Straight-up good news

So, there were two pieces of news I thought I would share with you all today –

First, we’ve raised $800. This means that we’re about a quarter of the way there! I…can’t find words to thank the people who have donated enough. I feel so very unworthy of this kind of help, and utterly humbled by the willingness of people to help a friend of a friend, a complete stranger.

Second, I’ve found out that I may be able to stay with a host family. I won’t know for certain until the end of the month, but this would reduce my costs dramatically! I wouldn’t have to pay for a hotel, and I might have the ability to cook myself dinner in their kitchen (though having the energy left to cook after a full day of training with Hudson is an iffy proposition).

Best,
~Kali

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Good news, but hard news

I got my package from the service dog organization yesterday.

It has really brought home to me that this is ‘real’ – that Hudson and I really are going to train together this summer, and I will have this furry friend around to help me.

At the same time, it is bringing something else home – the price tag.

When I applied for the service dog, I really only thought about the price of the dog – 10% of your income or $1,000, whichever was higher.  As I am a student, and have virtually no income, I will be paying $1,000.

There are so many things that thousand dollars doesn’t cover.  There’s 3 weeks of training, where I’ll need a place to stay (I’m estimating at $2,500).  $120 of mandatory fieldtrips.  Feeding myself for 3 weeks while staying in a hotel.  Hudson’s equipment, which will be customized to us.  Bedding and toys and food and grooming supplies.

All told, I expect this to cost over $4,000.

The real kicker is this: because I will be in training for 3 weeks right in the middle of the summer, I cannot take a summer job.  I will need a significant amount of time to recover after training, and besides that, Hudson and I will need to get used to working together.

Worse yet, this news comes just a few weeks after I had to pay $2,500 to have my car repaired.  It was, unfortunately, a repair that could not wait as it would only get worse.

I am…doing the only thing I can do now.  I’m asking for help.   Please, if you can help…getting a service dog means the world to me.

Every little bit helps.

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Changing life

In a way, becoming disabled is like being a plant that has been viciously pruned back.  Because of how much is changed, you have to grow in new directions.  Well, that or you sit mulling over everything you’ve lost all day long, but that scenario doesn’t really get you anywhere.

In the past year and a half of being disabled, I’ve tried to find some new equalibrium.  I’ve found that just as hard as it sounds.  There have been big physical changes – crutches, bracing many of my joints, new medications.  There have also been lifestyle changes.  I don’t even try to do things in the morning anymore if I can help it – I know precisely how (un)successful that is.  I wake up at 10:00, but I often don’t get out of bed until 10:30 or 11:00, because I hurt too much until the morning medications kick in.  I’ve learned that I can’t do the same thing for hours at a time, but must break my life into blocks and take breaks to stretch, walk around, get more water, so on.  I take far fewer classes.  I have trimmed down my commitments.

In the end, that leaves a very different world.  I do more crafting than I used to, because I can do that even when my mind is too muddied to think.  Oh yes, the costs of this disability are more than the physical ones. 

Somewhere between the disability and the medications, I’ve lost a great deal of my ability to be mentally sharp.  I have to be ‘on’ for my classes, as I am a law student and law classes are rather infamously taught using the Socratic method (which can be humiliating when you aren’t at your best).  On bad days, just getting to class is a struggle.  Fortunately, I have had sympathetic professors; because I choose to participate more than anyone else in the class (by a longshot) when I am mentally on top of things, they leave me alone when I’m not.  I just have to remember to keep my mouth shut, which I am not very good at.

In the end, learning to live with a disability is learning how your body is willing to let you live life.  For me, it has meant slowing down drastically.  The wild bouncing-off-walls, always doing something Brilly that existed before…can’t anymore.  Everything has to be planned, oftentimes down to stupifying levels of detail.  I have had to let go of control of a great many things in my life.  Ask for and accept help when I would not have before.

It also means a lot more time by myself.  I was quite the social butterfly before I became disabled; I’ve become rather stuck in my house now.  In part because of this, I now have a great many plants.  If I’m going to be stuck inside, at least it can be pretty.

A piece of good news: I’ve been paired with a service dog.  This summer, Hudson will be joining me.  My boyfriend and I are also trying to figure out the logistics of attempting to move in together, while he finishes his PhD and teaches at a college almost 100 miles away.  I can’t be moved away from school, or I will miss a great many more classes than I already do, so he will have to slog all the way out there.  Thankfully, he is willing to do that; I’m not sure what we would do, otherwise.

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Changing Expectations

Perhaps the most difficult part of becoming disabled is the way it changes what you are capable of.

