Contributed by Guest Blogger of the Week, Shay Gines.
We all have a unique set of challenges that shape our artistic abilities and choices. We learn to work around them when we need to and sometimes use them to propel us further or focus our efforts.
I have a disability. It is true. People who have worked with me or know me have seen its effects and know my limitations. People walking down the street would have no idea. You yourself may have noticed something weird but couldn’t put your finger on it.
I have chronic joint disease. It is a very tenacious form of rheumatoid arthritis. It is an autoimmune disease, which means that my body is basically attacking itself. I was diagnosed with it almost 15 years ago. It is also a degenerative disease, which means that it could (probably will) get worse over time.
I have not always had this disability. I was already well on my path to working in and completely being in love with the theatre before I was diagnosed. I was trained as an actress. I attended a rather rigorous four-year program that emphasized character development/embodiment including a lot of physical work and years of dance classes to boot. I’m not sure if the disease had manifested itself earlier in my life if I would have made the same choices that I did, but it has certainly changed my work in and my outlook of the theatre.
In the beginning, there was a lot of pain and I was completely unprepared to deal with what was happening to me both physically and psychologically. Within a matter of months, I went from being a strong, healthy, confident young woman to not being able to get in or out of the shower by myself or button my own shirt or turn a doorknob. I had trouble spraying hair spray and standing up from a chair. It also took almost a year to figure out what was wrong with me. