Posts Tagged ‘Grief’

Don’t Let The Door Hit You…

Monday, December 31st, 2012

Goodbye, 2012. I will not miss you.

It’s been a humdinger of a year. The last few months have been especially brutal. So much of what has happened has been outside my control; this is always a hard thing for me. Attitude is important, but the fact is, sometimes things are just bad. And sometimes it’s important to be able to say so. So I will: Many things this year have been bad, and I was unable to do anything about most of them.

I am ready for a new year. I will do my very best to fill it with good and wonderful things. I am counting blessings and concentrating on the things I can control.

I want to thank those of you who have stuck around and are still reading this blog! I will try to make it worth your while this year.

RA Superbitch

Tuesday, June 14th, 2011

I don’t even know how to start this post.

Late last night, I learned that one of my favorite bloggers passed away. Her blog, Confessions of an RA Superbitch, was funny, irreverent, and said so many of the things I’d love to be able to say. I don’t know the details of her death. A few months ago, she wrote that there was “some rather scary stuff happening with the RA.” Then one of her friends posted this week that she died peacefully at home with her husband and son. From this, I can only conclude that she died of RA complications.

This has really thrown me for a loop. When I read the news last night, I couldn’t stop crying. I didn’t know RA SB in person; I didn’t even know her real name. I’m not the type to cry when, for example, famous people die, or people I don’t know well. In general, I don’t cry much at all. So my emotional response was pretty intense and unexpected.

I think it’s pretty clear why. RA SB and I were close in age, both had young sons, both taught college. We commented on each other’s blogs because each of us tended to say things that resonated with the other. She even observed once that she, Rheumatoid Arthritis Guy, and I, who are all around the same age, seemed to experience flares around the same time. I related to her. I loved the spunky way she wrote about her illness. And the fact that she probably died of the same disease that I have is just too much for me to face right now. My heart is breaking for her husband and son. Her last post, back in April, broke my heart even then – it’s even harder to read now.

I will miss you, Superbitch. I don’t know what else to say.

Privacy and Pain

Saturday, March 12th, 2011

privacy

 

In this article about Mark Zuckerberg, creator of Facebook, author Lev Grossman describes the early days of the internet as follows:

The presiding myth of the Internet through the 1980s and 1990s was that when you went online, you could shed your earthly baggage and be whoever you wanted. Your age, your gender, your race, your job, your marriage, where you lived, where you went to school – all that fell away.

By contrast, the viewpoint espoused by Zuckerberg, and the concept on which Facebook is built, is “the fact that people yearned not to be liberated from their daily lives but to be more deeply embedded in them.” Today, it’s all about connecting, networking, sharing everything with everybody. You don’t get to be different people in different places – you have one online persona that you present to everyone.

Well, fine, but I don’t really think life works that way. Not all of us want to share everything with everyone, but at the same time, it’s not fun to be left out. So we do a sort of delicate dance between the right to a private life and the desire to be connected to people. Since becoming sick, I have discovered in myself an intense need for privacy that I never realized I had.

This blog is anonymous – my real name is in no way connected to it. This has given me the freedom to talk about my disease and its details in a way that might be of help to others who are going through the same thing, and it’s given me an outlet. But over time, this privacy has eroded somewhat. There are one or two people in my “real life” who have also seen this blog, and I need to be conscious of them when I write. There’s also another problem – I have become “Facebook friends” with several of the people on one of the RA boards I frequent. I have not shared my health issues with any of the people in my professional life, and so I never mention them on my Facebook page. The people from the RA board know this, and so far they have been completely respectful of this boundary. But it does leave me feeling strangely vulnerable – people from my “sick life,” who I have never met, have access to my “real life.”

I’m finding myself at an awkward spot with this right now. I’ve been going through some incredibly painful things in my personal life right now, things that are not about my illness. I have not even shared them with most of the people in my “real life” – just a select few. This blog could be a place to talk about them, if not for those few readers who actually know who I am. The RA boards could also be a place to talk about them, but I’d be concerned that someone might make an accidental remark on Facebook.

