On the Hardest Parts of having a Disability

In previous posts, I have told readers of the perks that come along with my Cerebral  Palsy and the equally wonderful and scary responsibility that it gives me. I have written about, how fabulous my friends are, and told you the truth about what society assumes about the community of individuals with disabilities. In all those posts I have been able to put a positive spin on whatever challenges I am discussing. I do not do this because I am a Pollyanna, or an endlessly cheerful girl. I do not do this for the benefit of my blog-audience, friends, or family. I do this because I have to; in order to make it through the day without tears, I have to be able to instantly see the bright spots in a lot of dark places. I believe that all disabled people learn to do this early in life. It can get us into trouble, because our whole life can be crumbling around us and we almost don’t see it. That, however, is whole other post. I wanted to focus today, on the parts of living with CP, about which I can’t seem to see anything good. I figured it would have a helped me, a few years ago, if somebody had actually said it aloud.

1.       It’s almost impossible to get through a day without being exhausted. This was not a problem when I was a kid. I had just as much energy as my able-bodied sister and playmates. As the years go by however, disabled bodies get sick of working three times harder to have the same amount of fun (Yes, there are studies proving that I must exert triple the energy  my sister does to complete the same task). I still want to enjoy my life though, so I ignore my sleepy body until it screams.  My family and friends are also used to the going-doing Cathleen who they knew and loved, so sometimes they cannot understand my level of fatigue.

2.       I always have to prove to other people that I am typical person. I have already discussed rebuking the assumptions society makes about people who get around differently. I have mentioned in various posts how impressed I am by the people in my life for looking past my disability. I am impressed because it is rare. The funniest assumptions are made by strangers, so those are the stories that get told the most. However, there are many people who I have known for years, people who I once considered close to me, who think about my disability first every time they think about me. That is beyond hurtful and not at all humorous.

3.       I live in fear of burdening others and I have my entire life. “So and so shouldn’t have to help me into this car.” “Why didn’t I just bring my walker?  Nobody would have to push me.”  “I should have brought my chair, I’m walking too slowly.  So and so must be annoyed.” “I really made Maggie’s childhood harder?” “If I get fat, people will have to help me with even more.” “I cannot tell my parents how So and so treated me today, they’ll worry.” etc, etc,  It is a stupid and self destructive psychological tape that plays consistently (not constantly) in my head and  it increases in volume as I get older. It has spilled into and messed with aspects of life that have nothing to do with my disability.  I have talked to therapists about it, to my mom about it, and to dear friends about it. There is seemingly nothing I can do but ignore it.

The list of things I hate is  short but daunting none the less. Please notice that this list is written in the first- person as they are the things that I cannot seem to get over. I speak for no one else.  If anybody reading does not agree with me or thinks that their list would include more significant drawbacks, visit my Disagree with me Page. I'd love to publish your thoughts. 

On The Day the ADA was Passed

It’s the 22^nd Anniversary of The Americans with Disabilities Act. That is pretty exciting stuff! This means that there is an entire group of adults who have enjoyed its many benefits for their entire lives. In comparison to a lot of other important civil rights movements, the movement to give equal opportunity to those of us with so-called special needs is pretty young.  This isn’t surprising only 0.62% of Americans live with Physical disabilities for the majority of their existence—and it is sometimes more difficult for those with multiple challenges to advocate for themselves. I am so glad somebody finally paid attention! I am from a beautiful country.  No other nations have the types of laws that the US does, and it’s 2012. Hopefully that will change soon.

I have read many blogs celebrating the ADA in their own  way today. I have Cerebral Palsy and my friend Melissa will tell you, we’re all connected. :) I knew I wanted to make a statement, but I could not decide what statement to make. That last sentence should shock nobody; I am the world’s least decisive dweller. Well, I didn’t make a decision. I am going to attempt to make three statements in one post.      One should always be true to their character, right?

I want to copy Melissa in making a statement about the individuals in my life. Don’t worry, I have been copying her for more than a decade, she likes it now.

