Road to Independence

Life sure has a way of repeating itself over and over again.  These cycles occur based off the lessons that we need to learn while we are alive.  They also happen due to choices we make.  I have learned quite a bit in my thirty years of existence.

The cycles of my life tend to have a span of fifteen years each.  The first fifteen years were spent primarily with my mother.  I visited my father on Tuesday nights and every other weekend.  My mother was the one who took care of me on a day to day basis.  Due to having Cerebral Palsy, my mother babied me quite a lot.  I did not learn basic things a toddler would know until the age of ten. 

All of the surgeries that I went through occurred during this time period of my life.  My mother passed away in January 2001.  I had just turned fifteen years old five days before the event took place.  I have not had any operations since my mother passed away.  It is rather obvious that my mother’s existence within my life was to help me obtain the strength needed to overcome my surgeries.  Once all the surgeries were finished, then there was no reason for my mother to be a part of my life any longer. 

My father became more relevant after my mother passed away.  My father did not baby me in the same way that my mother had in the past.  I was a very sheltered person when it came to financial resources.  Every time I would ask my father about paying for something big such as a car or a college education, all he would say was “don’t worry about it.”  I should have taken his words as a clue that things were not as financially sound as he made it seem.  I should have been more intelligent for my age, but I let things stay as they were without question. 

My father passed away in July of this year.  My childhood home is up for short sale, and I am probably going to end up in a place where I do not want to be.  I do not have anyone to blame but myself for this outcome.  If I would have taken responsibility earlier in life, then I would not be faced with this situation. 

My parents were sources of strength in order to help me through the tougher times in my life.  My father’s health started to decline once I started pursuing my own freedom.  My first big step to achieving independence was coming out as transgender.  I got my name changed during the summer of last year.  A few months prior to this event, my father went to hospital for blood sugar issues.  I started to become more spiritually aware in February of this year.  As I became more spiritual, my father’s health went even further downhill.  As I became more independent, my father became worse.  This situation is very reminiscent of what happened after I went through all of my surgeries. In other words, after I achieved my independence from a physical standpoint, my mother’s health declined, and then she died.  Once my independence was strengthened emotionally and spiritually, my father passed away. 

Independence is the key word that sums up my life up until now.  One could also use the word freedom in my case.  My parents were used as a source of strength until I achieved my freedom.  Once a particular stage of independence was reached, then there was no need for a particular parent to play a role in my life. 

The first half of my life was geared toward achieving my freedom.  I am going to use the second half of my life to heal the pain of others in order to help them find a gateway to their own personal freedom.   I understand how hard it is to achieve freedom on various levels, and I know that I have the ability to help others in a big way.  This is going to be a rather difficult mountain to climb, but it will be worth it in the end.  I will feel a lot happier once following my life’s purpose.     

Difficulties with the School System

Going to school can be hard for anyone.  The classes can be quite boring.  The food in the cafeteria barely passes the standards imposed by the FDA.  Puberty has started, and you would rather focus on those changes rather than sit around finding the hypothetical value for X.  As a person who is gifted with Cerebral Palsy, I had some extra hoops to jump through in order to receive a proper education.

I cannot physically write as fast as those who are able-bodied, so taking notes down was rather difficult.  The schools were not very understanding of my needs whatsoever.  My mother tried to get each school to purchase a laptop for me to use, but the response as to why I could not have one was the same every time.  Each principle would say “A laptop is not in the school’s budget.”  The only option available to me was a one to one assistant. 

Most of the assistants that I had were not that terrible.  Looking back at everything now, they are the ones that got the short end of the stick.  These people only received about $7.50 an hour.  The amount of note keeping in middle school was ridiculous.  Teachers would actually grade your notebook for how organized it was.  My assistants always helped keep everything in order.    

The one to one assistant solution also carried over to high school as well.  I did not have the exact same person throughout my grade school career.  It was a different person every year.  I did not achieve complete scholastic independence until after I got my diploma and moved on to college.    

The only time I did not have an assistant was when I was in the sixth grade.  The middle school I went to put in me in the self-contained classroom with those who were mentally challenged.  The school was judging me based on the negative stereotype surrounding those with physically disabilities.  Not every person born with physical challenges has problems with his or her mind.  The principal only put me in a self-contained classroom in order to cover her own butt in case anything happened to me. 

Hopefully my time in grade school changed the lives of others.  Maybe I inspired some policy changes in the school system.  I doubt that this is the case.  The school system seems to be too big for any change to occur in a short amount time.  All anyone can do is try to make a difference, and then wait to see how things unfold. 

Are Concerts Worth it?

Concerts are always a difficult experience for anyone with a disability.  It is never a great idea to be in a room hundreds of people all crunched together.  Someone always gets hurt every time a gathering such as this takes place.  The bands that I saw firsthand were not that memorable.

The first band I ever saw live was the pop punk artist Green Day.  The band’s fourth album Insomniac had just come out a few weeks prior to this show.  I remember tickets being sold for fifteen dollars each.  I was only nine years old when this was happening, so my chances of actually seeing Green Day were rather slim.  This concert also took place on the first Monday in November of 1995.  I thought that there is no way my parents would let my brother and I go to a concert at all let alone on a school night.  The worst thing that could happen was that both parents tell me that I could not go. 

