On Love and Loss

“The Anatomy Bequest Program at the University of Minnesota is is a whole body donation program.” As my family found out on Tuesday night, it is also the largest in the world of its kind. http://www.med.umn.edu/research/anatomy-bequest-program

I have always grappled with organ donation – but only because I’m not able to, ever. I want to. But thanks to all of this autoimmune stuff swimming around in me, and my eyes being damaged from the pressure being placed on my brain from this mystery disease, there isn’t any part of me that is safe to transplant into another person. This anatomy bequest program seems like the next best option. I envision baffling some of the medical students with my weird disease – or maybe they open me up and immediately figure out what the problem was, and it was nothing that could have been detected with scans. My brain will be sliced and sectioned and labeled for its “A-ha” moment, and I’m perfectly fine with that.

I sat with my sister and her little family, and we knew our brother-in-law and another family member were somewhere in the audience. We were in an auditorium on the U of MN campus to watch a show put on by students and staff as a thank you to the family members of the people who had passed and donated their bodies at death. I knew it was going to be a tough night. I could feel the sadness rolling off of the people around me and I immediately started choking up. I had tears during the first performance, a pianist playing a Debussy piece. A little of the tension was relieved when it was announced that a trio was going to perform a Lynyrd Skynyrd song and an old hippie in the section next to me let out a gruff and enthusiastic “All right!”

The performers took a break and a slide show began. Each donor was being shown in pictures chosen by their spouses or families, with Joni Mitchell’s version of “Both Sides Now” playing. I knew our sister was going to be there on the screen very early on alphabetically and the tears came again. After her time in front of the crowd, I just closed my eyes for a while. People around me were sobbing quietly. I have no idea how recent their loss was, but it really doesn’t matter, because we were all there for the same reason. We loved our people.

The performances continued after the slides made it through the L’s; one poetry reader encouraged us to hold hands with the people next to us while she read her poem about hands. I could feel my older sister and I freeze at the same time, uncomfortable with the suggestion. I leaned over to my sister and whispered, “I’m good.” We weren’t the hand-holding types.

After more performances, the slides continued with the rest of the donors. I’m not sure when it started, but as each picture was displayed, these little groups of people would clap when their person was shown. Some whooped a little; one woman yelled out, “We love you, mom!” There was more sniffling and sobbing, more tears. My sister and I were surprised to see a former classmate’s picture at one point – she had died only about 2.5 months prior from breast cancer. I imagined that her parents were somewhere in the mass of people, also proud and incredibly sad.

It turns out that our brother-in-law was just in the next section and so after the auditorium started emptying, he came over to us. He has always been a jokester, so it was especially heartbreaking to see him openly crying. He apologized when he hugged me, which is what we all do when we think we have to hide our pain. He is the one I worry about the most. He is now alone in his big house, a home that has so much of our sister still in it. She had MS and was confined to a wheelchair for most of their marriage, and the house was modified to accommodate a wheelchair and scooter. He cared for her, turned her, carried her when she needed help getting to the bathroom. They were each others’ best friends. He couldn’t even take much time off from work to mourn her because he had used up all of his allotted time to make sure she was comfortable in her last two months while cancer took over.

I know our brother-in-law mourns deeply. I am having a hard time finishing this post because the grief keeps crashing into me in waves, and I have no doubt that he feels it more than any of us. My singular wish for him is that he will be able to find someone to love again when the time is right. I don’t like the idea of him holding onto the memory of our sister for the rest of his life and turning away from another great love, and I don’t think that is what she would want for him either.

I am grateful to the U of MN for having this program that allowed us to come together and celebrate the giving and joyful heart of our oldest sister.

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How Now, Brown Cow?

I saw my 42nd doctor today. I always start my introduction off the same way for everyone: “So, are you up for a challenge?” I get the same reaction every time, like there is no way I have something they haven’t seen yet. I feel their need to pat me on the head and tell me I’m being cute, and they’re waiting to smirk and say, “Oh, it’s just a migraine, sweetie.” But then they start to sputter, or stutter, or ask me the same question six or seven times. Then they leave the room. Then they come back in (as if they haven’t just gone into their office and said “Fuck” a few times, noiselessly, before putting on their game face and walking purposefully back into the exam room). This doctor was no different.

He said, “I just don’t know what you have. I have never seen this before, but you know, I’m just a neurologist. I wouldn’t know what to do with you.” I said, “Study me.” He said, “I wouldn’t know what to study.” I said, “But these are neurological issues. Someone has to be willing to think outside of the box, like keeping me upright for scans instead of laying down.” He said, “But I don’t know how to help you. I think you should go back to the neurosurgeons.” I said, “Okay, can you talk the neurosurgeons at the U of M into taking my case?” (He is, after all, a University of Minnesota neurologist.)

He said, “I’ll just send them a referral like normal.” But this isn’t normal. None of this is normal. I wish that I could make my surprised face now (even if it’s an act), but, you know, my face is half paralyzed. I really had to fight the urge to have my medical transport person make a pit stop at a bakery so I can buy a chocolate cake to put my whole face into in the privacy of my apartment. I’m past crying about it. It’s just exhausting. How am I supposed to carry on without even a small glimmer of hope? The doctors tell me not to give up. That means “fight,” right? But they don’t want me to fight with them, just the ever-elusive “someone else.” I often wonder what they would do if they were me.

Today wasn’t a total loss, though. My sister and I went to see a dermatologist at the same time early in the morning and then made a pit stop at her place to pick up her two dogs before she went to work, and as usual, the smaller female managed to get loose and run free. She’s some sort of terrier mix with short, wiry hair and sweet brown eyes that my sister and her husband got the day I moved to Minnesota. The male is some crazy mix of beagle and who knows what else- maybe Saint Bernard? – he’s got kind of a big body but pretty short, stubby legs, and the saddest face ever. The male also does not move fast for anything. When he sees me, he knows I’m going to rub his belly, so he doesn’t even bother coming over to me first. He just throws himself on the floor and raises his front paws, like it would be way too much effort to walk a few steps, and I definitely should not miss out on scratching his armpits. So while my sister was trying to lure the female back with treats and we saw her bounding through some brush like a jackrabbit, the male saw me from about 50 feet away and launched himself towards me near the parking area. I swear to you I have never seen him move like that with his ears flapping in the wind before, and I probably never will again. The female heard me calling for her and she buzzed right past my sister and threw herself down for a belly rub too. I really wish I could have pets. I’m lucky my sister works across the street and I can go get some fur therapy when I have a crappy day. They were both rescue dogs, so it warms my heart that they love me enough to come to me too.

Today my sister drove my car so that I could clean it out a bit before listing it for sale. Let’s be clear, here: I don’t want to. I love my car. I did a lot of research before I bought it, and it has all of the features I wanted and nothing I didn’t. I had planned on keeping it for at least a dozen years and so made sure it had the best possible engine for its price point. I got a platinum extended warranty. It fits in every parking space. It’s a hatchback, so even though it’s in the car category, it sits up higher like a small pickup – that means it’s super easy to get in and out of. I could go on and on. Cross your fingers for me for a quick and successful sale, because girlfriend’s gotta live off that money for the next twelve months, know what I’m sayin’?.

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