I come from the best group of people I know. My family is very strong, very accepting, very funny, very loving,   and very independent.  Being somebody who needed extra help in my family wasn’t always easy. I often felt awkward, mainly because of my own insecurities, I am sure. It took me a long time to realize that my family didn’t think anything horrible about me. They only criticized me because they were worried about my ability to succeed. And, they should have been, for a long time I was failing. Whether or not that had anything to do with my CP, at this point is anybody’s guess.  So for those of you out there who feel like the people who should be the most understanding are the least understanding: I know that when life is already unfair, because of nothing you chose, you want want loved ones to coddle you, just occasionally. However, it’s your family’s job to ensure that you can contribute to society, and most of them do that in any way they know how, because they love you. Most of the things that were hurtful to me when I was younger, I find hilarious or helpful now.  The ADA is a great law, but it can’t do everything for you, and it won’t.

For every person in your life who kicks your ass into gear though, you need someone who is willing to cut you some slack. And for that, you go to camp.  Seriously! I wish everybody with a disability had the privilege to spend one week a year at Indian Trails Camp like I did for seven years. ITC is a camp in Grand Rapids, MI, for adults and children who are disabled.  It. Was. AWESOME.  Everybody moved slowly and nobody cared. Boys were interested in you because they could not walk either, and you could participate in sports without in being pointless.  I met some of my favorite people there including the counselors, who all seemed to effortlessly ignore our mobility-aids.  I hope that in the near future places like ITC become affordable for everybody. That would be wonderful, even more wonderful than camp.

I cannot tell you how rare it is for someone to effortlessly ignore a mobility-aid. Most notice and focus it immediately. I do not blame them. That’s why so many of my friends amaze me.

My friend Michelle was the first person who ever admittedly forgot about my CP. I was whining about “being different” and she stop me mid-story and said, “….How are  you different?” Michelle and I are like sisters, we fight and make-up, but none of it ever had to do with the way I walked. She never thought about it.   

Michelle and my other friend Candace,  are probably the most accepting people I know. Candace and I lived together for two years and she was constantly forgetting I was disabled. In fact, there is a pretty funny story about someone reminding her of my disability and her almost losing it. Candace has always thought of me as equal to everybody around her. She and I took care of each other as roommates, but I never felt like she was stressed out by taking care of me. I think seeing people for who they are must be genetic, after years of friendship, I attended a Halloween party with Candace’s family. Not one person even inquired about my disability. It may have been because she had talked about me previously, but I was still pleasantly flabbergasted. That had never happened before. I have been around them a few times I still haven’t been asked about my disability I don’t think they care. It’s fantastic.

 Candace’s family party was the second time I had felt that way. I remember my freshmen year of college, I asked my friend, Annie, to zip up the back of whatever I was wearing.   She looked at me and said “Well, come over here.” I was on her couch and my walker was across the room. We both laughed. The entire group of kids Annie I hung out with freshmen year, treated me the same way. It was the first time a circle of friends had accepted me collectively, and I’ll never forget it.

Lots of my favorite memories at college include, Alex and Sam —two more of my former roommates. I remember being so nervous, after living with them for just a short while to ask, Alex to help me out of a closet I somehow got stuck in. She shouldn’t have had to do that. Alex burst out laughing, and become a running joke, not because of who I am, but because of who she is. Sam is the same way. We went to a house party once, and even in my drunken stupor, I was afraid we wouldn’t be friends with me the next day. The poor girl had to help me in, help me out, and help to  the upstairs bathroom all well I was obnoxiously apologizing her over and over. The only thing she mentioned the next day  was that she had to break into our apartment because she was afraid I was assaulted by a boy I had made-out with at the party.   Again the strength is Sam’s, not mine.  

The friends I have discussed in the preceding paragraphs, probably would call me silly for writing all this down. They think of me as an ordinary woman.  The fact that the Americans with Disabilities act is only 22, however, proves that their thought process is novel, and they should be proud.

How’d you like that tie in? I majored in English!

Reflecting on my family, my friends and my opportunities, sure makes me feel fortunate.  Being born in a time in which the ADA is in place to make even bigger dreams possible make you and me even more blessed. HAPPY ANNIVERSARY!

On Tragedy, Heroes and Thankfulness

Twelve innocent movie-goers were murdered and fifty-eight more were wounded in Aurora, Colorado during the midnight showing of the newest batman film this Friday, July 20, 2012.  My heart is with their loved ones in the wake of this tragedy. I hope against hope that they are able to see beauty in the world again soon.  I also feel horrible for the friends and family of the very disturbed man who did the shooting this weekend.  I hope against hope that they do not torture themselves for not being able to recognize or correct whatever is so incredibly wrong with him. 