I don’t know how to explain why I can talk openly on this blog about the details of my illness but them clam up when it comes to other aspects of my life. When I was first diagnosed with RA, I was completely silent about it for about a year, only telling my immediate family and a few close friends. Maybe I needed the time and privacy for processing. It’s possible that the same thing is happening here. I’ve been reading blogs from others in the chronic illness world who are sharing their struggles more openly than I am right now. Reading them helps me, and I am grateful for them - maybe they are braver than I am? But I’ve also read blog entries by others who are wrestling with the same privacy issues as myself.

Right now, I feel a strong need for an anonymous place to talk about everything, but I am struggling, always keeping in mind that I don’t necessarily have complete anonymity here. The result has been complete radio silence on this blog for a long time.

Darn you, Mark Zuckerberg.

Nope.

Sunday, September 19th, 2010

I’m sorry it’s been more than a month since I wrote.  It’s been a tough time and I’ve been very sad. 

For those of you who were left hanging by my last post, the doctor declared it not remission, but a “near-remission experience.”  My bloodwork did look great, and my symptoms were on the whole SO much better, but joint examination showed that there were still just a few joints that were in a state of active inflammation.  That’s still great, amazing progress for me, and we were both in a very hopeful place.

Then the flare hit.  It began with an IC (interstitial cystitis) flare that wouldn’t get under control and soon triggered a full-on RA flare.  Fevers every afternoon, swollen fingers and knees, brain fog, exhaustion, the whole nine yards.  It’s far from being the worst flare I’ve ever had – the IC was actually much more difficult and painful to deal with this time around than the RA – but it’s not a good development.  Whether I got rundown from the IC or from stress (there’s been a lot of it lately, which I won’t go into) isn’t clear, and maybe isn’t even important.  The point is that I’m back in a bad place now.  I’m also back on prednisone, which I worked so hard to eliminate.  This really broke my heart, especially since it’s not a good step in the battle against adrenal insufficiency, which I was winning beautifully.  On the bright side, the adrenal problem was really caused by long-term daily pred usage.  Since this is intended to be a short-term pred taper, and since my adrenals have recovered almost completely, it’s not likely that it will trigger the same problem again so quickly. 

My Remicade infusion is on Thursday, and I hope it will quiet this down.  I also had labwork done on Friday, so we’ll see if it shows anything new, and talk about medication changes if it does.  In the meantime, I guess all I can really do is hang on.  I’ve been here before, and I can do it.  I’m just disappointed.

My Inner Geek

Thursday, June 17th, 2010

Star-Trek-Voyager-p35

Okay, I’m about to reveal my true geeky nature to my blog readership… any fellow geeks out there?

Lately RA has given me (or forced on me) quite a bit of couch time, and I’ve been using some of it to catch up with reruns of Star Trek: Voyager.  Although I was a faithful follower of Star Trek: TNG, I never got interested in Voyager when it was actually on.  I started watching the reruns somewhere in the middle of the series, and they’ve come and gone on different TV stations over time, so there are still early episodes I’ve never seen.

For those of you not familiar with Voyager, the basic premise is this: The Federation Starship Voyager, while on a mission to track down a renegade enemy ship, is swept by a powerful alien force into a distant part of the galaxy called the Delta Quadrant.  The alien responsible for this promptly dies, leaving the crew stranded.  Traveling at top speed, it will take them 75 years to get back home.  The enemy ship is there too, and the two crews decide to join forces and make the journey together.  (There’s more to it than this, but this is the basic idea.)

Recently, I was watching one of the first-season episodes – the sixth episode, actually, which is titled “The Cloud.”  At the beginning of the episode, the captain, in a log entry, says, “Our journey home is several weeks old now, and I have begun to notice in my crew, and in myself, a subtle change, as the reality of our situation settles in.”  She discusses this with her first officer, and he mentions that the crew is going through a natural grieving period.

I don’t know why, but this really struck me.  A grieving period.  Suddenly, I realized how much Voyager is like life with RA.