Before I became disabled, I was capable of a lot of things.  I was a camp counselor.  I backpacked around Europe.  I participated in a small local literacy drive.  I was a dancer.  I bartended.  I worked trade-shows, spending all day on my feet.  I made costumes, sometimes hand-sewn.  I was a swordfighter, and a fencer.  I can hardly begin to list all of the commitments I made.

Now…I am involved in one club, instead of the three or four I used to.  I have trouble even making it to just 2 courses, when I used to take 4-6 each semester.  Dinner often happens only because I have someone who comes in and helps me every evening.  I cannot wash the dishes, chop vegetables, vacuum, scrub anything, and the list goes on and on.  To be perfectly honest, on the worst days, I cannot so much as make it to the bathroom unassisted.

The change is…hard.  My body does not work correctly, and that is a hard thing to be confronted with at 25.  We expect that eventually, some day in the far distant future we’ll get old and arthritic, but we really expect our bodies to be basically functional until then.  We do not expect to be looking at purchasing a wheelchair at 25, particularly in lieu of some type of violent trauma like a car accident.

If you had asked me in the summer of 2007 what I was going to do when I got done with school, I would have told you that I was going to be a district attorney.  I wanted to work violent crimes.  I wanted to lock up people who hurt others, get them off the streets, make the world a safer place.

Instead, now I am faced with the fact that I will probably never be able to work a traditional job.  Certainly not in my chosen field – attorneys typically work 50+ hours per week.  Not happening here, where I have trouble making it to 4 1/2 hours of class (after I manage my doctors’ and physical therapists’ and occupational therapists’ appointments).

So then what do we do?  I know several other young, intelligent women who are severely disabled.  We are all, at this point, trying to figure out the answer: what are we going to do, now that we’re grown up and it didn’t go the way we thought?

We don’t want Social Security Disability.  We may find ourselves in a position of needing it, but I can’t begin to express how deeply we do not want it.  However, we often find ourselves with few options.  If you cannot guarantee that you will be well enough to make even a part-time job consistantly, no one wants to hire you.  The fact that you do great work when you are there is overshadowed by how often you can’t be there.  Tele-commuting doesn’t work if part of why you can’t be consistant will for example put you in bed – which my disability certainly will some days.

For me, the distant, faint hope is teaching at a college level.  I would love to be a law professor; I would be happy as a history or pre-law professor, I think.  Of course, given my health it would probably be as an adjunct professor, teaching one or two classes at most.

It is an enormous, and painful adjustment to make – from ‘I want to do something that I think is vitally important to society, which I think I would be very good at’ to ‘With my health being what it is, what can I do?’

When children are asked what they want to be when they grow up, no one says ‘I want to be disabled on Social Security!’

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How I became disabled

It occurs to me that in my first post, I made it sound as if my disability has been some kind of steady process.  This is, for better or for worse, not the case.

What was probably the first relatively major manifestation of my collagen problems showed up when I was 12.  I started tearing the fascia in the soles of my feet.  They called the condition plantar fasciitis because of the inflammation that resulted, but my tearing was exceptionally bad.  I’ve never heard of anyone with a case as bad as mine.  Fascia is the connective tissue that surrounds muscles, bones, and organs.  In the case of the plantar fascia, the part I was damaging, it is actually what supports the arch of your foot.

At any rate, I slowly did quite a bit of damage to joints in my teens and early twenties.  Through frequent sessions of physical therapy, I was able to enjoy some recovery from them – not the total recovery a normal person expects, but certainly regaining the use of my previously injured joints.  I was probably in low amounts of pain constantly; I learned to ignore my body pretty completely by the time I was 20 and had to re-learn to listen to it when I took a yoga class in college.  The yoga class without a doubt prevented a surgery on my shoulder (which would have likely had a poor outcome).  It also kept my joints in general relatively stable for a year, for which I am deeply grateful.

At any rate, things continued in much the same vein – injury, slow and incomplete recovery, continued low-grade nagging from previously injured joints – until August 2007.

I had been accepted into a law school across the country from where I grew up.  I had wanted to go far; I figured, this was the last time in my life when I was certain that all I had to worry about was me – no kids, no boyfriend/husband, no pets, not much furniture (all of which was left with my parents).

Three days before I left, I woke up stiff and sore in my hands and feet.  This scared me; it was not the first time this had happened.  The previous time had been after a severe viral infection – the doctors thought that my immune system had gone into overdrive and started attacking my joints, worst in the hands, but present in many of my joints.

The next day, all of me was sore.

The day after that, I went from sore to truely in pain.

Ever since that day, I have been in constant, unceasing, unremitting pain.  We have tried an enormous arsenal of medications, which at best make the pain bearable.  I have not had a day where I felt no pain since then.  A good day is when the pain is just background noise, present but possible to ignore.  A bad day, well, I don’t make it out of bed except to eat and use the bathroom, and I do my best to sleep as much as possible, because at least if I am asleep, I am not actively hurting.

