Wednesday, September 12, 2012

Putting Dreams to Rest

(I have been avoiding writing this particular post (and thus, avoiding writing anything here at all) for about a month now. It's a particularly emotional update for me, which can be so scary to put online for everyone ever to read. But here goes.)

Waking up every day with RA is the hardest thing I've ever done. In the last month or so, I have gone from feeling as if every small victory counted to feeling like I have no small victories at all. Living every day in this body is an uphill battle, and a discouraging one at that. Sometimes, after an entire night of fruitless attempts at sleep, I'm so physically exhausted that I lie in bed until 4 in the afternoon. Sometimes it takes that long just to convince myself to get up and face the pain. I'm wearing a pretty dress right now, not because I feel particularly attractive in it (let me assure you, I don't) but because it's so much easier to throw a dress over my head than to try putting pants on for two hours.

In the midst of all of this, I started school once again. While I am thrilled to focus on something besides how utterly horrible I feel, I can't help but miss campus a little bit. Online courses are a WONDERFUL resource for a student like me, but being trapped in my apartment because I can't get up the stairs has begun to bring me down, down, down into the depths of RA depression.

As I try and shuffle through each day, I've begun to think about my options for the future. Because really, what are they?

Before I set off for college, I had so many grand plans for myself. For awhile, all I wanted to was to work with horses and ride every day for the rest of my life. When I learned how snotty and unpleasant the horse industry really was, I put those dreams to rest and moved on with my life. I focused on environmental studies, philosophy, and the ultimate goal: LAW SCHOOL.

Now here I am, five years into my undergraduate degree. I planned to be finished by now, and studying for the LSATs. All my friends have finished and moved beyond the undergraduate sphere. I'm left behind, feeling every day like more of a failure. My student loans pile up, I struggle to keep myself motivated and engaged in schoolwork, and the time drags on.

But what's the point anymore? I have finally, after a fierce battle, admitted to myself that I am completely and utterly unable to find a job. If my pain is so ferocious that it's trapped me in my apartment, how could I ever hold a regular job? How could I be a reliable employee? I searched the student employment ads like a madwoman for weeks before school started. I applied to everything I could find. I sucked it up and went to an interview. I didn't get many responses from my applications, and I didn't get the job. "Work from home" positions are few and far between.

So now, on top of worries about pain, about school, about my own well being, I have piled on additional worries about money. The weight of all these worries is incredible.

I have to face the facts: I am in too much pain to work. My disease is too debilitating. I cannot manage work and school and life with RA. Even after pumping over $3000 worth of medication into my body every month, I'm doing worse than ever. Disability is my only way out.

Admitting that I need to begin the application process for Disability Benefits has turned me into an emotional mess. The admission that I am too disabled to be a normal college kid hit me hard. By recognizing that I need Disability, what else am I recognizing?

I'm recognizing that I may be reliant on the government to pay my bills for the rest of my life. What's the point of a six and a half year undergraduate process when I'm just going to be disabled forever? Why even bother to complete the stupid thing? All I've been working towards is a career in environmental law. What's the point if I can't work anyway? What high-pressure environmental law career track wants a lawyer suffering from RA?

What's the point of keeping a horse? I feel, right now, like I will never ride him. I feel like a terrible horse mom. He's not being neglected, by any means, but he's not getting the attention he needs and deserves. I feel guilty all the time, and I feel constantly judged by the other horsepeople I happen to come across. Uno is truly the love of my life, but he's also an enormous expense and, because of me, a pretty useless pasture ornament. Why keep him if I'm not sure I'll be able to ride again? He deserves a great, happy home where he can learn how to be a useful working animal.

These admissions break my heart. I have never felt so low or hopeless. When my first rheumiversary rolled around, I was full to brimming with positivity and hope. I told myself repeatedly that this would be my year, and I would feel better than ever!!

It's not, and I don't. Physically and emotionally, I've never felt so awful.


  1. I read this after you posted it a few hours ago and have been turning it over in my mind ever since. I don't have any answers. And I don't think I would feel any differently that you do right now. In fact, I'm confident I would exactly the same. I guess the thing that occurred to me as I re-read your post just now is that you painstakingly describe the things you do know about your condition: chronic pain, limited mobility, financial and career uncertainty.
    But what you don't explore here are the possibilities: you don't know what RA therapies or cures may be in your future. You don't know what kind of jobs might exist for an environmental attorney with the passion and intelligence I know you will bring to bear to the profession. You don't know what your new dreams will be if these dreams are put to rest. They could be even better than these dreams - no one knows!
    What I do know is I have encountered many people in my life who would dream to write just one sentence as beautifully, expressively and eloquently as you do. (And let’s not even consider the people who don’t realize that they can’t string together a noun and verb.) What I do know is that the world is always changing and the ways in which we work is also changing. The best thing you can do is to keep up with the changes so when you have that law degree, you will be able jump right in. And what I know above all, is that Uno would certainly not be alive right now had you not rescued him. He was part of a truck-load of newly weaned rescue foals with grim and uncertain futures.
    I know you feel defeated right now. I know your relationship with Uno has been different than you dreamed it would be because of RA. But being different doesn't invalidate it.
    And help is there for a reason. There are people who misuse and abuse assistance, and that has, unfortunately and wrongly, stigmatized many of the people who receive it. Make no mistake - you are not one of those people. Accepting help is not defeat; defeat is giving up.
    The other thing I know for sure is that when you receive this help, and you get that degree, and you have a successful career, and you continue to be a valued and contributing member of the larger community, you will give back in some way to those who will then need YOUR help. The circle remains unbroken.

  2. I wish I knew more of what to say. Your words hit really really close to home for me. I too am in college and dealing with crippling pain every minute of every day for the last 8 years but every day I get up, throw on my dress(pants do hurt too much) and drag my ass to school. I spent 20 years regretting never finishing school so now I am. I will probably never be able to work again. I do get disability and while it's not the easiest thing to get and to accept that I need it, it cushions a little and it makes me feel like someone took me seriously for once. Keep going hon, you don't know what the next 5, 10 years will hold for us, it could be nothing, but it could be really really awesome, and it will make you glad you did. XOXOXO