In Voyager, the crew’s whole life is suddenly changed by a force outside their control.  They are light-years from the lives they knew, and may never get back there.  They have to learn to coexist comfortably with enemies.  They have limited resources, and need to learn to use them carefully (spoons, anyone?).  The future is a giant question mark.  Their relationships change, too.  In a later season of the show, when the crew finally finds a way to communicate with people back on Earth, they find that some people have given them up for dead and moved on with their lives, while others are still waiting faithfully.  They also form new relationships with each other and with new people they meet during their travels, some of which are stronger than the ones they’ve left behind. 

But what interests me most is the captain’s approach to the mission.  Her primary goal is to get her crew back to the Alpha Quadrant, and she never gives up hope that this will happen.  At the same time, though, she takes advantage of the opportunity to explore this new part of the galaxy, even though doing so sometimes takes them further away from their goal.  She also encourages the crew to make their lives happy and enriching along the way.  They don’t spend every moment focusing on the need to get back home.

Sometimes, especially in the early shows, the crew believes that they have found a way home, and are crushed when it doesn’t pan out.  (This always reminds me a little of Gilligan’s Island.)  As the show evolves, less time is spent on this kind of plotline, and more on the life they have built for themselves in the Delta Quadrant.  And yet, this isn’t accomplished by giving up on the goal.

I’ve often wondered if this is possible with RA.  It seems like the perfect way to be, really.  On the one hand, I never want to give up on the goal of remission.  On the other hand, I don’t want to be so obsessed with it that I miss the opportunity to make my life as rich as possible, right here, right now.  If the Voyager crew had spent all seven of their years in the Delta Quadrant focusing on nothing but getting home, it would have been a boring show.  It also would have been boring if they had given up hope and settled on a nice planet somewhere.

I guess I just wish I knew for sure whether or not I’m going to get “home” someday.  But that’s not the way it works in real life.

Becoming Visible

Thursday, April 8th, 2010

invisibility-cloak

For the most part, my illnesses are invisible.  I’m not in a wheelchair, I don’t need to walk with a cane except on rare occasions, and I don’t have visible deformities.  I’m the type of person who gets dirty looks when I use my disabled parking tag.  There have been huge (massive, really) changes in the way I look since my onset, but only people who knew me before would know that.  People seeing me for the first time would probably just see a fat woman, unless they’re really familiar with the distinctive look of steroid puffiness.  (I find that I can now spot it on other people.)  And although it rankles that most people who knew me before probably just think I’ve really let myself go in the past few years, I appreciate the fact that I can choose whether to disclose my illness or not – it’s not obvious.

But now…

I’ve written before about the fact that I’ve now been diagnosed with adrenal insufficiency.  This is probably a direct result of the RA, in one way or another - whether it’s because of prednisone overuse or because my adrenals have been attacked by the RA isn’t clear at this point.  (Probably the prednisone.)  But the bottom line is that because I have shown no improvement in the two months since it was discovered, I am now on hydrocortisone, and will be for quite some time.  And since adrenal insufficiency is a dangerous thing to have, it means that last night I had to buy one of these:

medic alert  

Yes, I know that lots of people wear these – most diabetics have one, and people with things like peanut allergies wear them too.  But can I be honest here, and tell you how much this step bothers me?  It announces to the world, “Something is wrong with me.”  It takes something private and makes it public.  It takes away a small piece of my choice – I know that I still don’t have to discuss my illness with anyone, but I can no longer pretend I don’t have one.

And yes, most people are pretty unobservant, but I teach piano.  I sit right next to students and they look at my hands.  There is no way they won’t see this.  And I just don’t want to talk about it.  I’ve worked hard to keep my health situation private at work, and I plan to keep on doing so.

I just feel as if another little piece of my “normal” has fallen away.

Yesterday I had a long, long, conversation with my husband (okay, more like a vent TO my husband) about feeling as if there’s a sharp dividing line in my life between the old me (pre-RA) and the new me.  My husband and I have been married for three years and four months, and we dated for two years before that.  Next week marks the three-year “anniversary” of my diagnosis, and for some reason, this made me realize that we are past the tipping point – he has known me for longer with RA than without it.  I wonder if he even remembers me the way I was.  (He tells me that he does, and that he still sees so much of the “old me” in me today – isn’t he sweet?)  But it really, really bothered me to realize that the dividing line is getting farther and farther behind me, and I feel as if all of my achievements, all of the good things about me, are behind it.  I don’t know why, but this bracelet just feels like a symbol of that, a visible daily reminder that I am not who I once was. 

