Fuck the shoulds

July 17, 2013

I don’t get this mad very often, but right now I’m completely pissed off. I want to take all of the “shoulds” and get rid of them forever.

Let’s look at a few: I should handle this problem better. I should be smarter/wiser in this situation. I should be more patient. I shouldn’t let myself feel sick. I should have more self control. I should be a better friend/sibling/parent/worker by nature. I should know how to fix this. I should I should I should….

Ok, be honest, how many of these have you thought to your self? I’m betting at least one, but probably a lot more, not to mention many others I didn’t write out. Some of these are internal shoulds (we burden ourselves with these assumptions) and others are external (other people push them on us.) It’s important to look at the two separately, and I may do that on another day, but today I’m concerned that they exist at all.

Let’s get on the same page here: there are no shoulds in life. We are who we are. Well ok, there are some shoulds: We should all try to be decent human beings who care for one another and try not to hurt each other. But as for the rest, it’s complete bullshit. Giving birth doesn’t magically turn someone into a knowledgeable parent. Getting a job doesn’t magically make someone a great worker. Being sick doesn’t magically make someone strong enough to handle it. Just just not how life works.

I was recently talking with other folks with chronic illnesses and I noticed the same themes: people thought they should be able to handle their problems better just because it’s assumed of them. They felt they’d failed because they needed help. For some reason, not being able to do absolutely everything was considered a failure. Why is this? We’re only human. We ask for help with all sorts of things. When my friends’ roof leaked, they knew they couldn’t fix it themselves so they hired someone to do that. Is that so bad? When my grandfather has computer problems, he calls me to ask for help. What’s wrong with that? And if I feel too ill to get to the pharmacy to pick up a prescription then I’ll ask a friend to do it for me, and no one better dare suggest that’s any sort of weakness on my part. In fact, I think it’s a strength. It’s hard for many of us to ask for help, and knowing our limitations and respecting them enough to ask for help is a sign of how strong we are, not how weak.

A friend asked me to help her out with her kids. She was alone while their dad was out of town on business and she felt overwhelmed. Like me, she isn’t good at asking for help, so when I saw her message I knew it was serious. I was relieved that I was having a “good” day and was able to go over to help out. Sure enough, she was at her wit’s end. She was overwhelmed and exhausted. Having someone else there to watch the kids, give them food, keep them from crying, and all that other good stuff really helped her out. But afterwards, she talk about how she felt she wasn’t a good mother. Why? Because she felt she should be more patient. She should never get frustrated with her kids. She should never lose her temper. I pointed out that being a mom doesn’t make her less human. Of course she’s still going to lose her patience! There’s nothing wrong with that, as long as she keeps it within reason and asks for help when she needs it, like she did that day. But the part that pisses me off about this is that I’ve heard this same thing from so many friends who are moms! They all feel that they should be better, that simply because they have two X chromosomes and some kids, they’re supposed to magically be perfect parents. And they’re so embarrassed that they’re not perfect that they don’t talk about it, so they don’t realize it’s happening to everyone else, too. I think they tell me because I’m not a parent, so I can’t judge. But it also means I can’t reassure them.

The same is true for chronically ill folks. We hear the stories about the one-legged marathon runner or the person with MS hiking a canyon, and we figure we should  be able to at least get to the grocery store. We don’t talk to each other so we don’t realize that just about all of us are going through the same thing. We all have limitations. We all have obstacles we overcomes and obstacles we don’t. There are no shoulds in life, just life itself. We all have limitations, and expecting them to disappear because they should won’t help at all.

It’s time we all talk to each other. Let’s open up the discussion. We’re all doing the best we can and that’s fucking awesome. Let’s not diminish that. Let’s celebrate it!


I won I won I won!!!

July 16, 2013

There’s a great moment in an old episode of “Mad About You.” Jamie walks into the apartment and tells her husband that she won the big account she was working on. Then she throws down everything her arms and jumps up and down wildly, Yay!waving her arms, and screaming, “I won! I won! I won!” That’s been going through my head a lot lately.

I applied for long term disability insurance in the spring of 2012 and FINALLY last week I got a resolution: I WON! Well, ok, I know “winning” isn’t the most accurate term, but after being denied and appealing and having the appeal delayed over and over and over again, it sure feels like a major WIN.

I’ve been alternating between jumping up and down (well, figuratively anyway) and wondering if maybe I dreamed it all. Did I really win? Is it actually over? Did I really speak to my lawyer or am I just imagining it? My family and friends have been amazingly supportive through this whole ridiculous mess and this is no Boston sunshinedifferent: I’ve gotten hugs, tweets, emails, and phone calls of joy. They are so happy for me. But me, I’m still in disbelief. Could it really be over?

Of course, it’s not really over. I have yet to receive the payment for money owed. I still have to get paperwork assuring me of the ongoing monthly payments. My lawyer needs to be paid. I need to get my old health insurance back, hopefully before my next medical appointment in two weeks. Once I have the health insurance, I need to start applying for reimbursements for prescriptions not covered by medicaid. There’s a whole long list of things I need to do.

