year when thyroid medication helped me drop about 5 lbs. quickly, I began to panic. I called the prescribing doctor and told him I was worried about the rapid weight loss. He laughed at me and told me I was the first patient to ever call him to complain. I explained that I was not complaining, but that the rapid weight loss triggered memories of when I was in the hospital. I said, “What do I do? Eat more?”. He laughed and said yes, I can eat more.

After getting off the phone with him, I realized that I have had a fear of weighing too little because of these hospital experiences. I psychologically need to have some meat on me. At this weight of around 120 lbs., any added weight can be seen in the belly area – and I am totally fine with that. But having a ultra-lean body doesn’t really work with my psyche because I want to make sure I have some weight to fall back on if I ever get sick and can’t eat, which is what happened earlier this month. But I’ll talk about that in another post.

~~ End of Part 5 ~~

Illness, Alienation, and PTSD – Part 4

Read Part I, Part 2, and Part 3.

One Friday night near the end of October 1990, I treated my sophomore roomate Pam to dinner for her birthday. We went to a Thai restaurant down the street from our dorm. I remember sitting across from her in the restaurant. While we were at dinner, I started getting stomach pains, and we headed back to the dorm.

After a few hours of this, I went to the emergency room at Brigham & Women’s hospital in Boston. While I spoke to the attending, I speculated that it might be food poisoning as Pam and I had just been out to eat at a new place. He said, “You probably just have food poisoning. If it doesn’t get better, come back to the ER.” Several hours later, I wasn’t any better so back to their ER I went.

I remember being put in a hospital gown on a gurney by myself in a room. At some point, I began vomiting. And that’s how I spent the next 36 hours – alone, on a hospital gurney with severe stomach pains and unremittant vomiting. I am not sure how I got word to my family. I may have called or I may have asked my friends to call. Two close friends, Patty and Christy, came to see me briefly. I called Chris, the guy I had been seeing, and begged him to visit me, just so I wouldn’t have to be alone while I waited for either something to be done or my family to come join me.

At some point on Sunday, the ER staff finally decided to insert a nasal-gastrointestinal (NG) tube. Doing so alleviated both the vomiting and the stomach pain. I was admitted to the hospital, and my mother and sister Madeline came to Boston to stay while I was there.

By Monday, the pain came back. When the surgeons told us they wanted to operate on Thursday, the three of us collectively freaked out. My sister insisted that they operate sooner, and I was hysterical because I could not deal with being in excruciating pain for the next few days. The doctors caved, and I went into surgery on Tuesday or Wednesday.

This was a lifesaving move. Because of the delay in treatment, part of my small intestine had begun to turn gangrenous from the blockage. The surgeon told my mother and my sister that if they had waited another day to do the surgery, I would have died. This was not the first time my mother had to hear this from a doctor. After my appendectomy, my mother was told that I would have died my appendix had burst before they had gotten a chance to open me up.

I didn’t know about that when I was a child, but I learned about my appendectomy close shave after I had my surgery for this blockage. When you hear doctors say that kind of thing about you, you feel like you have barely missed being scraped on the edge of Death’s razor. I couldn’t get those words out of my head – It’s a miracle I lived. I could have died. I came so close. If only. If only. If only….

Because of the gangrene, I had an infection. The first antibiotics they gave me did not work, and a fever persisted. After about a week, they changed medications, and I was on the strongest dose of antibiotics they could give me. The medication worked, but it left me without any good intestinal flora, either. I became completely lactose intolerant. A pat of butter could send me into intense spasms of pain for years afterwards. I spent many years building up the good bacteria because I was not going to live without ice cream for the rest of my life, that much I could tell you. Or butter. Definitely. Needed. Butter.

I had one roommate during my three week stay in the hospital. My roommate, Mary, was in the hospital to have a colostomy bag installed. We spent many a days together, watching commercials on TV, and talking about food. You’ll never hear someone talk about food in such mouth-watering details as from the person who cannot have any. My mother marveled at how we could even stand to look at food, given that we couldn’t eat any.  But it gave us something to talk about and to pass the time. Spending weeks in the hospital begins to feel like months. Years.

In both our cases, our tubes needed to come out, and we both needed to be able to eat food and keep it down. In Mary’s case, she also needed to be able to successfully use her bag while they watched to make sure no infections occurred. My mother and Mary exchanged Christmas cards for many years afterwards, even after I’d long put the stay and my roommate out of my mind.

As a teenager, I counted the years, months, weeks, and days until I could go away to college. My hospital stay seriously interfered with my plans to stay away. I was forced to withdraw from school because I knew I could never catch up after missing the practically the entire month of November away from school. The thoughts of having to go home indefinitely caused me to panic, and my dread of being pitied resurfaced along with my long-buried fears about my body, my health, my endurance, and my ability to support myself in life.

My aunt and uncle drove up to Boston to see me. My father brought them into my room. All I remember is that they either expressed through sighs and sounds or with words that I felt were like pity, and I became enraged. I screamed at them to get out, that I didn’t want to be pitied, and I didn’t want to see them if they were only going to make me feel worse. I already felt and looked awful, with my tubes, hospital gown, and fighting a raging infection. I felt guilty and humiliated and angry, and I cried from the sheer frustration of my situation. When I cry, my nose gets stuffed and runs like I have a cold. I wanted to hide under the covers and disappear.