In one of those weird acts of synchronicity that frequently happen in blog-land, I saw this post from RA Warrior yesterday, AFTER this conversation.  And it was comforting.  It reminded me that whatever I am feeling, whatever I go through in this crazy funhouse called autoimmune disease, someone else has been there too, and understands.  And that may not make it all better, but it sure helps.

P.S. – I recently saw a friend that I haven’t seen since the summer, and finally told her about my RA.  She said, “Yeah, you really looked sick last time I saw you - I wondered what was wrong.”  So much for my cloak of invisibility!

The Incredible Shrinking World

Friday, February 26th, 2010

Shrinking world 

This painting, by artist Shia Moan, is called Shrinking World.  It was exhibited as part of a show called Windows On Pain.  In this article, the artist is quoted as saying the following:

“People who live with chronic pain deal very literally with shrinking options in their lives. If and how they can work, exercise, socialise, travel. Usual activities are affected, all subjected to scrutiny: what is possible, what is not? They also speak frequently about not being able to communicate their pain, wearing a mask.”

When I was looking for a picture to go along with what I wanted to write today, I was amazed to find this painting, and that quote. It was exactly what I was trying to express. I literally entered “shrinking world” into a Google images search, knowing nothing about this painting, and up it popped.

I am bored.  Really bored.  So bored that I’ve been neglecting this blog, simply because I have nothing to say.  And the reason I have nothing to say is that my world is shrinking.

This is something I’ve known for awhile, but I became very aware of it a few days ago, when I was on the phone with one of my friends.  I called her because we hadn’t spoken in awhile, and I wanted to know what she’s been up to.  So I listened to her talk for a long time, enjoying her stories about her children and her activities.  Then she asked me, “And what’s new with you?”

Well, what could I say?  Another Remicade infusion, more blood tests, more doctor and physical therapy visits… besides that, nothing much.  I haven’t been anywhere interesting, haven’t been doing anything exciting.  Frankly, I haven’t been doing much of anything at all.  And that realization depressed the heck out of me.

Chronic illness is BORING.  Sure, there are exciting and dramatic moments, like when something unusual pops up on a blood test or a major flare hits.  (Of course, this is a kind of excitement I’d rather do without…)  But most of the time, at least for me, it’s just not that interesting.  Just a lot of exhaustion, lying around, canceling plans, not having enough energy to even think of something new to do.  It gets depressing.  And there’s only so much you can say about it to your friends.  “I’m still sick”  just isn’t that interesting as a conversational topic.

So my world is shrinking.  I don’t want it to.  I keep thinking that it doesn’t have to be this way – while I’m lying on the couch, I could be learning a new language, or listening to great music, or SOMETHING.  But I tend not to do these things.  I don’t know why.

I’m also starting to develop some habits that I don’t like.  One pattern I’ve noticed lately is that whenever I’m getting ready to leave the house, I always say to my husband, “I don’t want to go.”  It doesn’t matter where I’m going – work, a guitar lesson, a party.  Somehow, all the time I’ve spent by myself on the couch has created a sort of social anxiety in me.   It just seems extra-hard to pull myself together, go out and be with people.  When I do go out, it’s a mixed bag.  Every once in awhile, I’m sorry I went – sometimes it means that I’ve pushed myself too hard that day, or that week, and I end up paying for it.  But most of the time, I end up glad I did.  The world seems a little bigger and a little brighter after I’ve connected with people.

Sometimes there’s another kind of backlash.  I went out last week to watch some friends dance in a show.  I used to dance with them.  I had a really good time and really got into the show.  I was able to forget all about my RA for a little while, and started thinking, “Maybe I could do that again…”  This is a dangerous path for me.  The truth is, no, I can’t.  This type of dance is too rigorous, too joint-jarring, and my doctor has said NO quite clearly.  So this kind of thinking feeds my denial, sets me back.  I need to be out in the world, but that doesn’t mean I can go back to doing everything I used to do exactly as I used to do it.