Several  mental-health professionals have flown to Colorado to offer assistance to those who were traumatized. They appeared on television to remind us that you didn't have to be in or near the movie theater to be on that list.   Ask your friends how they are doing, make sure your children are eating and playing like the normally do. Have a family meeting and talk about your reactions and feelings after watching the news. Perhaps there is a charity your family can donate to or participate in so that you can all feel like your being of some help. Feeling helpful allows children to deal with emotional trauma more efficiently; study after study confirms this. Everyone reading this should know that is okay to be sad, confused and even angry. I have certainly experienced all of those emotions. 


In my last post, I told my audience that responsible writers disclose any biases they may have. So, before I go on,  I must tell you all that there are two things with which I am struggling while writing my feelings about this unnecessary, terrifying massacre:


1. I have a profound interest in psychology and mental-illness. I could do research on James Holmes and his crime and post  my relatively  uneducated opinion on why this killer killed. I would like to do that, but I refuse to because he may have the twisted goal of becoming famous or infamous for this. I will not be a part of helping him achieve that goal. 


2. It is difficult for me not to get political. The internet knows what movies I watch, and where I buy my bras,  but this man got away with buying deadly assault weapons and 1,000 bullet magazines online without it being reported. That is confusing and disgusting to me. I fear, however  that if I write a post that sparks a debate about gun-control, it will no longer be a post honoring the victims who I wrote about in my opening paragraph. I also haven't done a lot of research on Colorado's gun laws, and try not to get into debates I can lose. At least not publicly. 
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I heard a senator say that his mother taught him to look for the heroes in every tragedy. What brilliant advice! Those heroes are who deserve to be written about. An entire community was brutally shaken on Friday, their resilience and strength, deserves to be noted again in print.

Two of the victims are dead because they were protecting their girlfriends, and one passed away protecting his daughter. These three amazing men, teach those of us left on earth that perfect love really does drive out fear. (1 John 4:18).  Maybe the loss of them will remind us to hug the important people in our lives tighter, and speak to them more kindly, too. Life is extremely brief, there is no point in living it in fear instead of in love. The police-officers, first-responders, and firemen and women who arrived on the scene within in 90 seconds, are great examples of living in love. They have devoted the time they spend away from their families  to protecting other families. There is nothing better or more selfless than that. I pray that those around them tell them daily how special they are and that we , as Americans, realize how valuable all of the emergency personnel in our country our, and start paying them what they are worth. 


The citizens of Aurora, and obviously a very strong group. Candlelit visuals immediately followed the shootings and local nurses and doctors gave up  their time to ensure that the living victims in Colorado would recover as soon as possible. A local teenager, gathered as many friends as she could find, to take them the movies  Saturday night. She decided to show her fellow citizens  that heinous acts of violence cannot be allowed to stop us from having the fun we all deserve to have. Hopefully, we all can understand and appreciate that message. 


Heroes are everywhere and many of them were made early  Friday morning.   I sincerely thank them for restoring my faith in humanity, and for showing us all that good usually wins.  

  


      

On Biases

Two of the individuals who read my pathetic little blog regularly, asked me about my religious beliefs. Honestly, I wasn’t going to answer this question; I do not really know what religion I most closely follow. There are some things however that I do believe firmly. I realize they could slant what I post here. I believe that when a good writer has a bias they disclose them.  So here are the short list of things  I think I know for sure:

1.       Nobody knows what happens when you die, not definitely. Lots of people have faith that different scriptures contain the truth, but everybody who vehemently disagrees with them has faith in another scripture.
 

2.       Jesus was cool. I have read several books. None of them star a protagonist more thoughtful, peaceful and logical than Jesus Christ. So though I cannot say he if is a messiah, or a savior and I think too many pollute his message, we can learn a significant amount from his gentleness.

3.       Nature has powers.      At least nature has power over me.  When I am outside where I used to sit with my grandpa, I feel his spirit. When I let rain touch my skin, I want kiss someone.  I see fireflies and instantly become five years old and catch them. The crunch of fall leaves under feet is one of the happiest sounds.

4.       Love is all you need. This isn’t just listed because The Beatles are the best band of all time, but also because I get through really difficult times by believing that love is what motivates people’s good and bad behavior.  Good or bad—if it was done with love, I can excuse or understand it. We all need love.

