The Florence Forth Road Race 2015

There is one month left until the Florence Forth Road Race!

Last year I posted about Florence Forth in the spirit of awareness and publicity; at the time, I wasn’t even sure that I would be making the trip to Durham and participating in the race. The stars aligned, however, and I made it – I ran (sort of…I finished the race at least), I was inspired by fellow autoimmune encephalitis survivors, and my team Fall Risk even came pretty close to garnering the spot of most donations.

This year my spirit for the race is invigorated by memories of last year. I wrote about some of those memories for the Autoimmune Encephalitis Alliance blog (x-posted here) in November.

For those of you who missed exactly what this event is, here’s a breakdown from the site:

The Florence Forth Road Race is a 10k run and 5k walk/run that will take place at 8am on March 7, 2015 in Durham, NC.

The Florence Forth race is organized by and for the Autoimmune Encephalitis Alliance. Proceeds from Florence Forth allow the AE Alliance to raise awareness, educate doctors and improve clinical care so that no one faces autoimmune encephalitis (AE) alone.

Florence Forth was started by Leslie and Will McDow who lost their daughter Florence on March 4th, 2012 after a long battle with autoimmune encephalitis.  Florence was a healthy, vibrant 2 year old when the first symptoms of AE emerged.  Over the next four years, the disease caused neurological complications and developmental delays.  The search for a diagnosis and eventually a treatment lead us to realize the need for increased awareness, improved clinical care and expanded research.

If you would like to participate in the race, you can sign up at FlorenceForth.org. Please register under the team name “Fall Risk” to support my team.

If you get anxious at the thought of running like me, or you just can’t see yourself making the trek to North Carolina in March, please consider donating to my team at the Florence Forth CrowdRise page by clicking this link.

Monthly Mini-Reviews – January

I am starting the new year with a new look to my mini-reviews (really just including the cover, but that’s a start!) and an effort to commit to five books per month – which I think is a very doable task. I exceeded five and managed to read two very different YA ARCs from Running Press Kids! So here’s what I read in January:

1. The Night Circus – Erin Morgensternnightcircus

512 pages / Anchor

Everyone had been talking about this book, so I decided to give Night Circus a try. Full of steampunk vibes and magic, it did not disappoint. Set The twins were the most interesting characters, although they were a side plot from the game. The romance between was a bit disjointed. I wanted more, but I loved this debut novel and I hope Erin Morgenstern writes more for me to read!

2. Anna and the French Kiss – Stephanie Perkinsannaandthefrenchkiss

372 pages / Speak

Continuing on in my effort to read more YA, I started with this delightful fluffy read by Stephanie Perkins. Anna and the French Kiss is pretty much your typical girl-goes-to-boarding-school-in-a-foreign-country romance, but the characters are likable, even loveable. Lola and the Boy Next Door is next!

3. The Unfinished Life of Addison Stone – Adele Griffinaddisonstone

256 pages / Soho Teen

Dead teenage artist Addison Stone is the star of this book, which is told in the form of a posthumous biography via interviews with the characters in Addison’s tumultuous life. Addison struggled with psychiatric problems before she left small-town New England life for the New York City art scene. The combination of creative genius at such a young age and love for the spotlight made her the perfect it-girl. However, caught up in a whirlwind of publicity and partying, she hit her high and then spiraled back into the manic, illusive nightmares of her own ghosts, and her death was clouded in mystery. This book has been getting a lot of hype, and I would definitely recommend it if you can handle the interview style of storytelling.

4. Spirit Junkie – Gabrielle Bernsteinspiritjunkie

288 pages / Harmony

In Gabrielle Bernstein’s self-help/memoir, the motivational speaker, meditation & yoga teacher, and vlogger describes her journey from PR party girl to blissed-out guru by using A Course in Miracles to find release from her old life. I really admire Gabby and hope to one day see her speak (at Wanderlust, perhaps).  I believe I purchased this book at just the right time in my life, since it has inspired me to take my own Course in Miracles.

5. When You Leave – Monica Ropalwhenyouleave

336 pages / Running Press Kids Advanced Copy, On Sale April 2015

Skater-girl Cass is trying to remain invisible at her new preppy, private school. She rushes out of class at the end of the day to meet up with her best friend Mattie and fellow skaters Gav and Franklin. But one day, she is rescued from detention by the kiss of elite prep Cooper – and as much as she struggles against her feelings, the two fall for each other, but keep their relationship under wraps. When Cooper is murdered, and Gav is arrested for the crime, Cass and her group navigate the prep scene to find the real killer and free their friend. I had a few problems with plot holes in the story (Mattie is mute due to cancer, but we never find out what the cancer was), but overall it was a fun read.

