Anyways, here’s the deal: I basically was sick or weak from being sick from mid-September until the end of December. I’ve been sick a few other times this year, and have struggled with allergy symptoms, and have had a sudden increase in the frequency of headaches. I asked my primary care doctor if we could look at my immune system, because this is not the first year during which I’ve gotten sick a LOT, and she agreed that it was time. A chest x-ray was clear, but some bloodwork was odd, and my doctor referred me to a specialist who treats patients with allergy or immunology conditions. She ordered more bloodwork and some allergy testing and is referring me to a neurologist about the headaches; I am in the middle of this now. Given some of my professional background in mammal biology and my scientific training, I’ve managed to convince myself, with the aid of web searches, that I am possibly contending with a major problem. (Have you heard of medical student syndrome? It’s when med students diagnose themselves with everything, because they know what exists and overinterpret symptoms. I’m a PhD version of that. ) I am trying to calm myself with the knowledge that it could be a year of bad luck and smaller conditions on top of that – maybe I need different treatment of my anxiety and depression, for instance. But my health has affected my work this year, and it has been very hard not to worry about the future in the presence of this new kind of uncertainty. I hope to know more in a few days, but also know that it might be awhile before there are answers here.

Being a member of my family makes it that much scarier, or sadder, or frustrating, some days.

I know my father loves me very much and is worried about me, but last night when we were discussing this week being my week o’ doctor’s appointments, he said something that really hurt. He commented that if I were my sister, I’d have even bigger problems. Which…I knew, of course, and is something that I live with a lot, as many of us sibs do, I imagine. It both felt fair, as however awful I feel these days, I am able to go to work sometimes and feed myself and watch television and such, and unfair, because whatever is wrong could be serious and we just don’t know yet. But I am fully aware of the fact that her life is more complicated than mine, and that my desire for comfort is so strong right now that I don’t want to care. (The old drama of the post title? Our old friend sibling rivalry! Because I’m 100% sure that other sibs have conflict over parental attention when they feel bad.)

So for the moment, I am in a holding pattern. I know I will write more about this when I have more information, because it’s a big deal to me, as a sibling, to be in a process of diagnosis for myself. I will also try to post some holiday stories, from Thanksgiving and Chanukah. In the meantime, I will leave you with some Lily moments that have made me laugh:

- Lily tried to blow on her soup to cool it, my mother told me. The only problem was that she was blowing in the wrong direction!
- One of Lily’s latest fascinations is with whipped cream on top of her desserts. When I was visiting for Thanksgiving and she had been given some ice cream for dessert, she made a request for something my parents didn’t at first understand – and you can bet that I did! I watched in silent amusement for a minute before offering that Lily had requested “cream” – as in whipped cream – and everyone had a good laugh. And yes, Lily got her whipped cream.
- In a phone conversation awhile ago, Mom and Lily and I were chatting about how a water line broke near where I live and caused a shutdown of my water supply. Mom said I could use their shower (in jest; we live thousands of miles apart) and I replied that I would use Lily’s shower, in her apartment, so as to have some quiet. Mom asked Lily if that would be okay, and the immediate, stony reply was, “No!”

May the new year be happy and healthy for us all!

Here’s the info from the director of the network, Don Meyer:

Dear friend of Sibshops and the Sibling Support Project,

If you’re like me, you will start thinking about gifts for loved ones in the next few days. And, like me, you may prefer shopping online instead of heading to the mall.

If you are one of the millions who shop at Amazon, I have a favor to ask: Will you support the work of the Sibling Support Project by beginning your shopping by “entering” Amazon through the Sibling Support Project’s “Astore”?

You will get the same great deals you always get at Amazon, and Amazon will donate up to 6.5% of the purchase price to the Sibling Support Project!

Here’s the website for our Amazon Astore [Note from Elysia: link opens in a new window!]. Please add it to your favorites or bookmarks.

Once you add something to your shopping cart and proceed to checkout, you can then wander anywhere on Amazon. (And, if needed, you can yank any item out of your shopping cart prior to purchase.) Any eventual purchase made within 24 hours of entering the Astore will benefit the Sibling Support Project. 
 


Thank you for your support! Here’s the link again.

One last thing! If you’d like to celebrate the holidays with a direct gift to the Sibling Support Project please click here. Those who give at the $100+ level get a free copy of our newest book, Thicker than Water: Essays by adult siblings of people with disabilities!

