Grief, pt II

I’d like to spend a bit more time talking about the things in my life that I have lost to fibromyalgia. I want to break this constant cycle of grief that I have been trapped in for the last 12 years.  I hope that by bringing these things out into the light, I can find a way to move past them and continue my journey to a healthier, happier me.

My last post on grief talked about the loss of dreams and the loss of abilities, while there are many other dreams and skills that have fallen prey to fibro, I’d like to talk about something else: hope.

Fibro is a truly wicked disease to be afflicted with. You feel embarrassed by the fact that you’re in pain, but have no “proof” of it. The constant pain keeps you from sleeping (or the lack of sleep causes pain, it depends on how you look at it), and the lack of sleep messes with your mental functions, which cause further embarrassment because suddenly you’re having trouble carrying on conversations or performing “normal” tasks.  Eventually, you fall into a pit of depression, and it’s no simple task to claw your way back out.

For me, all of these things culminated in me shutting myself away from everyone. I stopped working and locked myself in my house. I shut out my family, my friends, and even my husband. I started trying to pretend that everything was fine, I put up a façade because I was ashamed of my pain. The stress of keeping up the façade drained me even further, making me a truly miserable person to be around. The worst part is, at the time I couldn’t see it. I was sure that people just didn’t want to be around me because they didn’t know how to deal with my being sick all the time.

The truth is, they didn’t want to be around me because they didn’t know how to deal with me. It was the way I was dealing with the illness that was pushing people away, not the illness itself. I was almost always angry, grouchy, sad or some combination of the three. I felt trapped in my own skin; I forgot how to truly look at the bright side of things and most importantly, I lost hope.

I look back at the person I was, and I grieve for all the time and all of the chances that I lost and all of the things that could have been. Unfortunately, a great many things have been destroyed by what I allowed myself to become. I would give anything to get them back, to restore them, but the sad truth is, that it just may not be possible. Right now, that grief is the heaviest burden I carry;  perhaps all I can do is let it go, and move on to fight another fight, I just don’t know how.

How do you give up on something when you’re convinced to the core that it can be saved? The strength of my convictions won’t allow me to stop fighting, even if it looks utterly pointless from the outside. I guess all I can do is remind myself that what’s done is done; I can’t change it, but maybe I can make amends by changing myself now.

It’s been a long, hard road, but I have finally found that little golden spark of hope again. I have hope that I will find a new way to use my talents, hope that I will someday have children with the man I love, hope that one way or another, I will beat this disease.

I won’t give up.

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Getting Past the Grief

As promised, I started seeing a therapist last week. Not my most favorite thing in the world, but it wasn’t as bad as I was expecting it to be. The first visit was mostly just an assessment, to see if she thought she could help and to make sure I could stomach being there. I told her all the basics, family background, medical history, I’m sure you get the idea. At the end of the visit, she told me that yes, she feels she can help me (yay!), and she also took some time to explain her theory on fibromyalgia patients.

In her experience, patients who suffer from fibro (or other chronic illnesses), are in a cycle of continuous grief. In a nutshell, we’re all grieving the things that have been taken from us by our illness; every day is a reminder of what we can no longer do, and the grief continues on. This is where she got my attention. I’d never thought of it that way before. I always just assumed I was in some kind of depression, brought on by the fibro itself, but her idea makes sense.

In order to better acquaint myself with this new perspective, I thought I’d try an experiment and take some time to think about all of the things I’m grieving. I know, it sounds like I’m doing the exact opposite of what I described in my plan, but hear me out. My thought is this: if I recognize all of the things that are causing me to be in this constant state of mourning, maybe I can finally let some of them go, rather than continue mourning their loss. Here goes nothing…

One of the things that weighs the heaviest on my mind is the loss of my dreams. When I was 11, I went to a concert given by the local high school’s Chamber Orchestra. The concert was a way of getting kids my age excited about learning to play an instrument; for me at least, it worked like a charm. I was hooked the minute they started playing, and when the violin solo started, I knew exactly what I wanted to play. I remember telling my mom right then and there that I was going to sit in that first chair one day.

Soon after, we were up at the music store picking up my rental instrument. Once school started and my lessons got underway, I drove my babysitter nuts with my incessant and admittedly, dreadful practicing. I worked my little fingers to the bone, and managed to land my first “major” solo the following school year. To say I was thrilled would be an understatement. By the time I reached the seventh grade, I was hounding my parents for my own instrument; that old rental just wasn’t good enough for me anymore. Eventually, they gave in, and we took that sad old violin back to the music store and traded it in for a new, shiny, honey colored “beauty”.