I need to make my world bigger, or at least minimize the shrinkage.  There is too much sameness to my days.

Rebellion

Tuesday, December 29th, 2009

jamesdean

 Buckle your seatbelts… this one will be part pity party, part confessional, part angry rant!

A few weeks ago, I set out with the intention of circling my wagons and writing a series of posts about the many things I do (or don’t do but would like to) to manage life with RA.  So I wrote a post about my organizational tools, and another post about exercise.  But then a funny thing happened.  Somehow, writing about these things (especially the organizational tools) made me depressed.  Maybe seeing it in print made me realize how big a part of my life this RA thing is, and how much I actually resent having to do all this stuff.  (Guess I’m still camping on the banks of that river in Egypt after all – when do I finally get out of that stage?)  And the sad thing is, these two posts were only the tip of the iceberg of the many, many things I need to do to stay well.

So I didn’t just fall off the wagon – I jumped off the wagon, then tipped it over and kicked it, hard.

This is a bit of an exaggeration, since I haven’t abandoned all of my healthy habits.  For example, I didn’t stop taking my pills – but I did get a little careless with the times at which I took them and with the steps I usually take to protect my stomach.  And I went faithfully to my Remicade infusion last week – a really negative experience I’ll write about another time, since I think it set off this whole rebellious phase I’m in.  I’ve been keeping my promise to exercise more, and I’ve also been going to my physical therapy appointments.

But all sorts of other things, big and little, have fallen by the wayside.  I’ve been eating really badly.  I haven’t been keeping my health journal.  I’ve stopped using my neti pot – this was something I started doing to give myself a little extra protection from colds, flu, and allergens, and it really did seem to do the trick.  I’ve stopped putting Refresh PM gel in my eyes at night, which I am supposed to be doing for my Sjögren’s Syndrome.  I’ve stopped eating yogurt to protect my stomach from my meds and have abandoned my fiber supplements.  On my last methotrexate day, I neglected to drink extra water before, during, and after taking the pills, and was completely flattened by nausea, headache, and all sorts of ickiness; ruined the whole day.  And I know better by now.  There are other things too, but this gives you a general picture.

Yesterday was my wedding anniversary, and my husband and I had planned a one-night getaway (without our son) to a resort hotel and casino.  I wore a sexy skirt that was a bit too tight, and knee-high boots that used to be perfectly comfortable before RA.  Boy, did I get to see how things have changed.  I barely made it through dinner before we had to go back to the room so I could change – and what a relief it was to throw on jeans and my Dansko clogs!  But it also upset me a lot.  I remember the days when I could tolerate a slightly-uncomfortable-but-cute outfit.  After that, we went down to the casino and played slot machines and other games, went back to the restaurant for cheesecake, and generally had fun before collapsing in exhaustion around 3 AM.

Things came to a head this morning.  I woke up feeling like a bus had hit me.  Okay, we did stay up until 3 AM – but we also slept until 11!  Hardly a serious sleep deficit.  And the other sad thing was that I didn’t have a drop of alcohol all night.  We also stayed pretty sedentary for most of the night – didn’t go dancing, didn’t walk far, didn’t do anything more strenuous than pushing buttons on slot machines.  So this horrible, hungover feeling didn’t feel… earned. 

The worst, though, came at breakfast.  We went down to the restaurant around noon.  I usually take my pills at 10 AM, and I was really feeling it.  So we ordered our food, and then I decided – stupidly – that since the food would be coming in just a few minutes, I could go ahead and take my pills.  (This is a lesson I thought I had learned early on – I absolutely have to eat before taking the pills.  I guess maybe the lesson needed repeating.)  Well, the food came pretty quickly, but the pills beat it to my stomach, and I started feeling incredibly nauseated, dizzy, and generally awful.  I had ordered French toast, which looked wonderful, but I could barely get the fork to my mouth.  I forced myself to eat some of it and got a glass of milk into my stomach, knowing that it would help, but had a truly miserable half hour before it worked.  And now it’s night, and I’m STILL not feeling well.