And those don’t include the worst of all: preparing for the next stage. My Social Security application is still pending, but that’s not what worries me. What worries me is that the LTD process dragged out for so long, that in a few months I will need to start the application process for the next stage of coverage! After so many months of effort and anxiety, I really want to rest and focus on my health. I don’t want the distraction of more of this bullshit.

So for now I’m trying to just focus on the win. I’m trying to remember that I succeeded. I’m trying to remember that even though I got only what I deserved (actually, less, when you consider the many hours and huge amounts of money spent on lawyers, medical records, medical visits, etc.) this is a good thing. There is more to be done, but that can wait. It will still be there next week. Right now, I need to (figuratively) jump in the air and shout: I WON I WON I WON!!!


The little things really DO make a BIG difference

June 29, 2013

It’s amazing how a small thing change make a huge difference. I was just getting mentally ready to go to a friend’s house. Pills in purse? Yes. Food? Need to bring some. Clothing? Better make sure it’s all loose today. Cooling towel? Cool enough to work for the car ride. The routine is familiar, but annoying.

And then I got a text from my friend: “What room temperature is best for you?”

WOW! We hadn’t discussed that. I knew he had a/c, and I’d mentioned that I’d need him to turn it on, but that was it. But he remembered how sensitive I am to heat. He knows that often I don’t meet up with him for lunch because I can’t stand the humidity. I know he and his wife don’t love the heat, but unlike me they can certainly deal with it. And he thought to ask what temperature I want his a/c set to. He’s going to change the temperature of their apartment for me.

Now that’s a thoughtful friend!


A true friend understands

June 17, 2013

As I’ve said many times before, my sister and I don’t get along. Yesterday was another good example of why I don’t like to be around her.

My mother made a big dinner for Father’s Day. After dinner, I was sitting in the kitchen talking to my mom while she put food away. My sister was washing dishes, and suddenly asked me to help dry. Now, while we’d been sitting around earlier, I had made several long trips to the bathroom. I was pale. My mother commented later about how bad I looked. My eyes were puffy and half closed. While the rest of the family had talked animatedly in the living room before dinner, I had been laying there half asleep, barely saying a word. So it was pretty obvious I wasn’t feeling well. And yet she was asking me to dry dishes. I didn’t want to start a fight, so I just stood up and dried a couple of dishes. I did it slowly, careful not to drop anything, careful not to fall when I turned to put each one down. And after a few, so there just a little space in the dish rack, we all went into the dining room for dessert. I figured it was good enough. It was more than I should have done.

After dessert I didn’t even bother going to the kitchen. My dad and I sat at the table chatting – I figured he shouldn’t be abandoned while my brother-in-law was taking their dog outside for a potty break. My mother and sister were cleaning up in the kitchen. I heard my mother thank my sister for her help as my sister walked into the dining room, where I sat with my dad. My sister responded, “Well I couldn’t let you do it all by yourself.” Then she turned and looked right at me. I would have given her the finger, but again, I didn’t want to start a fight in front of my parents.

Now let’s compare that to the day before. A friend was visiting from out of town. I wanted to see her and her three kids, but I didn’t feel up to going to her parents’ house where she was staying, 1/2 hour away from me. So she agreed to make the drive up to my neighborhood. There’s a great playground within walking distance of my place but I didn’t feel up to walking, so she drove to pick me up. She understood that I couldn’t help much with the kids, and didn’t mind that I sat on a bench in the shade while she chased them. She was just happy for our time together. She even gave me a birthday gift. I pointed out that I didn’t expect anything – after all, I hadn’t given her anything this year. I can’t afford it thanks to the insurance bullshit. She said that even though I couldn’t afford to give gifts, it was still my birthday and she wanted to give me something. And you know what she gave me? A big gift bag full of gluten-free goodies! She gave me several kinds of pasta, flour, cake mix, pancake mix, pretzels, and cookies – all gluten-free! She knows how hard it is for me to find some of these things, and she gave me exactly what she knew I’d want and enjoy. And as she gave it to me, she offered to exchange anything I couldn’t eat, since she wasn’t sure exactly what my other food restrictions were. Talk about someone who understands!

Sure, my sister can be a bitch. Sure, she didn’t wish me a happy birthday. But I’m choosing instead to focus on the excellent people in my life who are wonderful, understanding, and supportive. Most of us have lost people due to our illnesses, but some of us have been lucky enough to find true friends will always be there for us.

As a side note, I want to remind myself and you that we contribute to these friendships too. Maybe I can’t babysit for my friends or cook for them when they’re ill. They offer to get me groceries and pick up prescriptions. But I lend an ear and am very supportive. I have helped them prepare for job interviews, research insurance for a kid’s illness, and just listened to them complain about jobs and families. Our illnesses don’t prevent us from being good friends. Some people don’t get that, so it’s up to us to focus on the ones who do.