Hello, world! Again! It’s been…far too long since I’ve posted here, but I’m in a new situation with my life and have some time to write again (good!) and am having a lot of sibling-related anxieties (bad!).
To recap the past couple of years: I worked as a contract-based teaching professor, during which time my own health was really wobbly. I had a sinus surgery, I did a six-month physical therapy regime after meeting a new rheumatologist, I had far too many infections, saw too many specialists, and have a new, if not-written-out, diagnosis of something being wrong with my immune system. That wrong thing probably means I will get sick more easily than others and will stay sick longer than others, but there’s not much we can do about it except try to convince my body that it’s not allergic to everything. That means daily Claritin/loratidine for awhile. I also ended my job – a combination of my life being difficult so far from family while fighting with my body and things changing at my job; I struggled with meeting some objectives and my contract was not renewed. My fibromyalgia pain is way less bad now; my migraines/headaches are way fewer. I’ve even lost a lot of weight! But I need to move a LOT to keep that up, and I’m not feeling super right now.
As many/most sibs know: living close to/with your sib can be really different than living thousands of miles away. So expect blogging about that.
In Lily’s life, well, things have been just as active. She had a vagus nerve stimulator implanted, to help control the seizures by sending tiny pulses of electricity to her brain, effectively – one description you often hear for the VNS is that it’s a pacemaker for the brain – and we can use a magnet that we wave over the device (in her front shoulder, basically) to send a pulse to stop seizures. Which sometimes works and sometimes doesn’t, and hasn’t been enough. She had to be hospitalized due to complications from changing medications, and had to have her emergency intervention medication added as a daily normal medication. Mom was so frustrated that she started Lily on the ketogenic diet, under the guidance of a specialist nutritionist who works with people with intractable epilepsy.
Expect many, MANY posts to come on the keto diet. Particularly since we’re coming up on some Jewish holidays that involve specialty foods that Lily can’t eat on it, and we’re trying to improvise, using them as a test before her birthday. No chocolate cake – no cake! – for the woman who loves cake, in our effort to stop the seizures. It’s hard math for any of us, but really hard for her.
Which brings us to now: I am currently unemployed, living with my parents, searching for jobs and considering going to school for a master’s degree in an area other than that in which I got my PhD. Lily’s seizures are smaller right now, but not at all what I consider controlled. Mom’s health is okay, but she’s exhausted from the effort of the keto diet (and work, and her own health, and running Lily’s house as well as the family home – I’m trying to help, where I can). Dad seems okay but he’s either aging in a new way or is having symptoms he won’t or can’t acknowledge, and mostly we just get into a lot of fights, because I perceive him as having given up or otherwise disengaged with a lot of what I’m trying to help Mom do for Lily.
And with that: I need to go get in some exercise time before I help make dinner. Lily’s coming over with a supported living staffer, for modified fish taco night. I’ll be back soon!
I’ve been preoccupied with a lot of stuff recently and haven’t been posting much, but my brain has definitely been thinking about the blog while I navigate the rest of life. This morning, something broke into my awareness and I wanted to post it here.
You see, I just learned that a person who I knew in college, Amit Gupta, was diagnosed with acute leukemia. He’s more than just internet famous, as you’ll see if you look him up, and he was already becoming pretty well known when I met him. At that time, I found him to be tremendously sweet and funny and just a really solidly decent human being. Looks like none of that has changed in the time since we drifted apart.
And now he needs help, and we can help him! Leukemia can be treated with bone marrow transplants, which is great. To break down the biology a little bit: the patient receiving the transplant needs to get a donation from someone whose chemical identifications are super similar to his/her own, or the body will see the transplant not as help, but as danger. One way to avoid this is to get donations from relatives, or from people in similar genetic groups. (While race is much much more of a cultural thing than a biological thing, the probability of getting the right chemical IDs in the same place at the same time is easier in humans from similar regions.) So Amit’s friends are organizing a bone marrow registry drive, focusing on South Asians. If you’re in the area, they’re hosting a party in New York City on October 14, 2011, where you can register for the database. If not, and you’re in the target pool and reading this, would you consider signing up?
