Wednesday, June 15, 2011


Many people have told me I am an inspirational individual, and I believe them. What they may not know is where I get my inspiration from. How I manage to put one foot in front of the other some days even baffles me. I just get up and go from there. Keeping an open mind about the day and a careful watch on my spoons. But really, where do I get the inspiration to keep on going from? Even my mom admits most people in my situation would just take welfare and say “It’s too hard, I can’t do it, I’m going to die anyways so why even bother. No point in trying if I am so sick. I can’t possibly do anything with my life.” There are several things that inspire me: my grandmother, “you can’t” and “I can’t.”

First and foremost: my beloved grandmother. I might be a fighter but I am nothing compared to my grandmother. She was ill for over thirty years. Not only did she have an auto-immune disorder similar to mine, she was also a two time cancer survivor and had heart failure. This lady had no boundaries. Diagnosed with cancer for a second time, instead of giving up on college she attended every single class she needed to. I don’t think she was ever absent or missed a class. Even though she was battling cancer and was extremely sick. She graduated on time and just kept on trucking. A few years later she was diagnosed with a rare auto-immune disorder. Through the fatigue, surgery, medication trials and other various challenges of being ill she still managed to help raise my older siblings. Anyone who has ever been around small children for any length of time knows small children are spoon drainers. Then I came along. A young, youthful me filled with energy and trouble. One of my earliest memories of grandmother was visiting her in the hospital. She was having a therapy session with a physical therapist. The therapist wanted her to pick up coins and grandmother did. Come lunch time, the therapist went to open up her milk carton for her. Grandmother’s exact words “I can do it myself, thank you!” You see, grandmother knew what she could do herself and she was driven to do tasks even if she struggled with them at first. The therapist looked at her in a very odd way, like “lady you’re crazy” but he did let her struggle and she did finally succeed at opening up her milk carton.

Grandmother taught me the bulk of her lessons during my pre-teen to early teen years. I’ve never been very good at math. One might say math is my Achelles heel. So every day after school I was tutored by her. On one particular day, a few weeks into my 6th grade year I broke down. I screamed, cried, screamed nasty things at my grandmother, stormed off and well… really threw a tantrum. Instead of my grandmother coming back with as much fire as I gave her (I gave her an atomic bomb’s worth) she simply sat me down. Explained to me things I didn’t understand then. She talked about energy, effort, pointless tears and keeping on going even when the going gets really tough. At the time of this speech, I had no clue she was so sick. I knew grandmother was sick, but it wasn’t until I became very ill myself that I was told how really sick she was. At the time I blew off this speech. Didn’t matter to me, I had no lack of energy or tears. I was young, healthy and really didn’t have a care in the world. Now, I don’t go a day without hearing her voice in my head telling me “You just keep on trying, there will be obstacles and struggles. Fighting with them does you no good. Accepting them and working through them is the only way to make it Katyann. You don’t need to throw a tantrum to get there. Everything is for a reason.”

A year after the screaming match, Grandmother became extremely (gravely, deathly, etc) ill. But she fought for life until her 50th wedding anniversary a few months later (won the battle of living will power over statistics.) Once the anniversary was over, she yanked out the IV’s and said “I’ve lived life to the fullest, please let me go.” Right now I live for certain milestones in my life. I won’t name them now, but I do have a few big things I want to see happen before I kick the bucket. However I can say if I do get to the point of needing a kidney or any other organ transplant due to my lupus I will refuse. Grandmother set an inspirational example for me. She fought, she conquered and she also knew when it was time for her to say “enough.” For those very reasons, I will always rank my grandmother as my number one inspiration.

Little kids love “you can’t.” It’s an open invitation for the child to go off with a stealthy grin and do exactly what you told them not to. I guess I’m like a little kid. Waiting for someone to say “you can’t”, just so I can go, do it and make them eat their words. Doctors telling me “you can’t” do this or “you can’t” do that. In the end if it’s not going to kill me, I’m going to do it. Pushing the envelope is my brand of madness. Really instead of people saying “you can’t”, they should say “lupus can’t” stop you from doing anything. Case and point: pre-nursing. Let’s just say I’ve had a fair number of people give me flak about my choice of studies. Can I do it? You bet! I can and I will. Two to three years from now I will have to wear one of those silly graduation gowns again. But I will beam with pride knowing the people who told me other wise will be hopping around on one foot (the other will be in their mouth and they will probably be gagging on their words too.) Plus of course I will personally feel very accomplished for having a degree in my hand. It’s not just about watching people hop around on one foot but it is quite entertaining to see!

My biggest enemy is myself. Truly 100 percent swear to the Flying Spaghetti Monster is. Sometimes with (or without) my knowledge I can set up negative personal boundaries. These can cause me turmoil emotionally which translates into stress. Stress harms me physically and then the emotional stuff kicks in again. So in the end it’s a vicious cycle and that’s where the “I can’t” spawns from. Now, this type of “I can’t” is not the “I can’t go out in the sun, drive today or something medically legitimate like that.” I am talking about “I can’t do it because it’s too hard, it’s out of my norm or some other rather silly reason.” In the end I can and every time I do something I say “I can’t” to, I add a little more fuel to the personal inspiration fire. Sometimes I think this fire can be a little too contagious though, while I like to inspire others… the blender didn’t find my fire to be so motivating (I never say “I can’t” to torching an appliance.)

