We all play a role in our families, often times more than one. Some fill the role of peacemaker, others the identified patient. Of course, these are not the only roles that must be at least subconsciously acknowledged, then fulfilled in some form.
These are the rules of family dynamics, and everyone plays, knowingly or not. As people and circumstances evolve, the roles re-order themselves to fit with change, whether change comes from the death of a loved one or a grown child moving far from home.
I am the identified patient in my family. It may not be my only role, yet it is the one that stands out to me the most. And as it stands now such a role, left unchanged, threatens my independence.
In an effort to explain what it means to be an identified patient without giving a detailed example about my personal life, I will use a character named Suzie and her parents to illustrate my example. Suzie has depression. Suzie's parents focus on her depression in a subconscious effort to ignore communication and marital issues they have been having. If you want to know how it feels to be the identified patient, well it doesnt feel good, it sucks actually and comes with a lot of strings attached. You often feel like the scapegoat which can also be accompanied by massive guilt.
My status as identified patient is not a temporary fixture in my life, rather rooted from childhood. With, doting, loving, overprotective parents. My role is greatly informed by CP. In fact, I am almost certain that my role would be different if Cerebral Palsy were not a part of my life. The role of identified patient is drawn out not only by the fact of disability, but by seven childhood surgeries, as well as countless hours of physical and occupational therapy.
The role I have in my family is still with me to this day, through my struggle with anxiety and depression. I am working to change my role within the dynamics of my family so that it no longer threatens my independence, but allows it to flourish.
Above all, I find this to be true: I will not succeed in such change alone.
Waiting for December at the DMV
Today was my 32nd driving lesson. I have been taking driving lessons for just over a year under the guidance of the same instructor. Today, instead of prolonging my timeline, she told me I would be ready to get my license in December!
Thirty lessons back, only my second time behind the wheel, my instructor and I were joined by a student of occupational therapy. The poor woman sat in the back seat, jolted around by my frequent, abrupt stops. At the time, I had no confidence in my ability to manipulate the hand controls...the all important difference between gas and brake.
Vital distinctions, yes?
One year later, my to-do list of things that I must learn has shortened drastically:
So far, I have never been able to keep my own time line for independence.
I will achieve this, and build from it to reach other goals, for within them I will find true freedom!
Note: For the inquiring minds that want to know, I will follow-up with a post including pictures about the anatomy of my vehicle and how it works.
Thirty lessons back, only my second time behind the wheel, my instructor and I were joined by a student of occupational therapy. The poor woman sat in the back seat, jolted around by my frequent, abrupt stops. At the time, I had no confidence in my ability to manipulate the hand controls...the all important difference between gas and brake.
Vital distinctions, yes?
One year later, my to-do list of things that I must learn has shortened drastically:
- Parallel parking/parking in general
- Three-point turns
- Five hour pre-licensing course
- More highway driving
- night-time driving
- PASS ROAD TEST
So far, I have never been able to keep my own time line for independence.
I will achieve this, and build from it to reach other goals, for within them I will find true freedom!
Note: For the inquiring minds that want to know, I will follow-up with a post including pictures about the anatomy of my vehicle and how it works.
Cerebral palsy linkfest
Blogs about Cerebral Palsy seem to be far and few between, and the field gets narrower when it comes to those which contain valuable, insightful and useful content. My favorite blog so far that I have run into is one by Eva, a 26-year-old with CP who runs a blog called The Deal with Disability. Her approach is self-aware and she takes life with a certain amount of humor. I imagine myself reading her blog for a long time to come.
Not unlike other people, I want to experience life without limits. Of course, it helps to have a support group that understands the way it is to live your life, not unlike a close knit village. It is important both for those who have CP and those who want to know more about it to have access to proper informational resources. It is also important to have access to the right kind of products and resources that make living with a disability more manageable. It is devastating news for new parents to find out that their child has CP. It is important to help parents through the diagnosis.
In certain instances the ability to network with others who have shared similar experiences can be invaluable. It is important to unite under a common cause of communicating with one another to spread awareness about CP. Cerebral Palsy is a neurological disorder which can be difficult to understand without the right information and even so, it is imperative to distill the information into something that can be commonly understood outside the world of medical jargon.
One young British boy, Tom Rogers, explains how he is perceived by the world and seeks to prove beyond a doubt, that through his web log via youtube, he can make a positive contribution to those who do not even know him.
The elephant in the room of my life
Cerebral palsy is my elephant in the room; one aspect of me, one fact that permeates into my daily life whether I take the time to notice or not.
Some days I see CP as only being as important as eye color. Other days the way in which it has framed my life and my perspective on the world is undeniable. Such a frame is not always negative, other times it sticks out like a sore thumb. My elephant has grown with my insecurities and shrunk with self awareness. You can throw a sheet over it, but life is not a magic act, the elephant won’t just disappear.
Some days I see CP as only being as important as eye color. Other days the way in which it has framed my life and my perspective on the world is undeniable. Such a frame is not always negative, other times it sticks out like a sore thumb. My elephant has grown with my insecurities and shrunk with self awareness. You can throw a sheet over it, but life is not a magic act, the elephant won’t just disappear.
In calling CP an elephant, I do not mean this as a source of shame. To use the expression "the elephant in the room," implies that there is something noticeable or obvious that no one wants to talk about. For me this does not automatically denote the idea of shame. The limitations and advantages that come with being born with CP require adaptation to circumstances and environment. CP is not a major part of my identity but a major part of my existence.
In this blog, I’m setting out to discuss my elephant; what people see as obvious, and the assumptions they make. More importantly, I will lend you a window into the insights of my life. The truth that reaches far beyond the sometimes wild judgments strangers make without knowing me, only stopping with queries such as, “What happened to you?”
In this blog, I’m setting out to discuss my elephant; what people see as obvious, and the assumptions they make. More importantly, I will lend you a window into the insights of my life. The truth that reaches far beyond the sometimes wild judgments strangers make without knowing me, only stopping with queries such as, “What happened to you?”
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