I’ve sent some cash their way, because I’m not in the donor pool and it takes money to do the labwork that lets the doctors find matches. As a scientist, as a sibling, and as an acquaintance, it’s the least I can do.
You can read about Amit and how you can help here.
Why am I mentioning National Coming Out Day on a blog about being the sister of a woman with disabilities? Well, because one of my hopes in writing this blog is to help promote understanding of my sister’s differences, and I am equally a believer in helping anyone’s differences be accepted. I also have a lot of friends who identify as queer. Thankfully, many of them came out to families whose love for them didn’t change. However, most of them have still experienced discrimination, bullying, harrassment, and more, from within their families and from society.
It can be hard to truly accept people as they are, including differences that feel scary or shocking. It’s worth every bit of effort to do it, though, because – as is, you know, the theme here – we are all born in ways that make us different from each other. Together, we can make the world more inclusive, by learning to treat each other as people, not just as disability, gender, or orientation.
If you haven’t yet, please check out the YouTube channel started by Dan Savage: It Gets Better. (See the column where the idea was launched here.) If you are struggling with feeling different, know that it can and will get better, and you are not alone.
May we all be happy with and loved for who we are!
My mom is superbly exceptional. I know, I know – many children say this, especially during their cultural moments of recognition for maternal care. But my mom really is super damned special.
Regular readers of this blog know that it’s not always easy for me to get along with my sister. I’m often resentful of her medical needs taking precedence over my desires (and sometimes legitimate needs for parental assistance). It can’t have been easy to be our parents, especially when we were young and both needed so much. Help me with math homework? Home physical therapy exercises for Lily? Mediate when Lily’s fascination with ripping paper collided with my love of reading? (It was the last page! The very last page of Charlotte’s Web! I loved that story. And no, I haven’t quite given up my frustration with her. *grin* Although I do understand it, and it happened some twenty years ago, and I have forgiven Lily for this offense.) Being a parent to a child with special needs is just as drama-filled as being a parent, period. Sometimes more. Being a parent to a child with special needs and a child classified as gifted? Whooo, boy, yeah, that must’ve been tough!
But my mom did it, and still does it. Baking cookies with Lily! Helping me pick out a perfect birthday cake recipe for a friend! Letting us each talk on the phone whenever we need to! Some of this is surely due to her profession, and the patience and creativity required for it. But really, my mom is just the best. She did everything she could to help me be my own person. (Okay, Dad, too, but this is about Mom.)
The most heartbreaking thing for me is that she did all of this with so much love, grace, and patience, and for years struggled with undiagnosed multiple sclerosis. (She was officially diagnosed at the start of 1999, when I was in college.) Full time job. Cooked and cleaned. Was fun. Played the piano on holidays, the same songs over and over while Lily and I sang. Put up with each of us and our self-pity and medical care and needing of hugs. And managed to maintain a happy, healthy marriage and longtime friendships all the while.
So here’s to you, Mom! If I ever have my own kids, I can only hope to be half as good a parent as you’ve been. And when people tell me that I’m like you, it’s one of the best compliments they could ever give. Happy mother’s day!
I’m taking some time this morning to deal with “blog business” – one thing I’m doing is adding links to other blogs and to pages that look like they could be valuable resources, both for siblings and for families in general.
A friend suggested that I link to websites or blogs of people that I know are involved in activism or awareness; I’ve been struggling for weeks with the thought that, aside from the Kindering Center/SibNet folks, I don’t know of anyone who advocates on behalf of siblings. (This despite a lifetime of having a mother who has professional affiliations to the disability community, not just personal.) I’m sad about that. Hopefully this is due to my not feeling the need to seek out more forms of support and my (forgivable?) lack of engagement with some parts of the “real world” during grad school.
Most of the links I’m adding are based on web searches that lead me to interesting-looking sites. If anyone out there in the ether has any recommendations, I’d love to hear them!