Self-Pity Is for Sissies

It’s been a long time since I have written here. That is because I have been stuck in my own head having a no holds barred, pity party. It’s been pretty epic, and by epic I mean whiney, self-serving and completely pointless.  It is also, for the most part, completely out of character.

I am not one for pity; not for myself, not for anyone else. I am not the friend you go to when you have a problem and you just want a hug, a glass of wine, and some reassuring drivel about how ‘everything happens for a reason’ and how ‘it is all part of some grand design or master plan’ and ‘everything will be okay in the end.’ The only helpful thing that comes out of that is the wine. No, I am the friend that you come to when you have a problem that you are interested in solving. You’ll get the wine, and the hug, but what you won’t get is the pity. Instead, I do my best to help you come up with a solution. I will, however, only do this once. If you come to me the next month with the same problem, which you have done nothing to improve, the best you’re gonna get from me is a “that sucks”. A lot of people find this harsh or unkind. My friends (at least the ones that have lasted) know that I am coming from a good place; that I care about them too much to stand by and be a cheerleader while they do nothing but wallow in self-pity. They also know, that most of the time, I employ the same tactics to myself.

While I have been dealt some tough hands in life, I've never really been one to take them lying down. I have always been stubborn and have taken on challenges with an “is that all you got?” attitude. When I was in third grade, I had a surgery which resulted in my legs being in casts from ankle to hip. I somehow managed to teach myself to walk around my house with these casts on; I found being carried or using a chair to be too annoying. Instead of wallowing in the fact that I couldn't move, I decided that figuring out how I could move was the best course of action. Exactly twice in my life, I have allowed self-pity to take over: once in high school when I moved schools and felt so isolated that instead of finding ways to make friends, I retreated into myself. I began cutting and was severely depressed until senior year when I decided I was over the bullshit, made some friends and had a pretty decent year. The second time is now. Well not right now, but it pretty much started after my diagnoses.

This treatment has been the absolute, hands down, most challenging thing that I have ever encountered. Not just because of the treatment itself, but because the longer it goes on, the more it has been exasperating the things that were already difficult in my life. I have gained weight because of the meds, which is problematic for me. For years I struggled with a bad body image; additionally, the extra weight is making it harder to move and so much easier to fall. My normal aches and pains have become more intense and almost constant, even resting I am in pain. My muscles are fatigued and weak; I can no longer get myself out of bed without a struggle or stand for longer than five minutes at a time. There is so much more that I care to list, but in short, it’s been a challenge. A challenge which I have buckled under at almost every turn. Instead of telling myself the usual: That it isn’t that bad, that things could be worse, that this is only temporary, and that I should just keep on keeping on; I have been thinking about how hard this is, how unfair, how long 48 weeks is, and how I just simply cannot do it anymore. I cry and I swear and I throw things.

I know what some of you are thinking; that seems like a perfectly reasonable reaction. Perhaps it is, but is it solving anything? Is it making the 48 weeks go by any faster or less miserably? No. I knew this, but still I wallowed. And then real shit starting happening in the world. Children were shot and killed in their school; girls with their whole lives ahead of them were being murdered, my friends were losing loved ones expectantly.

And that’s when I remembered, no matter how hard things are, it can get worse. What I am going through really pales and comparison to what is happening everyday to someone else. In fact, what I am going through means that there is hope; hope for a cure, hope that 48 weeks of misery means a lifetime of better health. And so I am climbing out of my self-pity hole. I am not going to settle for “I can’t” or “it’s too hard” anymore. I am not going to be that sad girl I was in high school. I am going to be that stubborn third grader. I am going to do everything I can do. No more lying around and doing nothing. I might have new limits, but there is still plenty I can do, and I am going to do it.

