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Lanette

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Disabled? [Jun. 9th, 2008|07:50 am]
Lanette
[Current Mood |determineddetermined]

Was sitting here feeling sorry for myself as I want to head to work so bad and the pain is intense this morning so I'm curled up in a fluffy robe, slippers, and a blanket having just taken all of my medication, waiting for it to kick in so I can get ready for work. I'm actually hungry for once, but it hurts so much to move I'm waiting a few minutes.

Then I realized I WANT to go to work! How many people want to go at all? Let alone want to go even in bad pain enough to wait to feel better and try again? That is really fortunate.


I feel like there is a wonderful reason why I have such a good job. I put in more effort than many people do because I want my job. I've always been hungry for a good job and I am even more as time goes on. How much do you want a good job? I'm willing to do what it takes. Seriously willing to put up with the down sides. I have the kind of loyalty that a company will never return to me. I know it isn't logical, but that is just where I'm at mentally. This job stands between me and that defining "disabled" label that I would hate to take. I'd only take if I had no other choice. If you don't know why that is or think I'm being over dramatic, try using a electric cart in a store for ONE day without standing up. See how you feel at the end of shopping. That is why. You have no idea how badly physically disabled people are treated, especially if you are sick in a way that isn't externally visible. You are treated like a low life or someone who just "isn't trying at all". People laugh and run into you on purpose, or trip over themselves trying to be nice to the point you can't get your shopping done. It's frustrating. I try my best to not be an a$$clown and actually treat all people I see like everyone else. That means if they give body language they would like to talk, I say hi. If they obviously do NOT want to talk, I leave them alone. It isn't hard. Having a cane or wheelchair or using a scooter doesn't mean suddenly you give no body language. I can't imagine how hard it would be to explain THAT many times to people "what happened?". The few times I've had to use them after surgery, I'd weigh dealing with people when using the cart against dealing with the pain and exhaustion of trying to limp along without one and it would be hard to come up with an answer. After trying it a few times I went and started ordering online. You have to PREPARE to go out like most of us will not understand.

You want to know the truth? I am NOT disabled. I am working with significant chronic medically caused pain, which is a disability. Many people who have the label "disabled" are not. Some are. They define themselves as nothing but. Many are not. They are people, individuals, who happen to have a disability that they hate. The disability is not them. It is just something they live with. They aren't clinging to it and letting it take over who they are. Then again, some of them are. Anything that goes wrong, their spirit loses. They take in every challenge at let it wash over their identity. They fall further and further from who they are until all that is left is a victim. So, to summarize, I do not think all people with disabilities are "like me". Some just get further and further from themselves, especially with chronic pain where it is so easy to take more and more narcotics until you can't think, speak, or find yourself. Not everyone is able to isolate their mind at all from the overwhelming aspects of dealing with a physical disability, especially if it comes with pain and limitation of what you can do. I see some people teeter on that edge of it taking over the rest of their life or of them fighting for their identity. I do all I can to tip them towards the fighting side because it gives me hope that it can be done long term. My job doesn't define me, but I'll be da@mned if my pain does. Who are you? Who decides?
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Comments:
[User Picture]From: dove
2008-06-09 03:16 pm (UTC)
I'm certain that, as long as you are capable of deciding where you stand, you'll remain standing. :)
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[User Picture]From: starrynytes4me
2008-06-09 05:57 pm (UTC)
It's so scary to know that I'm capable right now, but if every day was a 9, would I be anymore?
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[User Picture]From: dove
2008-06-09 06:31 pm (UTC)
I don't know. And that's really, really sad. *hugs you tight*
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[User Picture]From: carryaway
2008-06-09 04:15 pm (UTC)
I hear ya. You're doing amazingly well for all that you endure with the pain issue.

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[User Picture]From: starrynytes4me
2008-06-09 05:57 pm (UTC)
Thanks. It scares me whenever it gets worse. I wonder, will this be the time? Will this be the last time I can fight it with any results?
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[User Picture]From: carryaway
2008-06-10 12:49 pm (UTC)
I know what you mean and it's scary. I hope it never comes to that for you or any of us. :-/
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[User Picture]From: omcintyre
2008-06-09 05:52 pm (UTC)
As much as I hate the term "disabled" I finally had to admit to being disabled late last year. I've been living with chronic pain since 1979.. since I was 6. I learned to just work through it. I went to school, went to college, graduate school, had full time jobs the entire time. It wasn't until 2004 that things became unmanageable. I kept trying to work, but my brain and my eyes and my hands just wouldn't function properly. Hard to write code and check code with only a partially functioning brain and eyes that don't see correctly. I changed the kind of work that did and I enjoyed it.. loved it! And then things went down hill fast.. and they keep going downhill.

Everyday I'd rather be working. I'd rather get the enjoyment out of accomplishing something, out of caring for my family and providing for them. But I also realize there is no way I could manage it. I tried going back to work in October/November and all I realized was how limited I have become especially mentally.

I hate when people look at me and see "really fat girl" but can't see the "brain being squeezed into oblivion girl". I could deal with being fat, if that was all, but that's not all that's wrong. I could be using a scooter (and I did for 3 weeks after dislocating my knee after a fall) but I know it's not going to help me. It HURTS to move.. all the time. And quite frankly I avoid doing almost everything that I know is going to make things worse for me. I no longer live a real life, it's just a shadow of a life. I take up space, and rely on other people and have little or nothing to give back, and it kills me inside.

I commend you on being able to continue working and enjoying what you do, lord knows I wish I could. Hopefully you'll never have to be in my position.. I pray no one does.
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[User Picture]From: starrynytes4me
2008-06-09 06:01 pm (UTC)
It scares me every time it gets worse that this will be the time I have to give up working. I'm so afraid of what that would do to my will. I know I have more value than just being part of the workforce, but it helps me feel like I have a normal life, you know? What if every day were pain level 9? I know I'd have to stop. That could happen at some point.

You impress me because despite having serious challenges you are patient, kind, and gentle with other people. You do give back. How many people walk right past others and never see anything beyond what other people look like or can do for them. You definitely DO see and connect with other people. Maybe not as many as you'd like. Maybe not as often as you'd like. Many people in our culture are a total drain mentally and feel entitled to the best, taking everything for granted. You appreciate even the smallest progress that other people don't notice. Don't believe that you have nothing to give back. It isn't true.

I really hope that no one else has to be in your position, but I'm glad you are around. You make a difference to me, and I appreciate hearing from you.
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