Sunday, February 22, 2009

I'm Disabled. So What!

I often try not to think about lupus being a disability up until the point I get that note from my doctor saying that I have to stay home from work for a few days and rest, or those other times when my doctor gives me a note to get a disability placard for my car because I can barely walk ten feet.  There are also times when I need a wheelchair to get around because the pain is too much to bear. At these points I feel like the only disabled person in the world.  At some point during my episode of self pity, I realize that as disabilities go, I'm pretty lucky.  All my body parts still work.  They may be swollen and painful, but they are working.

I'm thinking about this on Oscars night because of the Disability Advocates who are protesting the Humanitarian Award given to Jerry Lewis.  Advocates believe that Jerry Lewis portrays the disabled as pitiful and pathetic.

My mother used to tell me that blacks have to work twice as hard to be considered half as good.  As I grew up, I realized that black women have to work three times as hard to be considered a third as good.  Now, I'm thinking a disabled person has to work four times as hard not to be considered pathetic.

My boss Carlo (who abandoned me to go work for Yahoo!) used to treat me like he was one of my brothers.  When he saw that I wasn't feeling well, he'd crack these insensitive jokes.  Oddly, this helped me feel relaxed about my problems because I knew my boss treated it as no big deal.  He knew that I could still do my job no matter what was happening physically.

I honestly just want to be normal, but that's just not the case.  I would like to go out for drinks with friends, except I don't drink.  I'd like to order a non-alcoholic drink without being questioned as to why I didn't and have to answer a myriad of questions as to why my lupus medications don't allow such a dally into alcohol, and then listen to how other people with lupus drink away with no worries.  I'd like to be able to perform simple tasks without people trying to take the responsibility away from me.  I'd like to be considered for promotions without wondering if senior staff will question my health and abilities.  I would love to climb a flight of stairs without my husband asking me if I'm going to make it.

Anyway back to Mr. Lewis' Humanitarian Award.  Mr. Lewis is quoted as saying, "You don't want to be pitied because you are a cripple in a wheelchair? Stay in your house!"  Mr. Lewis may be a bit insensitive in his statement here, but unfortunately, he has a point.  Whenever I'm in a wheelchair, I do catch the eyes of people staring at me in pity.  I guess it's just human nature.  I think this pity puts a duty on the disabled.  We have to prove to others that we aren't to be pitied.  That even though we have certain physical issues, we can move beyond them and be treated as equal members of society who shouldn't be pitied any more or less than anyone else.  It resembles the same fights that African-Americans and women have to make.  I have to say, "I'm black.  So What!"  I've also said (most of the time to my brothers), "I'm a woman.  So what!"

Now with these issues of the pity I receive for having lupus, it's up to me to stand-up (or sit in my wheelchair) and say to Mr. Lewis or anyone else who tries to pity me, "Yes.  I'm disabled.  So What!"

I guess that's it for my lupie soapbox today.

Have a Lupie Day.


Friday, February 6, 2009

Too Lupie, Be Happy

I'm happy today, and it seems to make me feel good. I say this because for the past week. I've been feeling horrible. I thought I was in a flare because I woke up with a sore throat, and I felt like I'd been hit by a truck. I was achy all over. I didn't have a fever, and I had no other symptoms. I stayed home from work last Thursday and Friday, and I've been dragging myself around all week and over sleeping every morning.

On Tuesday, I discovered that there were quite a few people at work who had the same symptoms I did, and it was a relief because now I know that it isn't a flare, just a nagging bug. Once I realized it was a bug, I figured that I would get over this thing eventually, and just take it easy.

On Wednesday nights, some women friends and I play poker. I had asked Geoff to make sure to go home early to see to the kids. I know my kids are older, but my daughter is a teenager, and she still needs guidance from time to time. Unfortunately, Geoff didn't go home, and I ended up dealing with the kids more than I should have for my night off. (Silly me. Moms don't get the night off.) This resulted in my going home and yelling at my family about being self sufficient and responsible.

Afterward, I went to bed crying about how I was an awful mother. I was definitely having a roller coaster of a night. Because of this, I woke up Thursday feeling horrible. I was tired and achy again. Nonetheless, I picked myself up and went to work, and I woke again today feeling tired and achy. I also couldn't get my wedding ring on because my fingers were swollen.

When I got into work, I decided to drink some Yogi Tea Peach Detox thinking that would help with the swelling. My friend at work, Rachael, has a tea kettle at her desk, so I went over to ask her for some water. Rachael was in such a great mood, somehow her mood rubbed onto me, and I feel better now. I do still feel tired, but the general achiness is much better. Or maybe it was the detox. I think it does have a lot to do with mood because I am feeling pretty happy. Sleepy, but happy.

Therefore, I want to emphasize the importance of happiness. First, I want to say that lupus is tough. It can come along with a variety of psychological symptoms, even the steroids have been known to cause severe mood changes and panic attacks. Because of this, the concept of happiness is difficult for people to comprehend at times. Nonetheless, we need to work at being happy, and believe me, happiness is work.

1. Find happy people. As I mentioned earlier, Rachael's happiness improved my mood. We should all endeavor to be around happy people to make ourselves happy.

2. Read happy books. Find funny books at the bookstore or the library. I used to really get a kick out of Irma Bombeck.

3. Watch funny shows. And I don't mean ridiculous reality shows where the people are doing things so stupid it's funny. I believe those things actually tear away at your emotions instead of build you up. Try watching situation comedies or stand-up comedians.

4. Funny movies. Nothing cracks me up more than "There's Something About Mary".

5. Think happy thoughts. Try to remind yourself of the good things in your life such as family and friends. If you don't have family or friends, think of the things you have within yourself, like your brains and your fortitude. Even if all you have is a roof over your head, be grateful for that. If you have nothing at all but your life, be happy that you have a life with the potential for great things. Everyone who's living has that.

Well, I hope I've left you with enough happy lupie possibilities. Have a lupie day.