Yesterday I vacuumed the first floor, did the dishes, cooked two night worth of dinner, took a shower and called my best friend. Tonight I have quilting class and tomorrow I am blessed to be able to spend time with both my father and my grandmother. Next week is my last week of Invicek, which many consider the hardest part of treatment. I can’t wait to start eating better, and trying to get a simple workout routine in to build my muscles back up. From now on, treatment is not going to kick my ass. I am going to kill it. I am done with worthless, pointless, lazy self- pity.

The Question of a Cure

A few weeks ago my sister was in town, and needed me to meet her at a church close to where I live to do her a quick favor. I met her after the service and we were all taken to a small office. Once all the official business was over the priest started chatting with my nieces and nephews, asking them about school and how old they were and all the things you usually talk about with children that you have just met. We were about to leave so I stood up and the priest looked first at my face then at my legs and then back up at my face again.

I knew something was coming. I was expecting maybe a “God Bless You,” because that’s what I normally get when someone looks at me like that, especially in or near a church. Instead he said, 

     “So, what do you have going on there?” I was shocked. Really? What do you got going one there? From an adult? In front of my nieces and nephews? I was there for my sister, and didn’t want to make a scene in front of the kids. So I bit my tongue and told him very politely that I had Cerebral Palsy.

     “Oh,” he said. As if he is somehow relieved. “Well, you know about those stem cells right? I mean can’t you do that? They take them right from your body! “

Every fiber in my body wanted to shout, “Oh my goodness I didn’t know, let’s get in the car and find a doctor right away! My suffering is over” But again, I am trying to be diplomatic, so I said,

     “The research is still being worked out on that, but I might give it a try when the time comes.” 

The priest smiled at me and touched my shoulder. He wished me the best and reminded me that when the time comes to use my own cells not the embryonic cells. Mom was holding open the open the door to the office at this point so I just smiled and nodded and we all wish each other a good day. Once through the door my sister leaned over and said,

     “For a second I thought he was going to perform an exorcism.” We all laughed and got in the car to head to my Mom’s for lunch.

This post, despite its beginning is not going to be about church, or religion. I am not going to go into the stem cell debate. The conversation did get me thinking though, because it was only a few years ago that I had stated publicly and adamantly that I would not take a cure for CP even if it was offered to me by John Travolta in a gold plated syringe. After all CP has not been a burden to me, without it I may not have the great friends I have, I might not have met Tom and I certainly would have never written this blog. I have always felt that I was meant to have CP. That it was not and accident of fate, but something I was given purposely.  And yet, I had just told this man, whom I had never met that it would be something I might consider.

Maybe I was humbling him; maybe I was just being polite. But as I left the church I was shaken a little by the idea that maybe it was the truth maybe I would take a cure. After 30 years of CP I can tell you that some days I am just tired. Tired of being in pain, tired of explaining myself to people who ask questions they really have no right to ask, tired of being stared at, tired of falling, tired of not being able to really play with my nieces and nephews, tired of trying to keep up, just tired. Some days I do want a cure. Maybe that makes me weak, but I don’t think so.

If wanting a cure makes me weak then not wanting a cure would makes me strong. I am not strong. I am just me living my life. My life with CP, not in spite of it. My life that allows me to help other people with CP see that anything they want is possible, to find the humor in even the most painful or embarrassing situations, to always look for a creative solution instead of giving up, to educate people, to put an end to the pity, and to write and share my story with anyone who wants to hear it.

So yes, some days I do want a cure, but if it never comes I will be okay. We will all be okay because I believe that we all are exactly who we were meant to be and a cure won’t change that.

The only thing I am ashamed about is not telling that priest to mind his own business; politely, of course.

100 Reasons Why...

In honor of March being Cerebral Palsy awareness month, I wanted to share something I posted over at LiveJournal on February 17, 2003. I was 20 years old. My perspective on my disability has changed a lot since then, but I still think this list is at least 95 percent true. Something to think about while reading: Everything on this list came from an actual experience. Many, of those experiences were not positive, but I was able to find humor in them anyway.

