Good afternoon readers, and happy New Year. I know it has been a few months since I’ve last posted, I’m sorry. I had a lot going on and it has taken me a bit of time to gather my thoughts and ground myself. I hope to be back to my weekly posts starting this week. Over the holiday I asked if any would be interested in a “question and answer” on the blog. To my surprise, that was an idea that a lot of you were interested in. Many of the questions were about the same topics, and generally, the focus was on three central themes: my personal feelings or life, my dating life and what impact my disabilities have had, and medical-related questions. So, I’m going to answer and organize those accordingly, and I hope that I answer your questions in a way that makes sense.
Let’s get started!
Personal questions about how I feel about situations.
- How do you remain positive with everything you have going on?
This was a question that came up multiple times, so I figured I’d discuss this one first. The simplest answer and the most honest is that I’m not. I’m not happy all of the time. I have bad days and good ones just like everyone else. There are certain environments and times of the year that bring up pretty difficult memories, December of last year being one of the most prominent, as of late. As I’ve gotten older and become more self-aware I am more readily able to understand what those triggers are, and what works (for me) to cope with them. That being said, sometimes I fall short and I isolate myself and retreat from the world. However, I’m beginning to see how destructive that is and how much of a toll it takes on the people that care for me and support me.
Healing does not ever truly beginning until you acknowledge something, accept it, and talk about it. A lot of people believe me to be positive all of the time, but that is neither true or realistic. Those people just aren’t privy to what happens behind closed doors or in the sanctuary of my private, safe places. For a more in-depth answer to this question, refer to this blog post (http://iammorethanadisability.com/depression-and-disability-no-im-not-happy-all-the-time/)
- If there was a cure for either of your conditions would you take it?
Again, this seemed a popular question, and admittedly it is one of the most difficult for me to answer. I have the life that I have, and perspective on the world, BECAUSE of each of my conditions. It is a part of my identity. In living with these conditions, I developed characteristics that are so ingrained in my personality, you could not separate me from them if you tried. That being said, the reality is I did once try to eliminate one of my conditions. There is no “cure” for Hydrocephalus or Cerebral Palsy, though there are interventions such as therapy, medicine, as well as surgeries that help to address some of the symptoms. In 2012 I made a decision with my medical team at the time, to take the steps to try and prepare for a procedure called: Endoscopic Third Ventriculostomy. Cincinnati Children’s Hospital explained it more simply in layman’s terms as “Endoscopic third ventriculostomy is an alternative surgical procedure that creates a bypass for the cerebrospinal fluid in the head that eliminates the need for a shunt. It is helpful only to people with hydrocephalus caused by a blockage of the flow of cerebrospinal fluid.” https://www.cincinnatichildrens.org/health/e/endoscopic (2018)
I am not a candidate for this groundbreaking procedure, as I am Shunt dependent, and trying to remove the shunt made me incredibly sick, and almost cost me my life.
I do not think I would want a permanent cure for my CP, either. Though, if I could live a day in the shoes of someone without it, I believe I would.
- What would you like your friends/family to know? How can we support you?
First, thank you for this particular question. It speaks to empathy, support, as well as knowledge and you have no idea how powerful that is. I suppose there are two things: be patient, as well as supportive. Patience will go a long way with me, though the irony does not escape me that I have very little of it myself. Be patient in my processes, as well as healing. Understand that sometimes I just need time: I may need more time than you to complete an activity. I may need time to process my thoughts. I am not intentionally trying to push you away. I have to first be able to understand what I am going through before I come to you. Next, be supportive, and understand that it may look different based upon my needs. If I am in the middle of a painful episode, sit with me. Talk to me. Don’t try to take it away, it’s an unrealistic expectation. If I call you to talk about it, don’t minimize what I’m going through. Just listen.
Dating and Romance
- Is dating with a disability different?
I have never been “able-bodied” so I can’t really determine if it is different, per se. I can say that my conditions are something that has to be acknowledged by my partner. This isn’t one of those situations in which ‘ignorance is bliss’. Before I go on a date with someone, I do let them know about my Cerebral Palsy, because I believe it is most fair for them to make the most informed decision. If they are someone that is made uncomfortable by that reality, they have the right to decide whether or not they want to entertain it. I’m not saying that it isn’t a difficult reality if they say no, but they have autonomy and I respect that. Otherwise, I don’t believe it is too incredibly different: they have to learn what is okay, what I need, how to communicate, and how to support me. I think that can be said across the board in terms of intimacy and dating, there is common ground there.
- Can you have children?
Biologically speaking, yes I have the capacity to reproduce should I ever make the decision to. I love the idea of having a family of my own, but I think at this stage in my life, it will be a family created out of love, not necessarily biology. My lower extremities are most affected by my CP. Each of my knees dislocates and I would be worried about my welfare and that of my child if I ever decided to have children. Personally, I would rather foster, or adopt, as opposed to having a biological child of my own.
- What are your diagnoses?
My primary diagnosis is Hydrocephalus, more commonly known as Water on the Brain. My secondary condition is Cerebral Palsy- Spastic diplegia. I refer to the Department of Health and Human Services for this description: “Spastic diplegia cerebral palsy is a form of cerebral palsy, a neurological condition that usually appears in infancy or early childhood, and permanently affects muscle control and coordination. Affected people have increased muscle tone which leads to spasticity (stiff or tight muscles and exaggerated reflexes) in the legs. The arm muscles are generally less affected or not affected at all. Other signs and symptoms may include delayed motor or movement milestones (i.e. rolling over, sitting, standing); walking on toes; and a “scissored” gait (style of walking). https://rarediseases.info.nih.gov/diseases/9637/spastic-diplegia-cerebral-palsy (2018)
- How many surgeries have you had, and does surgery scare you?
This was another question a lot of you expressed interest in. Unfortunately, it is not one that I have the exact answer to. In 2015, I had my medical records reviewed and between my two conditions, I have had 21 procedures. This includes Botox injections, orthopedic surgeries, as well as VP shunt repairs. As of today, I think that number is now at 24, as I’ve had three shunt complications since then.
Surgery has been something that I have had a lot of exposure to, so am I scared of them, no, not necessarily. I would say that I have a healthy respect for it. That being said, keep in mind that a lot of the surgeries I have had were immediate emergencies to save my life. I think that helped a great deal because I didn’t have too much time to think of it. I would say the part that makes me the most uneasy is when they wheel me into the operating room. I remember each time that I was aware, the room was sterile, it was cold, and I was alone (without the protection of my loved ones). Those thirty-ish minutes before the surgery, is the part I am most uneasy about. That has been the case for as long as I can remember.
- Has there been a memorable malfunction?
During the most severe malfunctions I am often in incredible amounts of pain, and because of that, I do not clearly remember those situations. I would say that in the last ten years or so there have been two memorable shunt malfunctions. The first, when I tried to remove the shunt in 2012. They were manually controlling the malfunction, hoping to provoke a biological response that would make that procedure possible. That was probably the most painful situation I can remember being in. The second occurred days after I moved into residence at university. I had been alone on campus for three days, I believe when the malfunction began. It was also the first time that my family was not in immediate proximity to me. That fact alone was what scared me the most. I was transported to the ER via ambulance from the university, and my family joined me shortly after. As scary as that experience was, it was important for me to go through. It demonstrated that I was capable of getting the help that I needed, the medical care necessary, despite living independent of my family.
Thank you for the questions! They were terrific!