Wishing you all the best,



Don Meyer

Director, Sibling Support Project

PS—In case you were wondering, we never know who buys what on our Amazon Astore, so we’ll never know you bought grandpa a subscription to Playboy.
 


PSS—If you think this is a cool way to do good while doing the inevitable holiday shopping, will you please share this email with others?


Echoing Don’s request, if you know people who like to shop using Amazon, please let them know about this link! SibNet, SibKids, the new SibTeen, the workshops, the books – these are all resources that have helped so many of us siblings, directly and indirectly. It pleases me to be able to help share a way to support a great organization…and in these uncertain economic times, to do it in a way that doesn’t place a huge financial burden on people who want to help.

Here’s the news from Don Meyer, director of the Sibling Support Project:

For quite a while, I have wanted to create a place on the internet just for teens. I am happy to say that SibTeen is now available both as a Yahoogroup and a Facebook group! You can learn more about joining SibTeen by visiting http://www.siblingsupport.org/connect/sibteen-facebook-group-and-yahoogroup

Many thanks to Ariella Meltzer, Christiana Redman, Lisa Chow, Pat O’Connor and others who helped me with this!

Best, as always,

Don

I hope this becomes a valuable resource for those who need or want it!

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.

There is a candymaker that produces three popular flavors: chocolate, caramel, and peanut butter. I’m a pretty big fan of chocolate, and have been for probably all of my life, and I used to enjoy those little lollipops a whole lot. The thing is, I rarely was given a single candy, in this set of memories. I frequently was given a few, to share with friends or classmates or neighborhood children.

I almost always ended up with the peanut butter.

How? Why? Well, I was taught to give my guests their choices first. Most other kids will easily go for the chocolate flavor, and many will want the caramel. Very few kids wanted the peanut butter. I was annoyed, within those moments, in trying to negotiate who got which candy, that I so clearly wanted the chocolate and knew I wouldn’t end up with it, that I would sometimes pick the peanut butter to spare the feelings of my companions. I would help them feel like it was really my choice – which, clearly, it was, just not in the “I’m picking what I truly want” sense. And yes, I remember this happening fairly often. I didn’t always end up with the peanut butter, but I did often enough that I do very much recall this as a series of events that transpired.

To be perfectly fair, yes: the peanut butter was still candy, and it was tasty! It wasn’t some major burden. But I regard this as a symptomatic memory: from a young age, I was picking things I didn’t want in order to avoid/minimize confrontation or disappointment, to help keep as many people happy at once as possible, even if it meant that I didn’t get what my heart (or taste buds) wanted.

I just ran across a snippet of online chat between myself and a close friend, in which we were discussing my shame about how hard it can be for me to express some of my real desires to the man I’m dating. My friend noted that I’ve had relatively little practice with expressing myself in romantic relationships, since I haven’t had a lot of them, and further opined that asking for what I want was not something I ever really was encouraged to do. At the time, this was mostly revelatory; I had gotten so used to thinking it was not a good thing to pick what I wanted, finding it selfish, that I had not given myself permission to ask for what I wanted. This explains a LOT about me, including how I will not spend money on, say, new jeans…until the old ones are beyond saving, even if I needed new ones sooner (or wanted them), despite having the money to pay for the jeans…and at the same time I would not hesitate to spend the same $30 on a gift for a friend.

What does this have to do with worrying about my sister? I’m used to wanting her to be happy, and I’ve spent a lot of my life thinking about her happiness, with less consideration of my own. Oh, sure, we were rivals, and I fiercely defended my toys and books from her grabbing hands, but I also made sure to share when I snuck cookies or chips from the cupboard. I think that it’s an extension of the fact that her medical needs often mean the rest of the family has to drop whatever we’re doing and care for her. We do it without hesitation, of course – we love her – but growing up with it, I think I didn’t notice that I started treating a lot of the rest of the world that way, too.

Since then, I’ve wavered a bit. It feels wrong to say that I’ve never been encouraged to do what I want, when my parents were so careful to help me find and pursue a career of my choice, so supportive of my decision to go so far from home for my education. I also can’t and won’t say that it was a constant thing, that it was entirely bad, or that I feel like I’ve suffered because of it – sometimes being able to predict someone else’s happiness and to choose that over your own is a necessary skill. I’ve decided recently that the two aren’t mutually exclusive: it’s possible to have had encouragement to make certain big life choices with an eye towards what would make me happy, and also to have not gotten the external reminders that now it seems I needed that I should be doing this, to some degree, in all parts of my life. Especially relationships. It might have saved me some grief: not asking out a high school crush, or continuing to “date” a young man who didn’t want to kiss me ever, or accepting a friend request on Facebook from a classmate I can’t stand.

