Learn more about Dandy Walker syndrome
Sunday was the anniversary of a really good day. A great day, in fact. It was the fifth anniversary of the day I was admitted to Froedtert Hospital in Milwaukee, Wis., where I where I stayed for the next two months. I’m sure most people wouldn’t commemorate the anniversary of the day they entered a hospital for two months, but April 11, 2005, was a day that changed my life.
The story really begins five weeks early, on March 2, 2005, when I was admitted to another hospital, also in Wisconsin. (I’ll call this hospital “Hospital X” for the simple fact that I don’t wish to give them free advertising on my blog, for various reasons.) I had been sent to Hospital X from my home in northern Wisconsin because I was having headaches and the doctors suspected my shunt was malfunctioning. (I have Dandy Walker syndrome and hydrocephalus, which produce excess cerebrospinal fluid, aka CSF, in the brain. If the CSF isn’t drained with a shunt, it puts pressure on the brain and bad things can happen. Including death.)
It’s a long story, but while I was at Hospital X, I had a lot of other days that changed my life. On March 5, 2005, I went into respiratory arrest (“coded”). I was intubated, put on a ventilator and transferred to the ICU. On March 6, 2005, I was extubated, after which I promptly coded again. That was fun. During this time, the paralysis settled in and by March 8, 2005, I was paralyzed from the neck down, including my vocal cords. In other words, I became a quadriplegic. I couldn’t speak and communicated by mouthing words and using letter boards. (More on this in a future post.) I spent most of my time at Hospital X in the ICU and experienced many oh-so-fun things like cardiomyopathy, pneumonia, blood clots, a subdural hematoma and countless procedures.
I was really, really, really sick and for a while, they didn’t expect me to live. But of course, I did. In early April, I was well enough to be transferred from the ICU to the regular neurology floor as the social workers and case workers made plans to transfer me to rehab. At that point, I had been in the hospital for over a month. I just wanted to go home. The reality hadn’t set in yet that I was a ventilator-dependent quadriplegic who needed total, and I do mean total, care. And bless me, I thought I could go home to my mom’s house, where she could take care of me 24-7, because moms are super-human, right? Yeah, right.
So it was that on April 11, 2005, I was transferred from Hospital X to the Spinal Cord Injury Center at Froedtert Hospital in Milwaukee, where I spent a week in the acute care. The doctors did their own tests and determined that I had probably had either a brain stem stroke or a spinal cord infarct at the C4 level. After a week, I moved to the rehab side of the unit, where I stayed until I went home on June 9, 2005.
Being in rehab at Froedtert was one of the best things that ever happened to me. (It was unbelievably hard, stressful and exhausting, but still one of the best experiences I’ve ever had.) When I got there, the doctors expected me to be a quadriplegic for life. My physical therapist didn’t care. He decided he would make the most out of whatever time he had to work with me and little by little, just got me moving. By the time I left, I was walking about fifty feet with a walker. I had gotten a lot of mobility in my left hand and arm, thanks to my occupational therapist. The right hand and arm would come back later. My speech therapist rocked so I was even talking again, although I couldn’t swallow well enough to eat. That would happen later, too.
I left Froedtert on June 9, 2005. That was a good day, too. Hard, but good.
I wanted to write this post because I have spent the past month and a half in a state of remembrance. I’ve wanted to talk and blog about my experiences but it’s hard when I haven’t explained the back story. I plan to refer to this post in the coming days, weeks and months so I hope you come back and keep reading. Thanks!
Note: Today’s Women Living with Disabilities interview is with Ashley. a twenty-three year old writer and post-graduate student who has a special interest in social health issues. You can read her blog, Beyond Passing Time. Today’s interview is notable in that it is personal: Ashley has hydrocephalus and Dandy Walker variant, part of Dandy Walker Syndrome, two inter-related and very serious conditions I also battle with on a daily basis. From the bottom of my heart, Ashley, thank you for sharing your story!
1. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?
I have a Dandy Walker Variant (cerebellum malformation) and congenital hydrocephalus (I was born with excess fluid on my brain). The effects of the DWV have been more pronounced since I got sick last June. This condition affects my balance and co-ordination. It makes my legs fatigue and ache easily too. To correct the hydrocephalus, a shunt was put in when I was ten days old. The shunt is a tube that goes from my brain to my belly.
I have a learning disability called Auditory Processing Disorder (APD). It affects how my brain interprets sound. I have a hard time understanding oral instructions. My auditory memory isn’t very good.
I also have Inappropriate Sinus Tachycardia which basically just means my heart’s naturally too fast. I take medications for this, but my heart still frequently races. This makes me weak and tired and feel generally unwell. Stairs are hard enough with the DWV! The IST compounds the situation.
I also have mild asthma and severe environmental allergies. I have a long history of recurring sinus infections, hives and breathing issues.
I also have fused spinal discs in my neck and my spine is a bit curved around that same area. My neck is constantly stiff and sore. My feet are flat and they pretty much always hurt when I walk – for any length of time.
I have weak muscles behind my right eye, so I have to work hard to focus and hold my focus on things. It also makes me see things the same I would if I was drunk.
I also have a long history of getting sick with mysterious illnesses that leave me very weak and vomiting like crazy!
2. Do you consider yourself “disabled”? Do other people see you as “disabled”?
I’ve never considered myself “disabled.” I’m completely mobile and if I work hard, I can learn to do anything I want to. I finally learned to tie my shoes and swim unassisted in grade five and mastering these things gives me hope that I can master others! With special education help in math, I was able to understand it… And the patient directors of my school play helped me master their stage directions! My disability issues can make activity difficult, but nothing is impossible for me. For me, “disabled” means you CAN’T do something.
3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?
For the Dandy Walker Variant and hydrocephalus, my parents, teachers, doctors and therapists gave me many provisions to protect my shunt, try to prevent me from falling or getting injured and handle writing and walking fatigue. I feel like these provisions made my disability more apparent than the actual symptoms did.
4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?
I always feel sick for at least part of every day. I feel some sort of pain every day, whether from my neck, legs, feet or shunt. I tire or weaken easily. I opt not to do a lot of things I want to do because I know they’ll make me feel worse. I feel confused sometimes. I think about my health everyday.
I could never narrow it down to one thing because I have so many issues that affect me in different ways and in different situations.
5. What do you like about living with your disability/condition?
The APD has helped me fall deeper in love with writing because I am able to say so much more with writing than with talking.
I have become very attuned to my body. I feel that it gives me messages all of the time about what I need to do to be healthy and feel well.
I have become very patient with myself. I think about all of those times I had to struggle to learn something or complete a task that was difficult for me. Those times make me feel like I can do anything I want.
I am so aware that my health issues cannot kill me that I feel kind of invincible. I feel lucky to not have to deal with anything disabling or life threatening.
6. Is there anything else you’d like to share?
I’ve spent my whole life wondering when or if I should disclose my issues because I’m afraid of stigma. Sometimes I feel lucky that my disability is invisible because I get to avoid being defined by my issues. There are other times when I wish my issues were visible so that others will feel sympathy for me without me having to explain how I’m feeling or how my issues are affecting me. I have a hard time looking someone in the eye and saying “I’m having a hard time.”