Things do not turn out how I am imagined in my head.  Both of my parents actually said that I could go to the Green Day concert.  I am sure that they were aware that this would be a one-time thing.  My brother and I even got to stay home from the school the next day.  Our father would be the one to take us to the show.  You could not be that with a stick. 

The concert was held at the Baltimore Arena.  I came to the concert in a wheelchair.  The security checked my body up and down for harmful substances; however they never bothered to check the book bag that I kept on the back of the chair.     

All three of us sat in seats that were pretty far from the band.  The members were a bit hard to make out, but the show was a blast.  Green Day played all of their hit songs at the time.  The set included tracks such as Basket Case, Geek Stink Breath, Welcome to Paradise, Longview, and She.  The only incident I remember occurring was a girl in the mosh pit being dropped on her head.  She must have been crowd surfing. 

I did not go to another concert again until the January of 2001.  This concert was just full of local punk bands.  The show took place in Towson.  The temperature outside was around twenty degrees on the night the outing.  My brother found out about this concert through some friends.  We showed up quite early for the show and had to wait about an hour before security let everyone inside the bar.  They stamped the hands of everyone who was too young to drink. 

The show began, and it was loud as can be.  There was no assigned seating like at the previous concert.  The place was just a huge mosh pit.  I was in a wheelchair during the duration of the gig.  I almost got knocked over quite a few times.  I became more nervous about being tipped over after each bump from another individual.  The show finally ended, and everyone went home. 

I also went to another concert up by the Salvation Army in Westminster during March of 2001.  The setup was very similar to the last show.  There were no actual seats whatsoever.  The entire place was once again one big mosh pit.  People came in contact with my chair a lot more frequently this time around.  One person almost knocked the chair over completely.  Most of the music was pretty good.  None of the bands stood out in any way.  I eventually went into the back room to sit in a chair away from everyone else.  I was not able to see any of the bands from this room, but I did not care anymore.  I just wanted to be safe. 

After going to three concerts during the first fifteen years of my life, I realized that live shows just are not for me.  I had the opportunity to go to a Pennywise show about a month ago.  I turned this down because I was afraid of getting hurt.  I do not avoid many things due to fear, but concerts just do not sit well with me at all.  A person needs to be a bit more careful when he or she has a disability.  Live shows are places where the ignorance level is rather high, so it is best for someone like me to steer clear of these events altogether. 

A Surgical Procedure That I Will Never Forget

Having a disability can be a huge burden during one’s earlier years.  Not only do have to learn how to overcome every day challenges that most people face, but you have to go head to head with issues that hardly anyone else knows anything about.  For me, this extra issue came in the form of multiple surgeries. 

I cannot go into detail about every surgery I have had the “pleasure” of experiencing, but I can give the details on a particular operation that remains stuck in mind to this day.  This experience was an even defined the end of the nineties. 

In the winter of 1999, my primary doctor discovered that the ball of my hip was coming out of its socket.  I was sent to a hospital that specialized in surgeries for those who are disabled.  I met with another doctor by the name of John Herzenberg.  He claimed that the hip ball on in the right leg would need to be put back in the socket correctly, or I would face complications later on in life.  After the operation was completed, an Ilizarov would be required to be attached to my leg for three months to ensure that hip ball would remain in place while my body healed.  The operation was performed on the thirtieth of June.

After the operation was over, there was quite a long recovery process.  The Ilizarov had pins on the side of it that went directly into my bone.  This means that my leg had wounds that could not heal until the apparatus was taken off.  I endured the device on my leg for three long months.  I had to clean my pinholes out twice a day.  Difficulties ranged from putting on pants to using the toilet correctly.  The mechanical devise was quite the monster, but it made for a good arm rest. 

It took my leg five months to heal completely after the Ilizarov was removed.  The ball of my hip still remains in its proper place to this day.  I will never forget this event in my life regardless of how much time passes.  Something such as will test the strength of an individual, but he or she be better off for the experience. 

Housing Challenges

Mobility is always an issue when speaking about those who are disabled. This is especially true when trying to obtain your very first apartment.  Most apartment complexes are built on multiple floors.  There are usually steps leading up to the front door.   Once inside, there are stairs leading down to a basement of some sort while another set leads to the second floor.  Cerebral Palsy makes it difficult to traverse stairs when a walker is needed to maintain balance.  Carrying other objects up or down a set of stairs is also a challenge as well.  An activity such as laundry is a difficult task to complete outside of an apartment complex.  This would mean than an individual would have to carry laundry to a set of stairs and then have to maneuver a walker once he or she reaches the bottom.  Yes, there are walkers with baskets that are built into them, but those are usually quite small.  The walker would also be a hassle to get down steps. 

It is just rather sad that most apartment complexes do not have special entrances for those with disabilities.  It is almost the year 2017, and yet housing options remain stuck fifty years in the past.  Hopefully my inquiries will prompt change to apartment complexes in the future.  Only time will tell if changes are afoot, but people with disabilities are faced with the challenge of trying to do things in a way that will not serve them in the long run.