Now, this is where the angry rant comes in.  IT ISN’T FAIR.  My “wild night out” was incredibly tame to have caused such suffering.  My husband had the same night I did and feels perfectly fine.  Friends of mine can stay out all night drinking, get hardly any sleep, and yes, they feel crappy the next day - but then it’s gone.  If past experiences are any indication, I will be paying for this for days. 

I just want some NORMAL LIFE.  I want to be able to overindulge at Christmas.  I don’t want to have to do a million little stupid things every day just to keep this body working.  I want to be able to have the occasional night out without so much suffering.  I want to be able to drink alcohol.  I want to tire myself out running around shopping, going to parties, doing all those fun holiday things and just have it be NORMAL TIRED, not bone-crushing pain.  I actually did very little running around this year, and still paid for every minute of it.

I really thought I had made peace with my trade-offs.  I knew that because of the prednisone I am taking, going off my diet for even a short time would have much bigger consequences than it normally would for me.  I had decided that I was okay with gaining extra pounds, and was willing to work hard to take them off when the holidays were over.  I knew that every event I chose to attend meant at least a day of recovery.  But somewhere along the line, I stopped being okay with these things.  I am NOT okay.  I am ANGRY.

 I think this happens to most people with RA once in awhile.  We just get angry, and tired of the whole thing, and start pushing at the boundaries to see where they are.  Some people go farther than I did and just stop taking their meds.  (I’m not talking here about people who choose not to take meds because they want to treat their RA naturally – that’s a whole different thing, and a choice I respect.)  Some people do things like continuing to drink alcohol regularly even though they are on methotrexate or have liver conditions.  My forms of rebellion are smaller than these, and this is why it upsets me so much that they have had such a huge effect.  I NEED all of these little maintenance things, and it really pisses me off.

Anger – another one of the stages of grief.  This is not the first time I have visited this stage, and it probably won’t be the last.  I am tempted to censor this blog entry.  It’s not positive, it’s not proactive, and it doesn’t put a happy face on RA, or make me look particularly strong in my coping.  Anger isn’t pretty or easy.  It is where I am right now, though.  And I did promise that next time I had a pity party, I would invite you!

So here I am, good and angry.  Here I am, paying for every moment of fun I’ve had over the holidays, tallying it up and realizing that it’s such a pitifully small amount of fun for so much angst.  RA SUCKS.  It just does.

*Whew* 

I am still trying to decide what to do about my wagon train.  It has become clear to me that I have to resume my healthy habits.  They were doing more for me than I thought they were.  Maybe I was just hoping they weren’t necessary.  I don’t know if writing about them will just set me off again, or if it will be good for me.  Maybe both?  Maybe this angry phase is necessary to move out of the denial I keep thinking I’m not in.  (Denying my denial?)  Maybe I need to stay with it, move through it.  Maybe it can unblock me, get me writing music again, get me feeling things I haven’t been letting myself feel.  I also know that when I’m in a better place emotionally, I realize that I’m lucky that there are things I can do that actually make some difference in how I feel.  So maybe I will resume writing about the wagon train.

Just not tonight.

The Wakeup Sandwich

Saturday, December 19th, 2009

Porgi amor

Yesterday I accompanied a whole bunch of singers for voice juries.  Juries are basically final exams for music students – each student prepares several pieces, then gets ten minutes to perform in front of the voice faculty while they look intimidating and write things on clipboards.  If you’ve ever auditioned for anything, it’s a lot like an audition – brief but very stressful, and in this case, the student’s grade for the semester is riding on it.  As the pianist, it’s not really stressful for me, except that the singers’ anxiety does tend to rub off.  It’s more a matter of endurance, since it’s a lot of playing for a lot of different people.

Heading into the third hour of juries, I was playing “Porgi, amor” from Mozart’s The Marriage of Figaro.  This is one of the loveliest arias in the soprano repertoire, full of sorrow and love and longing.  So there I was, playing away, and I caught myself thinking very deeply and in great detail about… a sandwich.

