Perks of the Job…

My daughter is a voracious reader, typically the only item that would be on her wish list come birthdays or Christmas would be a gift certificate to Chapters book store.

She knows that if I read at all these days (eye strain has become an issue) my tastes lean towards non-fiction lately. There was one book however that she had suggested I read, “The Fault in Our Stars” by John Green. She warned me that it was sad, that it was undoubtedly going to make me cry. She rarely sheds tears for the characters in her books, so I knew I’d best have a box of tissues at hand when it was my turn to tackle the story.

I won’t spoil it for anyone who has plans to read “The Fault in Our Stars'” but I will share one thing from the book. Cancer perks.

Erdheim-Chester Disease is at this time still not officially classified as a cancer, but recent studies have it leaning that way. The research community has been making significant strides thanks to several teams around the world focused on learning more about ECD. Even better is the news that the various researchers have been sharing findings and coordinating efforts. An excellent example they’re setting for politicians!

Cancer perks. Things that come your way only as a result of being seriously ill. Offered with kindness and compassion, I’ve often written about my challenges in learning to accept graciously what is offered to me.

Asking for special favours is another thing altogether. Suzanna and I loathe playing the “sick card”. Just about everyone has some sort of burden upon them and neither of us feel that we should get special consideration because of my illness.

As you might have already read here, Suzanna has left university to take care of me. The last months of classes were particularly difficult for her to get through as she grappled with making a decision for herself.

More than a few of my support team members suggested that Suzanna let her student advisor know what was going on at home, I learned that sometimes adjustments to grades can be made to compensate for the strain that a student may be under from circumstances beyond their control.

Suzanna wouldn’t hear of it. She felt it imperative to earn every mark on her own whether it was good or bad without, in her words, pity.

I applaud her for this decision. She passed all of her classes, some grades better than others - but she carries with her the knowledge that she earned every mark on her own.

The apple doesn’t fall far from the tree on this one I’m afraid. Unless it’s essential to the conversation I just don’t see any reason to mention to others on the phone or in emails that I’m ill. Before needing mobility devices (crutches, the special cushion and then the wheelchair) and oxygen, getting away with being perceived as ”healthy” had given me a bit of a thrill. A chance to fade into a crowd.

I played the sick card last night, and it burns me today thinking about how hard I had to slam that card down.

We’ve had intermittent, yet continuous problems with our internet and phone connections since moving in here. Techs have come and gone, yet the problems weren’t resolved.

We nearly had emergency services here a few days ago when a PSW was trying to call from the lobby downstairs. The only reason I even have a landline is to be able to buzz visitors in, when it’s not working I can’t get anyone inside the door. Protocol with my palliative team dictates that if I don’t answer the phone, help is to be summoned.

That particular situation turned out alright when another tenant opened the door for her more than twenty minutes later, but I’m sure you understand the importance of having a phone that works. Unfortunately my service provider didn’t see it the same way.

A call to the technical support line last night landed me a Thursday appointment for the repair, four days away. It was suggested that I have visitors call my cell phone, and I could go downstairs to unlock myself the door in the meantime. I respectfully explained to the agent that due to disability I’m not able to leave the apartment. That still didn’t get me anywhere.

I explained that not answering my phone would be setting off alarm bells with my support team. Still no luck.

So I did it, I played the sick card. Apparently the situation I’d already laid out still wasn’t enough to warrant sending out a tech the next day, but telling the whole truth finally got things moving. Being disabled wasn’t enough of a reason, but being palliative is.

Cancer perks? Not this time. Just the provider stepping up to do the right thing as I see it. Sometimes the bar needs to be raised for those who need special consideration. I’m not thrilled to be stuck on this boat, but I am getting braver about asking for the rules to be bent on behalf of myself and others who sit on the boat with me.