We don’t really know what happened that August.  I have my suspicions – I believe I developed fibromyalgia.  Fibromyalgia is also known as ‘central sensitization’, which I believe to be a more accurate term.  In recent years, they have discovered that people who experience fibromyalgia actually have some slight differences in their brains, and in their nervous systems.  Fibromyalgia often happens after an illness or an injury – a result of too much pain that sets off the nervous system so badly that the nervous system begins recognizing other sensations as pain.  For me, vibrations are particularly painful.  It has also made me light and sound sensitive – flashing or intense lights will give me a headache, as will sounds above a certain volume or at certain pitches.

At any rate, the whatever-it-was in August 2007 is what actually made me become disabled.  It has continued to worsen, though we do not know why.  I have slowly lost my ability to keep up with ‘normal’ life.

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A purpose, and an introduction

Welcome.

I am Kali.  I answer to a lot of other names, but that one will do for now.  For the record, it’s actually a nickname drawn from my real, given, birth-name – I didn’t just make it up because it would be cool to be named after the Hindu goddess of death and destruction (granted, it is cool, I just didn’t make it up!  I do find it kind of amusing to be connected to a goddess whose name means ‘dark colored, black’ when I am one of the whitest people I’ve ever met)

It is hard sometimes to explain why we do things, but that is what I’m attempting today.  I am starting this new journal because now, I have answers.

To what, you ask?  To the mystery symptoms.

I have Ehlers-Danlos Syndrome, classical type (c-EDS).  It’s a genetic condition; I suppose you could say I have had it since conception.   All my life, I have been told that I must be clumsy because of how often and how badly I have managed to injure myself.  It would be more accurate to say that things that would do no harm to a ‘normal’ person can be devastating to me.  Because of the collagen flaw that EDS causes, my connective tissues are very fragile.

Allow me to illustrate what this means. Your ligaments are all connective tissue; they hold your joints together.  Imagine that your average person’s ligaments are like rope – they’re pretty hard to tear, and they’re good for securing things into place.  Mine would be more like rubber bands – easily stretched out of where they ought to be, pretty lousy at holding the bones together securely, and oh yeah…they snap a lot easier.

So, all of my life, I have easily and frequently sprained, dislocated, subluxated (that’s a partial dislocation), and hyper-extended all of my joints.  I was born with unusually tight joints, so my joints are in relatively good condition for a person of my age with EDS.

Sadly, that does not in the end mean much.  I am still, at 25, disabled.  I walk with crutches or a cane, because my hip and back trouble me if I do not.  I am in chronic, severe, unending pain.  Between the pain and the medications to manage it, I am nearly always fatigued.

My diagnosis is recent.  On January 30, 2009, I finally received a definitive diagnosis.  I had suspected EDS for several months at that point; I had been told I probably had it by a rheumatologist, and told that I definitely didn’t by a geneticist (but I kind of ignored that since he didn’t pay any attention to anything I said).

This is year 1 for me.  Not of being sick/disabled – I have had joint problems since I was in my teens, and abruptly became very ill in August 2007 (from which I have never recovered – we suspect that I developed fibromyalgia at that point).  But year 1 of knowing why.

There is a lot to talk about.  The reality of having a diagnosis that means that it’s all downhill from here.  My wait for a service dog.  Trying to keep life meaningful when so much is taken away from you.  Disabilities rights and accessibility issues.  Law school, where I am in my second year and trying desperately to finish my degree.  The future.  Love.

So welcome.  It’s a bumpy ride, but there’s room for you to join me.

But first, a few ground rules.

1) Don’t say that there’s a reason for this.  No.  There is no reason for a person to have this kind of suffering.  This is not a point I’m willing to argue.  Just don’t.

2) If you do know who I ‘really’ am, kindly stick to calling me Kali or Brilly or BMBB – something drawn from the name of this journal.  I do not want my ‘real’ life to find this journal, so I am trying to keep it very separate.  Respect that.

3) Play nicely in the comments.  Don’t start flamewars.  If I ask people to stop dogpiling someone, no matter how much you think they deserve another comment, restrain yourself.  You are welcome, nay encouraged!, to disagree with each other, but do it politely.  I will remove comments I think are inappropriate, and if I need to, I’m sure I can figure out how to ban people.  In general, you’ll get two warnings, but if it’s something particularly egregious, you might not.

4) Like Aretha says, R-E-S-P-E-C-T.  I’m not asking for much – no name calling, no insults, no personal attacks.  Got it?

Right, now if I could just figure out how to get this car in gear…

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