No, Larry does not have an autoimmune condition – I think I’ve got enough for both of us, thank you very much. But he’s most definitely in an autoimmune marriage. And not to toot my own horn, but I picked really well back at the ripe old age of 18. I knew he was an amazing guy then, and I have a decade’s worth of proof now. Since I “got sick” (I hate that phrase, but in this case I mean it – from the start of this long road back when I had mono/glandular fever) he’s picked up the slack left, right and centre. If I needed something he got it for me. If I hated something he got rid of it for me. If I had no idea what I wanted he helped me figure it out. And when he needed or wanted something, we figured out together how to get it done.
That’s not to say that life has been peachy every single second of the last few years. The changes that come with a chronic condition, much less more than one, are hard and scary and, if you let them, could easily shatter every dream you’ve ever held. There are tears, my friends, many tears. But we wipe them away and take it one step at a time, and sometimes when we do look up and look around we’re amazed at where we are. Sometimes in a good way, and sometimes not, but at least we’re there together.
Recently I was filling out a Myasthenia Gravis Medication Information Card and Larry started teasing me because I couldn’t fit everything onto the lines provided. Then he stopped laughing and said “Jesus, who would have thought we’d ever get here?” I wasn’t sure what to say, but I focused on the fact that he said “we”. It seemed like a profound moment. Then I heard from behind me “I want chicken. Do you want some chicken? Do we have any chicken?” It was my autoimmune marriage fit into 30 seconds.
Rob Thomas released “Her Diamonds” a little while ago and it’s become something of an autoimmune anthem. He’s been supporting his wife for years as she struggled with an autoimmune condition similar to lupus, and this song discusses not only her pain but his pain at not being able to help her. Every line resonates with me. But I hope that Rob, and Larry, and every other partner to someone with an autoimmune condition out there knows that the line “I can’t help her now’ is totally false.
I haven’t gone out very often by myself yet, it’s too easy to get tired, I can’t carry anything anyway and I don’t want people bumping into me, not to mention it’s still warm and sticky so working up an extra sweat is doubly uncomfortable, but I did go out to get DVDs by myself last Friday. I took the LUAS to minimise the potential for tripping on uneven sidewalks (sadly, something that affects me almost constantly) and on the way back got into a nearly empty carriage. Empty until a goth kid complete with black leather trench, mile-high boots and chains and/or spikes hanging all over, decided to sit down right next to me.
I don’t know about you, but when I’m in an almost empty public place and someone decides to sit down right next to me it makes me think twice. It’s breaking societal norms, people, so it leaves me wondering what exactly that person wants. It could be as innocent as a seat in the sun, who’s to say, but it’s still a little weird and the fact that this kid was easily 6′ and had metal music clanging out of his skull earphones made it weirder.
So I sat there and tried to ignore him and when we got to the next stop a rush of people entered. Goth kid stretched out his long legs and everyone flowed around them, a very safe distance from me. Not too shabby. Goth kid was helpful as a giant. Who was to know? We rode in silence a little longer until my stop. I gathered my bag and scooted forward so that I could grip the rail and haul myself out of my seat. As I did that, Goth kid sprang up, cleared a path to the door and nodded for me to use it. I said thank you and he said “I hope you feel better soon”.
I caught a reflection of myself as the LUAS went by and my t-shirt left a few inches of angry red scar showing. I can only figure that Goth kid saw it and in his own way came to my aid. If I’d been thinking I would have told him he was a very sweet young man. And to lose the chains.
Ireland is a country that is fantastic at fundraising. Seriously, it’s this nation’s niche. From street collections to Denim Days, coffee mornings to pub quizzes, mini-marathons to gala balls, somehow the Irish find a way to take a nice act of charity and turn it into a social event that gives back. And I would say medical fundraising is the specialty. All it takes is a brief mention of a family having a hard time on the nightly news and the next morning’s news carries details of the family’s new fundraising bank account to which donations can be made. And donations ARE made. That’s the part that gets me every time.
But amongst all the tales of fundraising fun, I have a new favourite: The ‘dip in the nip’ that took place in Co. Sligo. Well done ladies, well done.
I just described a sun-induced lupus “butterfly” rash by saying “You know how Edward Cullen sparkles in the sun? Well instead of sparkling, a rash appears across the nose and cheeks.”