That same year, my school instructor suggested that I take private lessons to help me over the summer, which I eagerly took up. My first private teacher was a violinist in the Virginia Symphony, from her I discovered my next goal: to be a symphony violinist. Of course, I didn’t want to be just any violinist in the symphony, I wanted the chair of the Concert Master. I’m sure I drove my parents crazy with my constant prattling about all the solos I would get and how much money I was going to make.

I got older, and while my finger tips became callused, my beautiful, honey colored companion (who, for some reason became known as “Bob”), picked up some hard-earned nicks and scratches. In high school, I started taking lessons year round; I needed to get ready for my spot in the Chamber Orchestra! I “suffered” through the ninth grade in the “lowly” Concert Orchestra, although I was very proud to be one of two competitors for that coveted first chair. Finally, at the end of my freshman year, I was allowed to audition for the Chamber Orchestra. Not only did I make it in, I made it in as a violinist in the first section; not as the first chair, mind you, but at least I was in the right section.

My lessons ramped up and I went to as many competitions and extracurricular concerts as I could manage. All City, All State, Regionals, Senior Regionals, Festival, you name it and chances are I was in it at least once over the remainder of my high school career. Not to toot my own horn too much here, but I was pretty darn good. I’d be lying if I said I was “the best”, but I was among the top 5 violinists in all of the competitions I attended.

Finally, my senior year arrived. My chance to land that first chair spot that I had wanted since I was in the fifth grade. Disaster. Right at the start of the school year, I over did it and developed tendonitis in my right wrist. I couldn’t play. My orchestra director was less than sympathetic. Rather than saying “Rest up and get better”, he booted me to the second violin section, which to me at the time was just about the worst “punishment” he could have given me.

Not long after that, I was in a car accident that changed the course of my life. In a fit of stupidity induced by teenage invincibility syndrome, I whipped my little Honda Accord around a corner entirely too fast and managed to roll the poor thing end over end no less than three times. In all honesty, I should not be here writing this blog.  That accident should have killed both myself and my little brother. The responding police officer was so stunned that we both made it out alive and with only minor injuries that he told my mom he “couldn’t bring himself” to charge me with anything.

The injuries I sustained in the accident healed, and we all got on with our lives. The wrist problem, however, persisted. I didn’t injure it in the car accident, and I (unhappily) followed the doctor’s advice to let it rest for a few weeks. The pain wouldn’t go away. Convinced that the doctors I had been seeing were all idiots, my mom found a hand specialist for me. That poor doctor ran himself ragged trying to figure out what the problem was. I underwent every single test he could think of: MRIs, EMGs, X-rays, physical therapy, cortisone treatments… Nothing turned up and nothing helped the pain. As a last-ditch resort, I had arthroscopic surgery done on my wrist; it turned up nothing but a teeny tiny cartilage tear. The doctor cleaned up the tear and after a few follow-up visits, sent me on my way, convinced he’d fixed it.

Needless to say, I didn’t play my violin a whole lot my senior year. I managed to make it to all of the school concerts and one or two extras, but it was difficult to play with my body screaming at me that something was horribly wrong.
A few months after the surgery, I started having the same pain in other parts of my body. Long story short, it took another year or so to get diagnosed with fibromyalgia.

In the mean time, I all but gave up playing. I didn’t bother to audition for any of the ensembles or orchestras during college, and I resigned myself to being a has been or rather, a “could have been”. I still have poor old Bob, but he’s gotten rather dusty in his lonely, padded prison. Every now and then, I pull him out and play through a few old workbooks, but my hands have forgotten how to play and it usually just depresses me.

That, my friends, is just one of the things that was stolen from me by this invisible assailant, and I mourn its loss on a near daily basis. Looking at it now, I guess this is actually the story of two losses. Not only do I grieve for the loss of my ability to play the violin, but I’m also mourning the loss of that little girl who truly believed she was going to be “the best violinist, ever”.

This was certainly not an easy story for me to tell, as evidenced by the pile of tissues sitting next to me, but I honestly do feel a bit lighter now that it’s out. Only time will tell if I’ve actually managed to lighten my burden or not, but stay tuned, because I’m not done quite yet. There are more stories to share, as well as the hope of new dreams to replace the ones that have been lost.

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