5.        Manners are common sense. Nobody is going to like everybody. Some people just do not connect. That is no reason to be discourteous. Most people know when they are being discourteous, and the others will make amends when it is pointed out.

6.       Everybody in my life (and yours) is meant to be there.  A line in the Song “For Good” ,in the play Wicked, said it best. “We are led to those who help us most to grow, if we let them… and help them in return.”

7.       Equality matters. Everything you can do, I should be allowed to do, and vice versa. It doesn’t matter who you are or who I am.

8.       Humor heals. You can survive the worst, if you can laugh about it.

9.       Being a good friend is the greatest gift you can give yourself. You get good friends back. 

On Loyalty

Over the last couple of days I have been told that in the last year I only have had wonderful or mushy-gushy things to say about my friends, even when they aren't being very nice to me. Well believe me when I say, I notice when people are unkind to me, and at some point, I usually do complain about it. I try not to complain to people who have to interact with whoever hurt me on a regular basis, not because I am super nice, but because I know I will be over whatever issues I have soon, and will  want resume our normal relationship. This can make things awkward for whoever just heard me gripe and makes me appear disingenuous.    I have learned my lesson, and do my best to vent outside of a person’s circle of friends. I am not being phony. It is just hurtful for me to lose contact with people and I would rather just move on.

Why is it so frightening for me to let go of friendships?  I have made plenty of unbelievable mistakes. The worst were letting friendships end. I have a lot of people in my life who are interesting, and fun to be around. I only have a handful of people who, when listing people dear to them, would include me.  I need as many of them as possible, we all do.  They are irreplaceable, and I learn that are less of them every day.

Speaking of people who I love, my fabulous friend Melissa, who has been there for me through the thick and very thin of the last 12 years, entered a contest that may award her money and allow her to blog for Real Simple Magazine. She is a great writer and deserves this byline. Please click here to vote.

Melissa is not just a great writer; she is a marvelously loyal friend. She has screamed at me, and I have said and done horrid things to her. We have fought, and disagreed and worried. That’s not what I think of when I contemplate our friendship, though. I think of the compassion and the humor that has always been present between us, no matter where we were in our lives. I think of the memories I would not have without her, and the forgiveness that she has selflessly given me.  

I want you to think about how many “Melissas” you have in your life. How many friends can you say truly need and accept you? I have eight—maybe. Some are new and some old. I talk to some daily and some sporadically, and they all have personality flaws and personality accolades, as I do. I do not see how shortening that list of people can be in any way beneficial. It is as comforting to be a good friend as it is have one. I am not going to give up on any of my friends due to anything less than intentionally-caused catastrophe. Not again. I think it would just be a stupid choice.   

On My Responsbility (and yours)

It really used to annoy  me when friends and family would insist that I would be a great advocate or voice for the disabled community, and that I should spend my life being that voice. I have one aunt in particular, who constantly mentioned that I should be a politician. It didn't matter  that she agreed with none my politics. I guess I became incensed because I felt like they were writing off my ability to build my life around something other than Cerebral Palsy. I have always been a big dreamer, and until recently, I could walk in all my day dreams. I have never been very quiet when dreams were challenged either. Over the last couple of months though, I have had to grow up a lot.

I still have no desire to enter the political world. It seems like an intriguing, but dark and twisted place. I still don't believe that it is in any way my responsibility to educate the masses on the peaks and valleys of life with mobility-aids. If you're ignorant enough to assume you know anything about me because of the way in which my disability forces me to navigate the earth, you are not my problem. I do have some responsibilities though, and I certainly would  not have them without my CP.  


The way I look at it, we are all in this life together:  If it is easier for some of us it is easier for all of us. With that logic,  the 5th grader who limps into class, wondering if she'll ever get the teachers to realize how smart she is, is my problem. The teenager sitting in a wheelchair wondering if a boy will ever kiss her  is my problem. The college freshman who wonders if she'll ever graduate, or even get into a house-party is, my problem. I have dealt with all of that, and answered those questions. Refusing to volunteer my experiences would be selfish.   If I can write or say something that will make somebody's day easier, I am improving the quality of our universe.  If I do not do that in some way, what in the hell am I here for? I can certainly speak to issues that have nothing to do with CP. The point is however, I can no longer leave my CP out, simply because it pisses me off that others expect me to talk about it. It's not about me-- not all of it. I have to build my life around the legacy I want to leave behind, and rather I like or not, part of that will be Cerebral Palsy.