An adventure in Cushing's and stroke

A few conversations I’ve had recently reminded me of a few things. Most importantly, my life used to be really boring. Well, my life right now is *still* quite boring, to be fair – I spent today reading papers on public space and drinking tea. I didn’t even have a proper lunch. And my evening was spent watching Britain’s Got Talent. But I digress.

Life used to be very stable and predictable, and I liked it that way. My favourite place was home, and I didn’t like leaving its comfort. I knew what I was going to spend the rest of my life doing (well, I had a rough idea of what I wanted, anyway), and who I was going to spend it with. I was very much of the “don’t rock the boat” school of thought.

And then I guess it changed a bit. My shiny new life philosophy is something like this: Dive in. Try everything once. Fit in as much joy and happiness and excitement as you can because you never know when you’re going to die. Don’t be scared. And don’t die wondering “What if?” or thinking, “I should have…”

This new philosophy has resulted in a bit more disappointment, and a bit more hurt, but you know what? It’s been worth it. Oh, sweet delicious life. How I love you.

I’ve learnt something in the past year and a half: men aren’t shallow as we sometimes think they are. And sure, my results aren’t conclusive because the sample size is probably a bit too small, but nevertheless, my evidence:

Two years and a bit ago, when my stretch marks first appeared, I thought they looked terrible. They were big and angry and bright red. I also thought that anyone who ever saw them would also think they looked terrible and would be repulsed and horrified upon seeing them.

Apparently not, though. The first person I kissed after Sam and I broke up was the first person since Sam who had seen my stretch marks (the first non-platonic person, I mean). I remember saying to him that under my clothes my body is really not that attractive, and that Cushing’s had done horrible things to it. He said he didn’t care, and we carried on kissing.

Since that time one and a half years ago, there have been a few more kisses, and a few more men. The stretch marks are still there, though not as red as they once were. None of the men have reacted in a way that I thought they would have two years ago, when they first appeared. None of them were repulsed, and none of them even cared (or at least, if they were and did, they did an excellent job of hiding it).

The sweetest, nicest exchange I had regarding this issue was this:

Me: You know, there are lots and lots of stretch marks still on me from Cushing’s.
Him: Does it bother you?
Me: No, I like them.
Him: Well that’s all right then.

I think I should have given men more credit. They’re really quite lovely.

I read this article the other day: An invention to stop cleavage wrinkles.

Apparently when you sleep on your side you end up with vertical cleavage wrinkles and this is a device you wear while you sleep to keep your boobs apart while you sleep.

I think I’m getting predictable, and you all know what my reaction to this is. For the record, my first reaction was actually “What? I haven’t noticed any cleavage wrinkles, and I always sleep on my side.” My next thought was “Jen, that’s probably because all the stretch marks would hide any of the wrinkles.”

And then comes the typical dismay at the existence of such a product. Wrinkles are cool, guys! They just show people you’ve lived! And okay, I don’t really have any wrinkles yet so perhaps my stance will change when I do, but I *do* have a lot of scars and stretch marks, and I wouldn’t change those. I love the stretch marks that are on my legs, waist, boobs and arms, because they all had a part in making me who I am. Besides, they’re kind of fun to play with.

I’ve finished the book that I mentioned in my last post. I’ve read quite a few stroke accounts, medical books, and newspaper articles since the stroke. Left Neglected by Lisa Genova is the closest I’ve found to what happened to me. There are a few things in there that make me think, “Wow, that’s me if I had a different life”.

There’s one scene where Sarah, the main character, is using the wheelchair. Because she isn’t aware of her left hand, she somehow gets her left hand tangled into the wheels of the wheelchair. I remember that happening to me in one of my physio sessions – it didn’t actually hurt, because I had no feeling in my left hand, and I jokingly accused my physio of sabotaging OT in the physio versus OT battle. It seemed that the people around me were more freaked out by it than I was – probably because I couldn’t feel it and they were imagining the pain.

Another thing that struck me was in that same scene – the physio was trying to get Sarah to use the wheelchair, and she was adamant about not wanting to use it or learn how. Because she was going to learn how to walk and recover fully. I had a very similar conversation with Sam – he was all for me learning how to use the wheelchair and gain a tiny bit of independence, and I told him no, I won’t need to know, because I’m going to learn how to *walk*.