A sandwich?  Really?

Okay, so I understand that the RA and the RA meds can interfere with my thinking and make concentration very difficult.  I also understand that the prednisone taper I’m doing probably had a lot to do with the subject matter.  And it was a really GOOD sandwich – prosciutto, fresh mozzarella, roasted red peppers, and pesto on artisan bread.  I also know that most professional accompanists would probably admit to plenty of mind-wandering while playing, especially when they’re playing pieces they’re played hundreds of times with dozens of singers.  (“Porgi, amor” falls into that category for me, as did most of the pieces in yesterday’s batch of juries.)  Some might even take some pride in it – the music is so engrained that they can play on auto-pilot while their minds are completely free to do something else.

But still.  A sandwich?  Doesn’t Mozart deserve better than that?  Doesn’t the singer?  Don’t I? 

My friend Meg, one of the most gifted musicians (and people) I know, has recently started a blog.  The other day, she wrote a post called “Are you HERE, OR NOT… Attention MUSICIANS and EVERYONE ELSE TOO!”  You should really read it, whether you are a musician or not.  It begins with this quote: “I told a student today, look, if you are going to play this piece, you have got to go all the way, give it your all, no holds barred…if you do not want to do this, don’t bother!”  She went on to write about the experience of learning to take the music in fully, breathe with it, listen and connect deeply.  When she was younger, she says, music actually hurt her.

When I was younger, certain pieces of music used to stir up a wild longing in me that I called “howling at the moon.”  In graduate school, I remember being in the listening library late one night when I first discovered an opera that would become one of my lifelong favorites.  At the end of the listening session I rushed from the library, heart pounding, got into my car, and drove around in the middle of the night searching desperately for an open record store because I HAD TO HAVE IT.  I used to make mix tapes of pieces of music that pierced me to the heart – strange, eclectic groupings that crossed all kinds of genre lines.  I would hear a piece and have to make it my own, and it would play in my head constantly, keeping me awake at night.  I didn’t always have the discipline or the patience to work like I needed to, but sometimes I did.  At any rate, I had the passion.

When RA came along, it brought fear with it.  Fear that my hands would become deformed and stop working.  Fear that I no longer had the stamina or energy to do the work I loved.  Some of this turned out to be true – I really don’t have the stamina anymore, and have had to cut back a lot.  Some of it has not yet come to pass – my hands and wrists have only minimal damage – and who knows if it ever will?  But the fear had an interesting effect on me.  Because I was afraid that my music would be taken from me, I launched a pre-emptive strike – and took it from myself. 

I am still a working musician, even if I work a lot less now.  I am still out there, doing things like yesterday’s juries.  My career, though smaller, is by no means over.  But here I am, thinking about sandwiches while the heartbroken Countess from Figaro pleads with the heavens for her wandering husband – “Give me back my treasure, or let me die!”  I have quit before actually quitting.

It’s true that my technique is not what it used to be, and that there are some things I just can’t play anymore.  It’s true that I can’t spend as long at the keyboard as I used to.  Let’s say that my fears come true, and in a few years I am unable to play the piano anymore.  Shouldn’t I make the most of what I am doing now?  Shouldn’t every moment spent doing this work be precious and joyful?  Even if a piece is simple, or even modified, can’t I still play it with everything I’ve got, as Meg describes?

My physical therapist was annoyed that I insisted on playing for three hours yesterday.  She was right on one level – I’m in a lot of pain today, and I know that yesterday set me back – but I made a commitment to the singers and had to honor it.  I have promised her that I will not play at all for the next few weeks, and I will honor that promise because I know that I need to focus on my health right now and not risk permanent damage. 

But here’s the thing – I want it to HURT me.  Until yesterday’s sandwich wakeup call, I wasn’t feeling much of anything about having to stop playing.  I want to feel restless, eager to get back to playing.  I want it to make me work harder at my physical therapy.  I have been shutting myself off from music, not allowing it to move me, and I have been wandering around half-dead.  When I cut myself off from that part of myself, everything becomes flat and colorless, and depression isn’t far behind.  For the next few weeks, I won’t play the piano, but I want to listen to music, breathe it in, sing, move, long for it.  And if the day comes that I really can’t play at all anymore, I don’t want to go gentle into that particular good night.  Music deserves my grief.