Difficult life lesson: it’s okay to be happy, and to pick what you want. Even if it’s just a flavor of candy.

It’s possible that my earliest memory is not of my sister, but of simply standing up in my crib, arms stretched up, calling for my mom, who walked into the room to pick me up. That’s so vague, though, that I’m not certain when it happened. Not so with my sister’s birth, of course, as that has an associated date – a couple of weeks before my third birthday.

The first thing I remember is the way the overhead lights reflected on the waxed hallway floors. I was holding my father’s hand, and I was sort of chasing the reflections of those lightbulbs as I walked along.

I’m not actually sure whether my father’s mom was there, but I have this little bit of memory that she was, and one of my dad’s sisters. There’s about that much memory of my mom’s parents being present, too. But mostly it was me and my dad, and that shiny hallway.

My mom was sitting in a hospital bed, and I have zero memory of being invested in why she was there, but I remember being pleased to be with everyone. I was allowed to sit on the foot of the bed and to share some of the food tray that had been brought in for my mom…and I fixated on the tiny box of Cheerios. (It amuses me to no end that I apparently have had a lifelong fascination with miniatures, microscopic organisms, and assorted other small things – this is the first example of my thinking that I liked something because it was small!)

I wasn’t quite three years old at the time, so I imagine that I had learned how to pour liquids but wasn’t particularly good at it. The next thing I remember, I was trying to pour milk into the cereal, and my dad was telling me that I shouldn’t take it all – that Mom needed some, too. In retrospect, he probably was just making a comment (and, of course, having just given birth, my mother probably did need some nourishment!), but my young self heard it as chastisement.

It’s a bit sad that the most crisp moments of that memory involve shame, of feeling like I let my mom down, because my mom really is the best and I would have been aware of that even at my very young age. It’s curious to me that my first memory of my sister’s entrance into my life doesn’t directly involve her. It’s more than a bit amazing that this happened to be a day I remembered, given how important I would understand it to be so many years later – the birth of a sibling is no small event, and my sibling…was going to mean changes even greater than most. By that point in time, my parents would have realized that the doctors were either wrong or had not been entirely honest about the extent of my sister’s disabilities; her cleft lip and cleft palate would have been obvious, and I’m guessing the uneven bone growth of her skull would have been clear, as well as the hydrocephaly and possibly her lack of right eye.

My sister means more to me than I like to admit, even now, as I write this, enjoying my freedom from responsibility for her and my freedom from her irritating personality traits and our sibling rivalry. She’s my sister, and we have an unusual but fairly close relationship, and it seems really fitting to me that my conscious, remembered life began on the day that she was born.

I’m still feeling pretty irked that my mom had to challenge the decision in the first place, and I’m fully willing to admit that my response is more emotional than logical. Which is okay by me – this is my sister’s life and health, and my family’s finances and ability to care for my sister. It’s stuff to which a transient emotional response is reasonable.

The “adding insult to injury” development in this story (…literally?) is that apparently my parents received written notification that the insurance company decided that this hospitalization was not medically necessary, which I understand means that they are unwilling to disburse funds to cover the stay. My suspicion is that Lily’s case got flagged by someone as causing too much expense, since this was her second hospitalization this calendar year. When my mother was explaining this to me on the phone, the emotion in her voice…well, she was extremely upset. She wondered how it was possible that they decided this, given that Lily was not only frighteningly lethargic, but also having difficulty breathing. (I asked whether the family could solicit a letter of support from the doctors, and she said that she had already written a response to the insurance company that she was going to send to the doctors and to her lawyer.)

When I listened to arguments about how to reform the American health care system (link goes to video/transcript) on Bill Moyers Journal, some time ago, this is the kind of pain I fantasized would be reduced or minimized. It makes me very, very sad and angry to think that my mother pays a huge fraction of her annual salary to maintain a high level of healthcare for the family, and that plan fails to cover an emergency-room based hospital admission and stay. Lily doesn’t get a lot of infections, and except for this year and that one Salmonella incident, she hasn’t been in the hospital for…what, a decade? Which isn’t bad for a blind woman with barely-controlled epilepsy, some dental issues, and some chronic skin problems. And it’s a little infuriating to think that my mother will likely triumph in getting the costs covered…after the insurance company uses up valuable time and money in resisting. It seems shockingly wasteful, if the real point of medical insurance is to give back the money that my family has paid in when something has gone wrong.

