July 30, 2008
For My Enginerds
"Must be nice to not have to work."
Ok, I'm going to go off for a bit here and I might have to curse a little bit.
I hate when people say that to me. "Must be nice not to have to work" or "Why aren't you working yet?"
Look, motherfucker. I didn't win the lottery so yeah, I do *have* to work. But since I still feel like hammered dogshit most every day, I'm not working yet. I collect disability now and I don't feel bad about it. Honestly, I think I kindasorta earned it.
Also, because when you work in an office, assholes come to work with 105 fevers because it's better to be there than call in sick - or at least they think so. A 105 fever would put me down.
And gross, sick fucking people pick their noses, sneeze, snot rocket, don't wash their hands and then touch things I might touch. Did you know that you have strep germs in your nose? A strep infection KILLED a friend of mine in 3 days. Staph could kill me. Pneumonia could kill me. Heck, a bad cold could kill me. Viruses, germs, fungal infections - no bueno. Welcome to my world of OCD-ness. It's self preservation. It's called immunosupressants. And if that makes me a freak of nature, so be it. I'm still fucking here!
I wish you could spend one day in my shoes to feel the pain that I'm feeling. Or the waves of nausea I get when I take all my meds every day. Or the inability to sleep because of pain, neuropathy, or just whathefuckever reason I can't sleep. Or feel so tired that you sleep nearly all day and all night. The fear of relapse - I'm not even going to think about it, but it lurks in my brain.
I am fortunate that I was able to move in with my parents AT AGE 39 because I couldn't afford to live on my own again, which I had been doing for OVER 20 YEARS when I got sick.
But you know what? I'm here. I'm still here.
I never say any of the stuff I'm thinking. I wish I had some cute, funny answer for those questions, but I don't. I just can't explain it all because I'm tired of talking about it. It makes me feel like I'm speaking whinese.
Mostly. The biggest thing. Is that I would trade it all back in .00025 seconds if I could. I'd go back to my boring job reading about toxic waste in a heartbeat if I could. Just to not have to go through what I did; to not have had to put my loved ones through all of this. My daughter was really tired the other night and was crying. She said she wishes we could go back to our old apartment and have things be the way they used to be. Try being strong through that.
I'm not working. It is what it is. I deal with it. I don't like it, but it's not like I really have much choice.
Ok. I have to go to the docs now. I don't want to, but again. No choice.
I can do this. I have you.
For my enginerds. This was funneh!
Your assignment today is to tell me the clever answers I should give to these annoying questions.
P.S. I love you Goobertox!
Posted by debutaunt at July 30, 2008 11:19 AMI'm sorry that people say things that hurt, but next time the conversation could go more like....
Dumba**: "It must be nice not having to work."
Debu: "Oh it's great! You should quit work and have cancer too!"
Posted by: Yvonne at July 30, 2008 12:29 PMSimple answer-none of your business.
Some people think it is their right to know it is not their right.
Your life, your business
Posted by: claire at July 30, 2008 01:11 PMI love the 'kick it back to 'em' style:
Dumbazz: "It must be nice not having to work."
Smartazz: "Now why would you say something like that to someone, especially when you don't or couldn't possibly have a clue as to why they might not be working?"
Posted by: Bren/Cody'sMom at July 30, 2008 03:17 PMI really like Yvonne's answer. Smart and funny, and still puts them in their place.
Posted by: Crazy Lady in Vegas at July 30, 2008 03:42 PMDeb, I once had a former colleague look at my billiard ball head and say, "Oh I wish I had the nerve to just cut off all my hair too." What do you say? Frankly, nothing. This journey, for me, is about my life and self understanding, as your journey is about your life and your self understanding. I'm not trying to be holier than thou here. But being in pain taught me that I have no threshhold for irritation when I'm hurting. I'm not understanding of others at that time, nor patient. No one who hasn't gone through this has any idea of what it's like to know that death could be years away or around the corner and what it's like to live with utter uncertainty. It's not my job to make them more aware (can't be done anyway). It's my job to come to grips with my circumstance, be kind to myself and, I hope, become more sensitive to others in need because of our common distress. Deb, I'm so sorry you're going through such pain and anxiety. Those of us on your same road know the feeling and stand on the sidelines, urging you on. Do something good for yourself -- enjoy a hot bath, a good book, wonderful music, quiet moments, a loving conversation with Tim. Have peace, my friend. We're all with you.
Deb - there will always be an insenstiive asshole somewhere around. I like Yvonne's answer!
Zoe is such a strong little girl, though she must long for days gone by, she loves you so 'big and hard'.
Hugs from way over here
Fi
Posted by: Fiona at July 30, 2008 06:36 PMThe most efficient retort is obvious:
"Wanna trade?"
When people make comments like that to me, I'm usually very honest about my reply:
"Actually, it's not at all nice to be financially destitute and to be unable to support my daughter without help from outsiders. It's not fun when I get a card or gift or just a little kindness that seems like such a big deal because I haven't been able to see the light in the financial tunnel in so long. It's not great to hear the question 'what do you do' and feel how worthless I am without my work identity. Of course, I'm a stay-at-home mom, which sometimes leads to questions about why I am still needed at home when my child is six years old and in school. It's rather debasing to be unable to provide financially for my child as I rack up thousands of dollars worth of medical bills for my husband to pay. But I choose to see the blessing in being able to spend time with my daughter - time I wouldn't get if I were focused more on getting that new HDTV than on saving my life. Taking care of myself right now means not working, so I choose to feel blessed to have my life and loved ones to share it with. I hope that some day in the future I will be able to return to work in a way that won't endanger my life.
By the end of that conversation, I think they're usually wishing they hadn't said anything.
It's really rude. I'd say it's almost like telling a woman who's had a mastectomy how lucky she is not to have to wear bras anymore.
Or, for the short answer, I LOVE Yvonne's answer. I once had a friend who told me that when people gave her shit about parking in the handicapped spot (she was prob 37 and looked healthy in spite of M.S.) she would try to give them the handicapped placard, adding that they would need to take the disease as well. That shut them up.
Hope you find your answer.
Rachel Y.
Posted by: Rachel Y. at August 6, 2008 05:08 PMOMG-I am totally crying (at work) after reading this! F the stupid f'er!!! I am beside myself with anger! What an insensitive stupid.......
Anyway~
I love you and I love reading your words. I think of you often and remember laying on the couch together watching Sesame Street on afternoon and my mom and dads. We laughed at the silliness of it all. To this day, when I think of Sesame Street, I think of cousin Debbie and me on the couch.
We had a rough year at the Waseca Relay For Life, but did manage to raise 90K. Not bad for this little area of Minnesota!
Thinking of you often!
Theresa