This morning I was supposed to go to my water exercise class.  Instead, I decided at the last minute to go see the Metropolitan Opera’s live HD broadcast of Offenbach’s Tales of Hoffman, which was showing at a local movie theatre.  For four hours, I drank in gorgeous music, beautiful scenery and costumes.  And I don’t feel that I fell off my exercise wagon; I can go to the class anytime this week.  My body may need exercise, but my soul needed this.

Thanks, Meg.

Acceptance or Giving Up?

Friday, November 13th, 2009

Stivers-10-8-05-Acceptance

I saw an article posted on an RA discussion board recently.  The headline read, “Acceptance of Chronic Illness Helps People Move On: Hoping for recovery may actually prevent happiness, researchers say.”  The article went on to explain that there is a “dark side” to hope, since it sometimes keeps people from getting on with their lives and making the best of their situations.   

This leads me to a question I have often pondered:  What is the difference between acceptance and giving up?  People use words like “fight” and “battle” to describe illness – as in “So-and-so passed away after bravely battling cancer for years.”  As seen in the example I just gave, “battling” is no guarantee of winning.  Yet society seems to expect it of sick people.  It’s seen as “braver” to “battle” a disease rather than accepting it.  But with a chronic disease like RA, is this really the right idea?

On the other side of things, dealing with RA is often viewed as a grieving process.  Since the disease is progressive, the stages of grief are sometimes visited again and again as we lose abilities.  The five stages of grief, as defined by Kubler-Ross, are denial, anger, bargaining, depression, and acceptance.  I’ve shuttled back and forth between the first four, never quite reaching the fifth.  But the article I just read suggests that acceptance is an important part of being able to move forward.  A lot of other people with chronic illnesses agree, and say that their lives are better and happier since they have stopped fighting reality and decided to adapt instead.

Recently, I was talking with a friend about my RA for the first time.  She was very understanding, since she had known someone with RA.  But when I mentioned that I had a cane now that I rarely use, she exclaimed, “Don’t use it!”  Then she explained that using the cane would send a signal to my brain that I needed it and make me dependent on it.  She talked some more about the power of the mind and spirit to influence the body, and urged me to fight the disease. 

Sometimes I agree with this.  This is why I fought so hard when my physical therapist urged me to begin using wrist braces and a cervical collar.  (Well, that and my denial.)  I also fought the concept of getting a disabled parking permit, which I now use and appreciate.  I fought the concept of buying clunky but comfortable (and expensive!) Dansko clogs, which are now the only shoes I can wear without terrible foot pain.  Did the shoes create dependence? 

My husband would say no, and remind me that I was limping around, unable to walk any sort of distance, until I got those shoes.  He reminds me that all of the adaptations I mentioned came about because they were NECESSARY.  The cane, too, was necessary when I got it.  It isn’t anymore, and it sits in a corner.  Doesn’t that prove that I didn’t become dependent on it?

I don’t know where the line is between “battling” the illness and just plain denial.  I don’t know where the line is between “acceptance” and giving up.  I know that I would like to settle these issues so I can choose a path and commit to it.  Right now there’s a certain amount of waffling around and second-guessing that wastes mental energy.  I think I am afraid of choosing wrong. 

I think that something exists out there that embraces the best of both – accepting the reality of the illness while still hoping and working towards a possible future without it, or at least with a lasting remission.  I have no idea how to get to it.  I know that it’s not much fun for me, going from denial to anger to bargaining to depression and back again.  I’m clear on the fact that it’s not healthy for me to chase pipe-dream “cures”.  I know that whenever there’s a med change and I tell myself, “This time it’s really going to work for good,” the disappointment is sharper when it doesn’t.  I also know, though, that positive thinking is good.

I have no answers here.  I guess I’m just using this space to wrestle with these thoughts.