…hence my cynicism about healthcare in this country being, above all else, a vehicle to deliver profits. Which makes me that much more grateful to the numerous nurses and the somewhat less plentiful doctors I’ve known or encountered in the course of my sister’s life – people who have given really impressive amounts of love, attention, support, and dedication to their patients.

Turns out that my sister’s recent adventures with bacterial infection – which have caused her to be taken to the ER twice in the space of about a month – are at least partly due to methicillin-resistant (or multiple-resistant? I was taught methicillin in my bacteriology class) Staph. aureus, also known as MRSA.

I’d much prefer that she have this kind of MRSA. I brought my Salmonella GiantMicrobe to her ICU room when she was fighting that particular infection. I was, at the time, in the middle of an experiment for my dissertation work that involved diagnostic tests for Salmonella, which made everything that much more surreal.

Hopefully that snippet – it’s too short to be a proper anecdote – conveys something of the oddity of being a sibling scientist. In general, parents and sibs of people with disabilities become experts about those disabilities, especially if they are severe and if our sibs have barriers to acting as their own advocates. We are experts because our sibs share their experiences with us, because we have witnessed them for large portions of our lives. My level of expertise includes a lot of that, but is much, much greater in the academic vein.

In keeping up with the professional literature – the results of studies that scientists have successfully defended to panels of peers as worthy of sharing with the community as new knowledge – I get headlines and summaries about all sorts of conditions delivered by email almost daily, and I read the full studies for some of those. Multiple sclerosis and epilepsy usually catch my eye, of course, but when someone publishes a study that explains speech delays or cleft palate, I also notice. Other malformations of the brain during gestation, what happens in weakened or unusual immune systems. One journal has reference material for doctors every month, blurbs that help them to quickly identify major disorders that are obscure or otherwise important to distinguish. My own research includes some study of how infections happen (one of my favorite topics is how pathogens influence hosts over multiple generations, and how they are influenced right back by the hosts), so I frequently read about particular infections, or have to refresh my knowledge about broad groups of organisms that can be harmful to humans. I also study genome science, and a lot of genomes that people study are pathogens.

So when my sister had a Salmonella infection, or now MRSA, I may know more than my parents do about what she’s facing, even if they’ve talked to the doctor and I have not. Which, in fact, happened tonight – my mom joked that I was the person to call when I explained to her what I’d learned about MRSA in bacteriology. (Namely: some varieties of MRSA really are “superbugs” that don’t die when treated with any of our antibiotics, usually with the exception of vancomycin, a drug that doctors try not to use so they have a last resort. But most MRSA varieties are more likely to have one or more drugs that they can’t resist, so normal antibiotics kill them, even if they can fight off some of our strongest or most rarely used drugs. I don’t know how accurate this still is – my class was a decade ago! – but the CDC and Mayo Clinic websites make me think my knowledge isn’t totally outdated. ) And it’s always a bit odd, providing info that MDs either don’t know or haven’t shared. It’s extremely odd to understand, intellectually, so much of what is going on with my sister’s physical health.

I also find myself frustrated, frequently, that I don’t know enough about my sister’s health and body, from a purely academic standpoint. I don’t have training in, for example, anatomy – bones, muscles, nerves, connections – so I don’t know what I can do to help her feel better after a seizure, or how to help her walk more confidently. (Her normal mode of locomotion at home is crawling, or using her walker/holding someone’s hand/etc., but she’s not good at walking.) Very often I feel like I should be able to use my knowledge of biology to help other siblings understand things that they aren’t being told, or that they’re being told but incompletely comprehend.

At the moment, the fog of depression and the pressure of a writing project at work are taking up my “coherent writing” energy, so I haven’t been posting a lot here, but I felt like talking about this interesting set of feelings here. It’s fascinating to me that my sister’s disabilities were a major motivation in pursuing science in my young life, but I also realized when I was young that I had to form a separation between work and family to protect myself from becoming self-loathing if I failed to make sufficient progress in helping my family with my work.