Since I posted it it has been shared (with and without permission) on various disability related websites and blogs. Every time I stumble upon it I am delighted. People have taken it upon themselves to change some of the list or add to it. I think it's awesome, because it's based more one my experience than a universal one. Here it is in its original glory:

One-hundred Best Things About Having CP

1. Cool toys.
2. Free money.
3. Random guys pick you up and carry you places.
4. Always the last person to be suspected of anything.
5. Never have to wait in line at theme parks or concerts.
6. Priority housing.
7. Everyone thinks you’re sweet and innocent (even if you’re not).
8. No strangers will ever confront you because they’re afraid of hurting your feelings.
9. When you run over people and tell them it’s an accident, they actually believe you.
10. You can get people to do things like cook for you because you’re in the chair.
11. Never have to take the stairs.
12. Hills are great fun if you have a wheelchair! (At least going downhill.)
13. People always look at you like you’re an inspiration.
14. Mad arm muscles -- you can beat guys at arm wrestling.
15. Double rides on all roller coasters.
16. Some teachers offer to help you out with notes, and you can show up late for class.
17. Every time you stand up, you can freak strangers out (or get an ovation from a crowd.)
18. Enormous bathrooms.
19. Shoes are an option
20. It’s a great excuse for anything! (It’s not my fault, It’s my CP!)
21. You can make spastic sculptures and pictures to keep your friends guessing.
22. You never have to worry about finding a place to sit.
23. You end up with mad wheelie skills to impress people with.
24. When your drunk people never suspect, they just think it’s the CP!
25. Time extensions on exams
26. You never have to do anything to get attention-- people are already staring.
27. Never having to walk to class.
28. Being able to “walk” with a use of a joystick.
29. ELECTRIC WHEELCHAIRS + CROWDS = FEAR
30. Developing a high pain tolerance is never a bad thing.
31. Never having to demonstrate a problem on the board during math class.
32. If you're slow people chalk it up to your disability instead of pure laziness
33. You can burn off every calorie you eat at lunch in one trip to a non-handicapped accessible building.
34. You could go out with a gaping hole in the seat of your pants and no one would notice.
35. No matter what kind of crap you pull no one will ever kick you out of Meijer.
36. Your wheelchair can double as a shopping cart you and your friends go shopping.
37. Handicapped Parking
38. An excuse to use the bumpers when bowling
39. Boyfriends give you lots of hugs, kisses and sympathy when you fall, which is often.
40. If people drop you or make you fall accidentally, they feel so bad that you could get them to do anything-- the question is will you?
41. No one makes fun of you for tripping and if they say “walk much?” when you do, you get to say "no".
42. People go out of their way to open doors for you.
43. Going to college is a HUGE deal, if you go everyone around you is amazed.
44. Parents brag about how “strong” you are.
45. You get to kill stereotypes on a daily basis.
46. You always have a lap to hold stuff on.
47. People part like the red sea when they see you coming.
48. Being bad at sports is a given, so as long as you attempt to do it, people are impressed.
49. You have more life experiences than most people you know.
50. Handicapped seating is usually in the front.
51. Never having to take classes like gym and shop
52. You can get out in the middle of class at times.
53. You can kick or hit people and claim it was a muscle spasm.
54. Free drinks at coffee houses because the people at the counter think you’re “sweet”
55. If you break something by running into it, or over it no one makes you pay for it.
56. You can meet the most awesome people when you have to ask strangers for help.
57. Fuck with the heads of all the people that want to “save to poor crippled girl”
58. You can have your friends do your hair and makeup for you.
59. The media loves you!
60. An excuse for bad handwriting
61. Everyone knows who you are.
62. You’re never too old for piggyback rides.
63. Your wheelchair makes a good walker for your injured friends.
64. You can get all excited about stupid stuff and people just think your “cute”.
65. You never have to act your age if you don’t want to because strangers think you should be immature.
66. You get to amaze people by standing and doing flips and tricks in the pool.
67. If you don’t have your chair with you, many people will scamper and offer you their chair.
68. You can single-handedly be the amusement of all your friends.
69. You get some great material for stand up comedy.
70. You learn to appreciate the small victories.
71. You are easily recognizable in a crowd.
72. You are not easily forgotte,n (Especially, if run people over.)
73. You can hide things next to you in your chair.
74. You can swallow pills without water,
75. You are popular. (Even if it is just ‘cuz you’re the “cute handicapped girl”.)
76. People like to party with you! (There’s nothing funnier than a drunk crip.)
77. You can use the word “crip” and not be referring to a gang member.
78. You never have to worry about getting your feet wet.
79. You can use those carts which the seats attached at the store, and make everyone wonder what the hell you’re doing.
80. No one ever questions your excuses.
81. Pain killers. (Paid for by someone else.)
82. Biker gloves aren’t just for fashion anymore.
83. No one questions anything you wear, do, or say.
84. Slamming into doors to open them is kinda fun.
85. You get praised for doing the simplest things. (THAT is amusing let me tell you.)
86. You don’t have to worried about people giving you wedges.
87. No worries if your pants are too big.
88. No need to take it personally when people call you a spaz. (After all, you can’t help it.)
89. You can get out of dissections in biology because no one trusts you enough to use sharp pointy objects.
90. Falling everyday gives you the skills to fall without injuring yourself.
91. No one messes with you (for fear of being run over or impaled with a crutch).
92. You can incorporated your wheelchair into your Halloween costume and go as a transformer
93. If you drop something someone else will pick it up for you.
94. You can in more circles in a smaller amount of time than anyone else,
95. You can invent fun CP friendly games (like sock tag and wheelchair skateboarding)
96. Braces make it so you don’t have to shave as often.
97. Your knees become numb after a while allowing you to kneel on hard floors or crawl without rug burns or pain.
98. Born with a talent for making “abstract” paintings.
99. You have great stories to tell at parties or gatherings. (This one time, I fell and….)
100. It just plain rocks and you know you’re jealous! (na na na na na na)