6. Seed –  Lisa Heathfieldseed

336 pages / Running Press Kids Advanced Copy, On Sale March 2015

Seed is another young adult novel I managed to devour in a day, about a girl named Pearl. Pearl is a member of a cult (she doesn’t know it, obviously) and lives in Seed. In Seed, everything is wonderful – everyone is happy and never goes hungry; they are guided and loved by nature; the men, women, and children all share the workload and make life better for those on the outside, sight unseen. Or so Pearl is led to believe. But when newcomers arrive, Pearl’s eyes are opened to skepticism and truth. She is drawn to Ellis, the teenage boy who arrived with his mother and little sister, and Ellis sees all that is wrong with Seed and their father, Papa S. The story opens with her getting her period and thinking she’s dying, which caused me to roll my eyes and wonder if I made a mistake in opening the book, but please don’t discredit it there. Seed was gripping.

7. The Ocean at the End of the Lane – Neil Gaimanocean

181 pages / William Morrow Books

As with The Night Circus, I felt like I was missing out by not reading something of Gaiman’s – and I had acquired this book for free from a swap at Main Point Books, so it was a great place to start. I read it in a day also (or less than that, since it was the same day I read Seed – the flu is a great opportunity to read). I really, really enjoyed The Ocean at the End of the Lane. It reminded me of a children’s horror story, and not just because the book is a reflection on the forty-year-old narrator’s childhood. It’s just so animated and vivid, and that’s what I loved. Anyway, our nameless narrator goes back to his childhood home after a funeral and visits the farm nearby his home. He remembers the terror of his childhood when a man killed himself using the narrator’s family’s stolen car, unleashing a string of events that lead the boy to the farm and a little girl named Lettie, whose family has generations of witches essentially. The evil comes out through our narrator and takes the form of his new nanny, who goes on to terrorize him until Lettie and her mom and grandma eventually save him from the various terrors that have been let out by this suicide. This might not be the world’s best description, but Gaiman’s writing kind of made me thing of Stephen King if he were writing in Dr. Seuss’s world. And it’s awesome.

Why I Don’t Live in Constant Fear

This month marks six years since I checked myself into the psychiatric ward at First Hospital Wyoming Valley. Coming this spring, it will be five years ago that I was diagnosed with Anti-NMDA Receptor Autoimmune Encephalitis – and four years since my relapse with the same disease.

www.samshuma.com

I am far beyond acceptance of what has happened to me, from the multiple misdiagnoses to the blood clot caused by treatment to the plain unfairness of having an autoimmune disorder. I’m no longer on any medication. I don’t need to have regularly scheduled scans. I’m not angry anymore. I’ve moved on. I am healed. However, one question that I’m asked fairly frequently, and a topic that I see so many others grappling with is but aren’t you afraid of a relapse?

My answer is simple. No. I don’t think about relapse for two reasons. The first is because I already have a plan in place with my doctor if I should ever relapse again. I am fortunate enough to have a neurologist who is experienced in and comfortable with treating ANMDARE. We have agreed that at the first symptom, whether it is something hugely physical or a miniscule psychiatric change, I will call her and go in for a rituximab treatment. We won’t wait around for scans and bloodwork; we will go straight to the treatment that has worked so well for me in the past. So I don’t have to worry about what will happen because this plan is on the back burner in case I ever need it.

The second reason I don’t bother worrying about a relapse is because I’m twenty-five years old and I need to live my life. A year and a half of my short time on earth was wasted while I was zombified on lithium and depakote during that awful psych misdiagnosis. I refuse to miss out on another second. Sure, I took my time getting back into normal daily life to make sure I was ready for it. Then I jumped back in.

When I was sick, I was single-mindedly focused on one goal: getting better. It took a lot out of me to fight for my life, but it was worth every second. Now that I’m healed, though, I need to focus on the bigger picture. That would not be possible if I was looking cautiously around every corner, afraid that I might end up back at square one. Constant worry is a waste of energy that for me could be better channeled into schoolwork, yoga, drinks with friends, enduring a 40-minute train commute, or reading a really good book. I stay positive as much as I can, but it’s difficult to be that cliche of “I almost died, so now I value every day of my life much more.” That’s because every day is different; every day presents new challenges. I will not let fear of something I have conquered twice now be one of those challenges. I have more goals to accomplish, like finishing graduate school, landing a career, writing my memoir, and growing relationships with friends, family, and Chris.

I intend to have the time of my life doing so.