Posts Tagged ‘Disability’

Butt on Bench

Friday, January 18th, 2013

(This title will make sense to you in a little while, I promise!)

Today I read this great post over at The Seated View. Lene writes about her goal of writing a book, and how to balance that goal with the realities of chronic pain. One of the goals I’ve set for myself this year is to write more, so this post came at just the right time for me.

About a decade ago, I read the book “The Artist’s Way” by Julia Cameron. The author talks about the practice of writing “morning pages” – three pages a day of free, uncensored writing done longhand first thing in the morning, a pure spill of thought/emotion onto the page. (Lene refers to a similar practice described in “Writing Down the Bones” by Natalie Goldberg, another book I’ve read.) This was before I had RA, so I was able to do the morning pages with no issues. A few years ago, I revisited “The Artist’s Way” and tried to do the morning pages, but found that there was just no way my stiff wrists would let me write three longhand pages first thing in the morning. The author was very clear on the importance of writing longhand, pen on paper, to activate the creative flow. So I wrote to her and asked if she had any thoughts on how to adapt this exercise for someone with a disability. I never got an answer.

Lene writes, “So what’s a writer with chronic pain to do? You mess with the rules to find a way that works for you.” And she’s right. I think this is something I haven’t always been willing or able to do. But I’m working on it now. When I set my writing goal at the beginning of January, I made a list for myself of different types of writing tasks and different ways to do them. This gives me options on days when I’m not doing as well, so at least I can do SOMETHING every day.

Lene also talks about the Dorothy Parker quote: “Writing is the art of applying ass to seat.” Which brings me to one of my other goals:

P1060148

 

The pianist’s version of Ass to Seat – what I like to call “Butt on Bench.”

Operation Butt on Bench has been going on for several months now. Before that, I was engaging in all-or-nothing thinking about my practice. I used to practice for at least three hours a day, and that hasn’t been possible for a long time – so I stopped practicing at all. For a professional musician, this isn’t acceptable.

So now my butt is on the bench every day, for ten-minute blocks. If it’s a bad day, I only do one block. Even on a good day, I take it easy – I am focused on building stamina slowly and carefully. What I do when my butt is on the bench also varies. For the first block of the day, and whenever I am having a bad day, I practice in exteme slow-motion. (This is good for the brain and the body, anyway – slow practice is highly recommended by a lot of musicians.) On a really bad day, I might study a score, watch YouTube videos of other pianists, or listen to recordings instead of playing. The point is to spend time being a musician every single day, for at least a little while.

It takes discipline for me to do this. It actually takes two different, opposing kinds of discipline. The first is the discipline of getting my butt on the bench when I don’t feel like it. The second is the discipline of getting my butt OFF the bench so I don’t injure myself or get into a flare. Both of these things are a real struggle for me.

Anyway, I’m grateful to Lene for sharing her thoughts. And I can’t wait to read the book that I KNOW she’ll finish.

Two Graduations

Friday, May 20th, 2011

P1020838

As some of you know from reading this blog, I completed my doctorate earlier this year. This week, I attended my official graduation ceremony (pictured above). It was an incredible day on so many levels.

There were times when I thought it would never happen. I entered my doctoral program as a young, healthy single woman. I left it as a married woman with a child and RA. In many ways, my memories of my years as a doctoral student are inextricably tied with my journey with RA. I struggled with the label “disabled,” fought against the idea of using the disabled services offered by my university. This struggle lasted right up to the end, when I accepted a disabled parking permit for my graduation day but still insisted on walking in the ceremony itself, instead of taking disabled seating. I also did something foolish – at the end of the ceremony, my friends got impatient with the logjam at the steps leading down from the bleachers where we were seated, and opted instead to jump down the bleachers themselves. I jumped with them, and paid for this decision with two days of pain. Maybe this was worth it for the chance to feel like a regular, non-sick person for a day. Or maybe it just shows that on some level, I still wrestle with denial.

Either way, I am still amazed that I made it. I was diagnosed with RA and also got pregnant during my first year in the program. I had to learn to slow down, pace myself, accept the reality of a later graduation date than I had originally anticipated. I learned to use voice-activated software and used it to write a large chunk of my 227-page dissertation. I also had to balance all of this with taking care of a baby. Nothing went quite the way I planned it – but I finished, and now my son calls me Doctor Mommy. :-)

There was also a second graduation in recent months, one that was a little harder to take. I graduated from this:

new disabled temp

 …to this:

new disabled perm

Logically, I know that this is a good thing. With the temporary permit, every six months I had to deal with the logistics of getting the documentation from my doctor and then endure a miserable, frustrating trip to the DMV, plus pay a fee. Now I can renew by mail in two years, without having to provide any more documentation or pay any money. But still, the idea that I am “permanently disabled” is hard to swallow.

The reason this came to pass is that the law in my state says that a person cannot have more than six consecutive temporary permits. The fact that I have means that I have been using disabled parking permits for three years now. That, too, was hard to face. I really never stopped thinking of myself as “temporarily” disabled; I guess the state sees it differently. I know that this doesn’t mean anything from a medical perspective, but it was sobering to realize that it really has been that long.