Haha. Some of these a ridiculous, but they ALL happened. Man, I miss college.

Disability: An Ingenious Way to Live

My favorite quote is from a man named Neil Marcus: “Disability is not a ‘brave struggle’ or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.” I first read it sometime during college when my poetry professor, after hearing some of my poetry related to disability, suggested I look at the work of some well-known poets with disabilities. That quote has been with me ever since.

After college, I even got a tattoo inspired by the quote and designed by my best friend:

It's a stylized handicap symbol with the word Ingenuity as the wheel. This was taken right after it was done. 

But even before I knew who Neil Marcus was, Ingenuity, process of applying new or inventive ideas to solve problems or meet challenges,  had been the key to living my life as independently as I could. All my life my other friends with disabilities would remark about how I was able to do things that they couldn’t do. It wasn’t that my disability was any less than theirs or that I was any better at being disabled. It was just that I knew that there was always a way, you just had to be willing to find out what that way was.

I think my Dad was the first person to show me how ingenuity could change something from impossible to possible. I think I was maybe three or four when my twin and I got big wheels for Christmas. Of course I couldn’t ride it, but I liked to store things in the seat and push it around the yard like a crude walker. Sometimes, when she was feeling generous, my sister would push me around on it. Then one day, my Dad used screws to attach a pair of old sneakers to the peddles. It didn’t work exactly the way we thought it would, but it was the first of many designs that eventually got me riding an adult tricycle by middle school.