And learn to walk I did. Left Neglected is a very, very good book, and spoke more to me than any other book has in recent memory. I think that I’m okay with reading books like that and hearing about and watching things involving strokes and hospitals because I know the ending of my stroke and hospital story. I don’t think I’d be as cool with it if the ending was different

I’m looking forward to Lisa Genova’s new book! (Though it’s still a couple of years away).

I’m in the middle of reading Left Neglected by Lisa Genova. It’s about a woman who suffers brain trauma from a car accident and she ends up with neglect – where her body physically is fine but her brain doesn’t register the left side of the world. She’s in hospital for five weeks, and she has to relearn how to dress, how to walk, how to put a bra on. She has to give conscious instructions to her brain to use and acknowledge her left side. She leaves things on her plate not because her eyes don’t work but because her brain neglects to recognise their existence.

Some of the OT exercises she does are awfully familiar, as are the physio ones. I read the description of the physio gym the main character is in and I am taken right back to Westmead.

What the character is going through is not exactly the same as what I went through. Her experience of neglect is definitely worse than what mine was. But I can’t deny that it feels a bit unsettling reading this. And another aspect that’s making me feel uncomfortable is the character’s husband. He is incredibly supportive and believes that she can do anything. He gave her a speech that was awfully similar to some of the things that Sam said to me. Which I suppose is quite normal, really – that’s what partners do.

Speaking of Sam, I haven’t spoken to, seen or heard from him in over a year. I found out from a mutual friend that he’s now engaged. Which I honestly do not really care about either way (good for them?), but I think maybe I should have chosen some different reading material. This novel is taking me back to 2008, and I really don’t want to be there right now.

I love to read. I love books, bookshops, the smell of books, the feel of books, and getting lost in a good book. I read when I’m waiting for trains and buses, in doctors’ waiting rooms, in bed, on trains and buses, on lunch breaks.

In the past couple of years, I’ve developed an interest in a new genre of books. For lack of a better term, I’ll call them medical literature.

The Brain That Changes Itself by Norman Doidge: I loved this book. It was a fascinating account about breakthroughs in understanding of how our brain works and how it can change. It’s not a machine like we once thought it was. It was written in a great way, too – it was simple enough for non-medical to understand, but it didn’t dumb things down, either.

The Diving Bell and the Butterfly by Jean-Dominique Bauby: A memoir written by a man who had suffered a stroke and only his left eye and brain was unaffected. Well his brain was obviously affected, but you know what I mean. This was written by blinking his left eye, spelling out words one letter at a time.

Every Patient Tells A Story by Lisa Sanders: I loved this book because you saw the other side. I’ve never had any kind of medical training, and my only perspective of the medical system is as a patient. Through a series of case studies, we see how doctors make their diagnoses and attempt to solve medical mysteries. I think this one is particularly interesting because Cushing’s seems to be a disease that so many doctors struggle to diagnose, even though anyone who has ever had Cushing’s can spot the symptoms miles away.

The Pen and the Stethoscope by Leah Kaminsky: Like the one before, I loved this one because it gives you an insight into the world and mind of the doctor. It’s a mixture of fiction and non-fiction stories by doctor-writers that cover some really fascinating areas. It was a great read.

See, not everything I read are mindless guilty pleasures.

I’m spending a lovely Sunday afternoon listening to music, drinking tea, and reading the paper. In the ‘personal finance’ section of The Observer I just read this:

Zoo magazine offered readers the chance to transform their girlfriend’s breasts in 2005. Text promoting the competition said: “How much do you love your girlfriend? Enough to give her the ultimate gift? One of rare beauty and class that will last for all of eternity and draw jealous, lusty stares from everyone else she comes across? Do you care enough about your beloved to bag her a prize that will transform her into a happier, more generous, intelligent, spiritual, interesting, witty, caring and politically aware version of the slightly second-rate person she is today?” Complaints to the Advertising Standards Authority that the competition was irresponsible because it could coerce women into having a serious and unnecessary surgical procedure that could cause physical and psychological damage were upheld.