I pull my inspiration from many different sources. What I have discussed about above are only the top three motivators I have in my life. There are many, many more. Some I cannot even begin to explain. Most of my drive I credit my grandmother for showing me. She out lived the odds and achieved more than anyone ever thought she could do. My two hot button quotes “you can’t” and “I can’t” turn a little light on inside me. Once on, it doesn’t shut off until my mission is complete. Like I said, I don’t just do the challenges to prove people wrong but also to prove to myself I can do them. Anything is within your reach if you build yourself a tall enough ladder. No one can build it for you but with support and a good deal of inspiration, one can reach anything.

Tuesday, June 7, 2011

Reflection Upon Theatre

In this past year I have been blessed with the ability to try out musical theatre. I enjoyed it tremendously and it has helped me to grow. There are certain things that can only be experienced on the stage. I for one had a once in a lifetime experience today. In front of thousands of people I, along with the cast of “Urinetown The Musical” performed a short number at Benaroya Hall. The road to this glorious moment wasn’t covered in roses by any means. I would say my road through theatre had quite a few potholes in it, making for a rough ride.

Last year at about this time I signed up for the introductory class for Musical Theatre. I wanted to do it. My choir director warned me off the bat “It’s intense. I’m going to kill you. Are you sure you really want to do this? It’s hard work and lots of energy.” Yeah, didn’t stop me from going to the counselor’s office anyways. My goal in taking theatre was not to earn great awards or get onto Broadway; but to learn more about how a musical production comes to be. I had no desire to be the star but to get to participate in something I had always admired from a balcony seat.

On the first day of theatre, my one remark to my choir director was “I am ready to be murdered.” Of course with it came a big hug. During class he gave a big speech about the weakest links and all sorts of stuff. There were a few glances (eyeing’s) in my direction. I think the warnings given in the speech were ever so slightly hinting at “save yourself while you can.” Once I sign up for something, I don’t generally back out. I was doing theatre come hell or high water. Even more so I was determined not to be the weakest link or the unreliable one. Complications of lupus stand no match against my sheer determination to do something I want to do.

First semester was a tad bit rough. The class did not meld together well. I had to learn how to dance, act and sing like a theatre person. Getting up and performing zaps me of all my spoons. Especially trying to act healthy and pull it together when I’m really not. One of the greatest feats of theatre and having lupus is deception. To be dead on the inside but yet appear alive on the outside is one of the most complicated feats known to man. I several times achieved covering up my not so brilliant days in performance, but other times I failed at the feat. Never did I give up. Never did I say, “I can’t do this. I’m too tired. My body feels like it’s been ran over by a truck.” Instead I would try anyways.

Second semester is where the real test began. Putting on an actual musical and doing so without my health fully intact. I can say overall I enjoyed the process. However, some parts of it I was flat out miserable. My body would be throbbing, head foggy, joints aching and all those other fun things during rehearsal. Now, I only missed one rehearsal and only had to sit out part of one rehearsal. But I didn’t give up those rehearsals without a fight! Other than the two missed per say, I was there. I tried, I fought, and by golly in the end, I won. Lupus didn’t stop me from being in a musical and not just being the dead person. Though in the end of “Urinetown The Musical” I did die by toilet plunger blunt force trauma.

During the days of performances I was sleeping. Pretty much my life was getting up, performing, sloughing off theatre make-up and sleeping. I paid a price for every single show. Most mornings I would wake up with my body swollen and stiff. Overwhelming feeling of fatigue and a fair amount of fog. Looking back, the suffering was worth the price. Lupus doesn’t give refunds and the memories I have from theatre will be happily remembered for the rest of my life. For me theatre was a one-time experience. I cannot subject myself to the spoon draining effects of another show for possibly ever. Although I enjoyed it tremendously, I don’t have the tolerance to live in lupus hell for several months to be in another show.

I don’t know if I was the first person my director had who was chronically ill (especially with something as serious as lupus.) I’ll probably never know. Most people in my position would never even try to do what I did. They would view it as too risky or too spoon consuming. Honestly you can do anything you set your mind to. I set my mind to theatre and I did it. The obstacles are only as big as you make them. I traversed mountains (or at least physically felt like I had) and rivers to do this. It is possible. Keep your chin high, cut back on the whine and march forward. Eventually putting one foot out in front of the other will get you somewhere.

Both my director and my theatre friends were a huge part of helping me achieve my goal. They were there for me, cheered me on and helped to show me where the light switch was when everything was dark. Without the understanding from them, I would have had a much tougher time than I already did. Thank you for being there for me.

I now genuinely appreciate any play I go and see. I understand the long hard hours put into a production. The sacrifices people make to be in plays and most importantly how much energy it takes to do a play. As for murdering me… “I’m not dead yet~!”