Since then, I have been using a little ingenuity to get through my daily life. A few weeks ago, I came across a situation while sewing that required a little bit of ingenuity. For me, the hardest part of making quilts is the cutting. I used to do all my cutting while standing at the kitchen table, but recent back and hip pain, mixed with a new, higher kitchen table made cutting this way difficult. My solution was to take my cutting mat upstairs to my sewing room and put it on the floor, then cut on my hands and knees, giving me better leverage on the cutter and more control over my ruler and the fabric. I quickly realized that that position was helping me cut easier, but it was also putting too much pressure on my hips, so after trying a chair, and then a foot stool I finally came up with this:

A sturdy laundry basket, flipped over and covered with a towel for cushion. Please ignore my mess!

It’s almost perfect. It allows me all the benefits of cutting from the floor without putting pressure on my hips. But it does cause a small kink in my neck if I am at it for too long.

How I use it. Please ignore my hair. I think my next blog will be called Bad Hair Days, in which I post the crazy things my hair does on a regular basis.

Here are the fruits of my labor: 200 8x8 inch squares. Which now have to be cut into triangles. Oy.

What are some of your most ingenious solutions?

The Side Effects of Marriage

Side effects are funny. Sometimes they are horrible, sometimes they are a wonderful surprise and sometimes they are a mixed blessing. I never imagined that my marriage would come with side effects, but in the last 4 months of marriage I have discovered two awesome side effects: quality health insurance and not having to take birth control.

For the past five years, my health has not been great. I am not dying or anything like that, but for a long time I have been feeling like crap. In fact, I forgot I felt like crap until recently, when I stopped feeling like well, crap. This feeling came from two main camps my physical health, in regards to both my CP and what appeared to be allergies to just about EVERYTHING; and my mental health, in regards to low self-esteem   and my seemingly out-of-wack emotions.

The CP was understandable. I had not had physical therapy in over 10 years, and was on no medication, because previously it had made me sick. Well, after being put on Tom’s insurance, I finally made an appointment about my hip pain with a CP specialist, who prescribed me therapy and baclofen, a muscle relaxant used to treat muscle spasms.

After two months of physical therapy, the pain is not gone; but I can now manage it on my own. The baclofen is working miracles. I had to work through some horrible side effects, but it was worth it. I no longer drag my feet (cute, ridiculously expensive shoes, here I come!) and have experienced incredible increases in my range of motion. Many things that were painful or impossible before are now painless and doable.  The side effects are gone and I am hoping to be able to increase the dosage and get even more awesome results soon.

I am happy to say that I figured out the cause to many other things as well.

Five years ago, two things happened: I got a cat, and I began taking birth control pills for the first time. (I had previously been on Depo) I also began to have the following symptoms.

·         Severe mood swings (I switched to a generic form of Yaz and these improved but did not go away.)

·         Headaches

·         Headaches and nausea if I didn’t even every 2 hours

·         Severe Itching all over my body that wasn’t relieved by switching all bath and body products or my laundry detergent

·         General feeling of not wanting to do anything or go anywhere

·         Allergy attacks/cold symptoms  that would come year round and last about 24 hours at a time

·         Chronic Nose Bleeds

·         Asthma

·         Low Self Esteem

Well, after seeing the doctor several times and getting no real cause for any of these things, I attributed the physical symptoms to the cat(s) (even though I had never been allergic before and grew up with cats) and the rest of them to my chronic depression which I was diagnosed with in 2006. I resigned myself to feeling crappy because I didn’t want to give up my cats and I hated the side effects of my depression medications.

Then, in November, I told Tom I wanted to stop taking my birth control to see how I would feel, because several of my friends said getting off it helped them emotionally. I never tried this before because I didn’t want kids before we were married. And I don’t totally trust condoms. He agreed. I have been off it for 1 month and 2 weeks and have not experienced most of the above symptoms. The ones I do still have are markedly decreased. I have been doing a lot of googling and some of these are known side effects of birth control. Others are not listed officially but have been reported by lots of people on forums.

I am not a doctor and am not recommending baclofen or going of birth control to anyone, but man do I feel awesome! People keep telling me how great I look too. It’s funny how feeling great can make you look great too.

Marriage definitely agrees with me.