…I can’t even begin to comment on how many types of wrong that original advertisement was. As much as I love my boobs, and boobs in general, I was never aware they had any impact on intelligence, generosity, wit or political awareness. It’s not as though it’s my boobs reading the Sunday paper. If a boyfriend ever bought me (or won me) cosmetic enhancement, he wouldn’t be my boyfriend for much longer.

And while I’m on the topic of things I read in the news, this was brought to my attention a few days ago: Fitness fanatic goes from size 10 to size 18 in weeks. What is wrong with doctors?! Rare does not equal impossible! Rare means exactly that – rare. It does happen. With the symptoms the girl in the article had, diagnosis shouldn’t have taken five years! That’s ridiculous! Were the doctors absent on the day they were taught about Cushing’s at med school? Am I being too harsh?

The end of the year always seems to be a good time for reflection. And I particularly liked this year. I tried writing an end-of-year post last year, but with no success. This year, I will finish and post this.

I kind of feel like 2010 was a “reward year”. It was incredible in so many ways, and it was what I was working for all of last year. I tend to shy away from my personal life on this blog (it’s easier to write everything as a body rather than a person), but I think for this to make any sense, a little background is necessary.

In 2008, when I was being diagnosed with Cushing’s, I was also researching and writing my Honours thesis. I also moved in with my then-boyfriend, Sam, and was working part-time. It was an insane and hectic year, and it was also wonderful because I had Sam and I was completely in love with him. He was the most supportive boyfriend I could have ever asked for, especially after the stroke.

And then comes 2009. I was discharged from hospital in January, and soon after that, Sam and I broke up. It was not a nice break up – it was long and messy and I was a mess. I decided to do the memorable challenge to raise money for the National Stroke Foundation and train for the cycle through Vietnam. 2009 became the year of training, fundraising, working full-time and getting over Sam. A lot of the time it felt that I was working so hard because I was setting up 2010 to be awesome.

One of the most important things I’ve learnt in the past two years is that I don’t have that much control over my life. I just have to do what I can and work with whatever I’m given – and accept that sometimes things don’t go the way I want. I entered 2010 with that lesson firmly in mind, as well as with a new philosophy of “Dive in. Try everything. You never know when you’re going to die, and don’t regret the things you didn’t do”.

And I would say that it’s worked pretty well. This year has been (somewhat haphazardly, I’ll admit) noted on this blog, but here’s a quick summary:

It began with the Parkes Elvis Festival in January, where I went there to do some research on home hosting.

I went to Melbourne then Vietnam in March. I cycled from Hanoi to Ho Chi Minh with a group of lovely and wonderful people. They left Vietnam and went home to Australia, and I went to Cambodia alone, and met three lovely Irish guys. I then went to Thailand, where I stayed in Bangkok with my friend Bron. I went to Chiang Mai and Chiang Rai, where I met more great people, including another Irish guy.

In April, I returned home for four days, and then flew to Africa. I spent five days in Cape Town, South Africa, and was amazed by the beauty of the city. I met some lovely locals, and then joined an overland group. Our group of 20ish people travelled in a truck through seven African countries, and we saw some amazing things. I developed a love for camping, went skydiving over the Namibian desert, microlighting over Victoria Falls, got bitten by bedbugs in Zanzibar, and took a few photos.

That was a 45 day overland trip, and in June, I left the truck but stayed in Africa. I volunteered at The Umoja Centre in Arusha, Tanzania, and it was a fantastic experience. I love the students, and the work that Umoja does. I loved that you could actually see that lives are being changed.

I was meant to stay in Arusha until April 2011, but left in October because I was offered a job in Southampton, England. I went home in October, and flew to the UK at the end of November. I arrived in Southampton on the first of December, and in the past three weeks, I’ve started work, gone on fieldwork, found a great place to live, and met some great people. I met someone new two days ago, and he asked me how I found 2010. I said that it was incredible (I may have possibly jumped and waved my arms about as I said that), and that night turned out to a very, very good one. A nice way to bring 2010 to a close.

This year has surpassed all expectations. It has been amazing. I hope you all have a happy and safe Christmas and new year, surrounded by love and food (the way it should be!)