In time, I would like to be grateful for the second graduation and the conveniences it brings. For now, I will focus on celebrating the first graduation.

Is This Remission?

Monday, August 16th, 2010

Question mark

I’m pretty sure the answer is “no,” at least in the way I understand remission.  But these days, I am questioning my understanding of remission.  This is definitely a case in which I’d like to get input from you, my readers who also have chronic illnesses.

I don’t think that I am experiencing a “true” remission.  I am still very much dependent on many different medications to keep me working.  We actually increased my Remicade a month and a half ago (seven vials – yowee!), so I’m definitely not anywhere close to drug-free remission.  That may not be a realistic goal for me, although it sure would be lovely.

But am I in drug-induced remission?  This is what I’m trying to figure out.  If I am, it’s not like I thought it would be.  My idea of remission was one of two things: either I would go back to feeling the way I did before I got RA, or I would feel great, like I do when I’m on high doses of prednisone.  Since I’ve had very little permanent joint damage, those ideas didn’t seem that unrealistic.  But that’s not what I’m experiencing.

Here’s how I am: my bloodwork looks great.  My joints look great.  I haven’t needed a cane in ages, and I’m beginning to feel that I might not need my disabled parking permit anymore either.  I haven’t had a flare that truly knocked me down in awhile now.  I have tapered completely off prednisone and didn’t go into a flare when it was done.  Little by little, I am regaining my ability to do things I couldn’t do before.  I think I really am getting better, but so slowly it’s been hard to notice.  And I didn’t think it would be like that.  I thought that once we reached the right medication combination or dosage, I would see an instant, dramatic improvement.

I don’t really know what’s going on.  I still have fatigue, and I still wake up stiff and take awhile to get moving.  Also, I had a stressful day yesterday, and had what sure seemed like a stress-induced flare today.  Very interesting, since I have never had one – it’s usually doing too much or getting too little sleep that make me flare (or, sometimes, just randomness).  It was a mini-flare, nothing like the flares I’ve had before, but I felt awful this morning, took a long time to get moving, and my left knee is very sore.  Doesn’t being in remission mean that you don’t get flares?

I am seeing my rheumatologist tomorrow, and am interested to see what he has to say about this.  I still think a lot of my fatigue and achiness come not from the RA being active, but rather from the after-effects of the RA having been active for so long.  I am still about twenty pounds overweight, and my muscles have tightened and atrophied over time from disuse.   I am still recovering from adrenal insufficiency.  I also have a few other conditions that have been acting up, like asthma and interstitial cystitis.  Am I feeling mildly crummy because of them, and not because of RA?  Sometimes I forget that there are other reasons besides RA for feeling bad.  

I don’t want to go swimming in that river in Egypt, and I feel that I’m in some danger of doing just that.  But I also don’t want to live life like I’m sicker than I really am right now. 

Your thoughts?  What does “remission” look like?

The “D” Word

Tuesday, February 16th, 2010

handicap

On a lovely warm summer day in 2008, I was sitting in a restaurant with my sister-in-law.  She works at the same university at which I am a doctoral student, and summer classes had just begun.  I was nibbling self-consciously at my sandwich, aware of the 40 prednisone pounds I had gained since she saw me last.  All week, in fact, I’d been painfully aware of those pounds, experiencing again and again the shocked looks on the faces of classmates who hadn’t seen me in a year.  Since I was keeping silent about the RA, I had to live with the knowledge that most of them probably thought I had just let myself go.

My sister-in-law, who did know about the RA, asked me how I was doing.  I told her that so far, I was holding up pretty well, but I was concerned about my upcoming doctoral comprehensive exam.  Not because I was feeling unprepared, but because it would involve close to four hours of longhand writing.  There would be breaks, but still, I didn’t see any way I could possibly do it.

“You need to go register with the office of disabled student services,” she said, matter-of-factly.

Disabled?  Who, me?

“I don’t think those services are for me,” I said.

“Yes, they are,” she said.  “They do test modifications, so you won’t have to do the writing.  You’re entitled to them.  You need to do this.”

So, reluctantly, I went to the office.  They gave me forms and explained that my doctor would need to verify my disability before they could provide services.  So I called my rheumatologist’s office and spoke to his medical assistant.  And I have to admit, I thoroughly expected her to say, “No, those services aren’t for you – you’re not really disabled.”  But she didn’t.  Instead, she told me that this is done all the time for RA patients, and told me to fax her the forms.

About a week later, I was called in to the office at the university to meet with the director of disabled student services.  He stood up to greet me and held out his hand to shake, and it was immediately clear that he was blind.  Feeling embarrassed, foolish, and deeply fraudulent, I sat down in the chair across from him.

“So how can we help you?” he asked me.

I said, “I have rheumatoid arthritis,” and was surprised (and a little bit horrified) to find myself getting slightly teary-eyed.  Still deep in denial, I had said those words out loud to very few people.  I fumbled around for awhile, explaining that since it was still a relatively new diagnosis, I wasn’t really sure exactly what I needed – I had no experience with disabled services.  “A lot of the time, I’m completely fine,” I said.  “It’s just that sometimes, some things are hard to do.  But I don’t think I need much help…”

He was silent for awhile.  Then he said, “I always feel sorriest for students with conditions like yours.”

