Hydrocephalus: Gaining Insight, Part 2

When I got married and moved to Colorado, I had been used to being rejected at the first indication that there was something "wrong" with me. Every time I got sick, my husband was there for me. Every time I expressed the fear of being rejected or abandoned, he reassured me that he was not going anywhere.

Because my previous shunt had lasted twenty years, we fully expected me to not need another shunt replacement for the next 20 years. Because of this, I only shared the basics of the information about the condition. I told him what had happened when it went out in 2004, and a little bit about what happened after. Because I had shared this much, he was able to recognize when it went out again after just three and a half years, not quite 2 years after we got married. We were working at an airline together, and I learned that missing work due to health problems leads to losing your health insurance, because there is no paycheck to take the premium out of. Thankfully, Tim was able to add me to his insurance. I also learned that employers count on employees not knowing laws about losing work over illness. My manager threatened to not keep my job for me when I recovered from surgery.

I worked at that airline for two years, and in that time, I still felt the effects of that shunt failure. I had memory problems, trouble learning new concepts, and after almost two years, ultimately lost my job to memory issues that led to a major mistake. Nobody around me understood that any of this was connected in any way to hydrocephalus. I didn't even connect the dots until this year...

I started working as a caregiver for my aunt in 2015: first briefly in August while visiting, then permanently when we moved to Montana in October. This is a part-time job, but I have learned that I no longer have the energy to work full-time outside the home, along with the memory continuing to get worse.

After three pregnancies, I learned the effects that this has on a VP shunt. My shunt increased its flow to compensate for the added pressure on the tubing. Unfortunately, the flow did not go back down to its previous levels. As I am in the first generation to reach childbearing years with this type of shunt, this problem was fairly new territory to my doctors. Last October, I went in for another shunt replacement: this time, it was an adjustable valve, and leaving the previous tubing in place.

It has been nine months since that surgery, and I am STILL having memory problems to the point that I have alarms on my phone for EVERYTHING, because I can't remember what day it is. I am not allowed to drive without google maps, because on days the barometric pressure is up and down, not only do I deal with the headaches, but I don't recognize my usual routes and get lost. It is a scary feeling to go somewhere you SHOULD know from memory and have no idea how to get there, or to be on your own street and not recognize it.

To others, the condition is "fixed" and I should be all better. They ask when I am going to stop talking about it. This tells me they are tired of hearing about it. Others, when I do say that I am having a high pain or low energy day, say "oh, well..." This tells me they don't care or are just sick of hearing about it. Either way, it has taught me to lean on God, and not on others. People will let me down, but God says "I will never leave you nor forsake you." Hebrews 13:5b

"For you formed my inward parts; you knitted me together in my mother's womb. I will praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well." Ps. 139:13-14

Hydrocephalus: Gaining Insight, Part 1

Many people don't realize the widespread effect hydrocephalus has on a person. I have had hydrocephalus since I was a week or two old, cause by a fast and hard birth. In the first year of my life, I had nine VP shunt surgeries, and 3 eye surgeries to try to correct muscles that were damaged by fluid buildup. At that time, that particular shunt surgery was still new enough that the whole process of getting the right type of valve was still trial and error. My surgeries were at the time of the infancy of the autoregulating valves. Before this, valves depended greatly on gravity, which meant they didn't adjust to positional changes.

Because these valves were so new, and because it took so many tries to find one that worked for me, my family had no idea how long this valve would last before having to be replaced. Every time I had an unexplained illness, every time I had a sick headache, we went in to get it checked out. I can only imagine the stress that put on my dad. He used to call me his million dollar baby. That 9th valve that was placed just before I turned one thankfully, lasted until three months before I turned 21.

When I was growing up, I made it a point to not talk about my hydrocephalus. I was already the "weird kid." I was already an outcast. I didn't want to give other kids more reasons to reject me. In the locker room at P.E., I hid to change clothes, because I didn't want anyone asking about the scar on my abdomen. I had to be careful what activities I participated in, because we didn't know what the effects any impact to the abdomen might have on the tubing.

At the time of that dreaded shunt failure, I was in college and did not recognize the symptoms until it got to the point that I was not waking up for days at a time. I am amazed I passed that year of college, let alone with As and Bs. To stay awake in class, I was having to keep my hands busy. I did this by crocheting, and in the process, I made 2 full-size bedspreads. My professors were amazingly very understanding in allowing me to do this. When I went out, the cold winter air would help me stay conscious for long walks, but as soon as I got back into a warm building, I had to hurry as best I could to a safe place to collapse, to avoid passing out. I ended up having shunt replacement surgery less than a month before the end of spring semester and missed the rest of my classes. I was still recovering from surgery, and even still had the bandage on my head when I went back to attend my classmates' graduation, as was required of all students. I had not received any kind of excuse from this activity.

I went back to school the following year, but my memory was having problems. I was no longer able to retain information properly. I was no longer allowed to take my crochet projects to class. Nobody had any continuing sympathy: to them the condition was treated, the problem was "solved," and I should be fine. I could not figure out what was wrong with me, and why I was having so much more trouble with school if I was "better."

I met my husband that second year. We started hanging out non-stop, along with his roommate. Second semester of that year, on St. Patrick's Day, he asked me out. Three weeks and three days later, he proposed. Almost immediately, everyone around us tried to talk him out of marrying me, telling him about my surgery the previous year, that he didn't know what he was getting into, and that marrying me would be risky. They showed their true colors that day, and I started to distance myself from them.

I went back to school the following semester and had an even harder time in class. My dad and I had an agreement that the first time I got a D for a semester grade, I would be paying for the rest of school myself. Though my head didn't hurt, I just could not retain information, and did not do well in my classes. I dropped out at Christmas break, got married, and moved to Colorado.