I remember spending time in child’s pose while on my bed in the hopes that I could encourage the gas to move through my system and come out the right end. I learned that nothing compares to when your digestive system is working properly. It is the most amazing experience in the world because I know what it’s like when it doesn’t. Sometimes I forget. But then life finds a way of reminding me, like it did earlier this month. I ended up in the ER with stomach pains like I have not felt since my last intestinal blockage episode in 1992.  But that’s for later.

As Thanksgiving approached, I asked about when I would be released. They were trying to decide when would be the right time, but I was determined to leave the hospital by Thanksgiving. The very idea of still being in the hospital on Thanksgiving, three weeks after I went to the ER, was unacceptable to state of mental health. There was simply nothing worse, to my mind, than being in a hospital on Thanksgiving. I simply was not going to have it.

Would they have let me go if I could not eat and poop? Of course not. I doubt they would have let me walk out of there. And I was lucky enough that I was able to leave the day before the holiday. But I didn’t go home. I fought with my sister about going home. I wanted to go back to my dorm to rest, and that’s what I ended up doing.

First, my mother and I went to the Registrar’s office at Boston University so I could withdraw for the semester. The day before Thanksgiving was technically the last day that I could have withdrawn without a financial penalty. However, after hearing what I’d been through, the staff member backdated my withdrawal form so that I could take incompletes on some classes and retake others the next semester.

So my mother and sister went back to NY, and I returned to live in my dorm. The school was not going to have time to kick me out of the dorm before the end of the semester arrived, and so, after the semester concluded, I went back home to New York to stay with my parents for the winter break.

~~ End of Part 4 ~~

Illness, Alienation, and PTSD – Part 3

Read Part I and Part 2.

Even though I liked my pediatricians, I feared the doctor’s office. I dreaded getting shots. Often, I was in the doctor’s office because of fever. I seem to remember getting a lot of them. I was also prone to terribly painful bladder infections. The getting undressed and into a robe. Feeling chilled and a bit scared while waiting for the nurse and doctor to examine me. I know readers know what I am talking about, but it’s the sheer frequency from recurrent illnesses and surgeries that had a profound affect on my sense of safety and strength in the world.

The two abdominal surgeries I had when I was eight years old occurred against the backdrop of my frequent visits to the pediatricians’ office. The fears of doctors and illness I already had became exacerbated by the extreme nature of the pain that led to my surgeries where I was necessarily and unwillingly separated from my family.  The separation felt like abandonment, even though I knew they would have been with me if they could.

The chronic exposure to the vulnerability of nakedness, illness, excruciating stomach pains, and surgeries hits you hard in to the core of your being. I learned that I could never trust my body. I didn’t realize until much later that it also meant that I could not trust my self. I learned that could not trust that terrible things would never happen to me. I  feared the future, and felt that safety is an illusion, even if I couldn’t explain it at that time.

I heard the words of comfort my mother uttered as pity, which I loathed. Somehow, I felt worse about my situation instead of better. I decided early to hide how I really felt until there really was no way I could hide it any more, just so I wouldn’t have to hear it – the sound of pity in her voice. I was terribly sensitive to the slightest change in tone in her voice, whether it be anger or anxiety. A pointed expression of fear could send me into an intense state of anxiety. I could hear her fear for my life, and I feared for my own life in response.

For decades afterwards, I had this intense desire to be physically near my friends and family at all times. I think this influenced the jealousies I felt towards friends when I saw them having what I saw as a closer relationship with each other than with me. I have no idea what they thought then. It probably isn’t true, and I didn’t ask. I wasn’t aware at the time of what drove me to have those jealous feelings.

Elizabeth Shue once appeared on the cover of Boston Magazine with the quote, “Vulnerability is my greatest strength.” But what about those of us for whom our vulnerability becomes tied in with our greatest weakness? In my case, it was my body and the feelings that I tried to bury as deeply as possible. How can I mine that vulnerability for art when it brings back the painful experiences that illness has put me through? My unwillingness to dig deep would have forced me to work through the bundle of repressed anxieties, fear, anger, and helplessness. I have worked on it with therapists over the years. But there are some things that cannot be forced.

Going back to school let me nestle myself into a routine where I could occupy my mind. But the intense anxieties I had lived barely under the surface. In one way, anxieties were ever present. In another, I tried to stuff them down deep inside and close them into a box with a lock. Ten thousand locks. My box had many leaks, and they could burst out in in fear and/or anger at any moment. An anger that was driven by a sense of helplessness and rage at the fate I had been dealt.

After my surgeries that I had when I was eight, I prayed to God and swore with all my heart that I would be a good girl if only He would keep me from ever having to go through that again. The promise became deeply embedded into my psyche. After a while, I no longer consciously remembered that promise. But there it was, subtly influencing my behavior for years to come.

~~ End Part 3 ~~