What?  This blind man felt sorry for ME?

He went on to explain that conditions like RA are hard to manage because they are both unstable and progressive.  Unstable, he said, because they change from day to day – you never really know how you’re going to feel, so it makes it very hard to plan, and also very hard to adjust.  Progressive, because they tend to get worse over time.  Then he told me the story of the degenerative illness that took his sight.  Each time things worsened, he had to adjust to a whole new set of modifications – first, getting larger-print books, then reading with magnifying glasses, then having someone read to him, etc.  Finally, he was completely blind.  “Believe it or not, things got easier then,” he said.  “I knew what the limitations were, and I could make permanent adjustments.  The hardest part was the way things kept changing, and it was kind of a relief when they stopped.”

I had a lump in my throat.

Then he asked me not to think about the days when I was doing well.  “I need to hear about things at their worst.  We’ll make a plan that fits those circumstances, and have it in place for you.  That way, it’s there if you need it, and you don’t have to use it if you don’t.”

I heard myself describing days when it seemed impossible to get out of bed.  I talked about the time when I had to have shots in the soles of both of my feet and couldn’t walk at all for two weeks.  I talked about swollen fingers that prevented me from being able to write longhand, and made typing painful and difficult as well.  I talked about the deep fatigue and brain-fog that made a four-hour exam seem like torture.  It sounded to my ears as if I were talking about someone else, someone who actually needed help.  Someone who just might be disabled.

He described the options available to me, and put all of them into the official plan, to be used as needed.  I was entitled to use voice-activated software for my doctoral exam, and would take the exam in an adaptive lab instead of with the other students.  I would be given extra time to complete the exam, as well as breaks “for fatigue and pain management.”  I also had the option of using a “human scribe.”  (This one seemed bizarre to me – my sister and I later cracked jokes about how she could be my scribe, and I would buy her a funny hat, snap my fingers at her (if I could) and call, “Oh, scribe!” when I needed her.)  If I needed to, I could take the exam over two days instead of one.  I was entitled to record lectures or have someone assigned to take notes for me.  I could even have a research assistant, who would run around the library gathering books for me.  I could get a disabled student parking permit once I got a regular one from the DMV (it had never occurred to me to do this).  I still couldn’t believe that I was actually entitled to these things, that I might actually need them. 

That was when my denial (the other “D” word) began to crack for the first time.  I went home after this conversation and cried for a long time.  I felt all kinds of things – strangely humiliated, sorry for myself, aghast and guilty that the director had felt sorry for me.  Still felt fraudulent, too.  And I was still surprised that it had gone so easily, that both the doctor and the university agreed that I needed all of this help.

The exam came and went, and I did end up using a few of the modifications.  I continued to feel guilty and horrible as I sat in the adaptive lab, using the voice-activated software, surrounded by students whose disabilities were more visually obvious than mine.  I also felt frustrated by how poorly the software worked, how the computer kept freezing up, how little tech support there was for this tiny little lab.  I started to understand that while it was great that the university offered disabled services, they still had a long way to go before things could be considered truly equitable.

Confession time here – I’ve always said this blog will be completely honest:  I am a college professor, and in the past, I felt a secret frustration whenever a student handed me a sheet from the disabled student services office, describing their test mods.  Of course, I always complied, and I believe I was always pleasant and professional about it, but every time I saw one of those sheets, I knew that it was going to mean extra work for me.  So it was hard for me to go to the professor in charge of the exam and give her my sheet, knowing that she, too, might be frustrated by the extra work.  Now, of course, I’m ashamed of those feelings.  (Do you think less of me now?)

A few months later, my sacroiliac joint flared up and I had to use a cane to walk.  One day during this time, I drove to the campus where I teach and couldn’t find parking anywhere except at the bottom of a big hill.  The only way up that I could see was a large concrete staircase with over 100 steps.  I hobbled up the steps with my cane and arrived at the top exhausted and in pain.  The next day, when the situation repeated itself, I found the “accessible” route from that parking lot – a long, winding wheelchair ramp up the hill.  Great for people actually in wheelchairs, but the distance was MUCH longer for someone walking.  So, finally, I bit the bullet and asked my rheumatologist to fill out the forms for a disabled parking permit.  And again, I was surprised when both he and the DMV granted it, easily and without question.  Seems denial was still alive and well…

Although my denial still comes out to play fairly often, things have changed somewhat since that time.  I have gotten used to the parking permit, and use it more often than I expected to.  I’m not quite guilt-free about it, so I try not to use it when I’m doing okay, and I still feel weird when people watch me getting out of my car.  I used the free disabled shuttle when I went to the zoo.  And a few months ago, I was in Costco with my toddler and a full cart when overwhelming fatigue suddenly hit.  (Don’t you love how RA does that?)  I went over to the customer service desk, smiled at the person there, and asked, “Is there anyone who can help me get my things out to my car?  I’m disabled.”  No tears in my eyes, no lump in my throat – the word came out surprisingly easily.  And the Costco workers were happy to help.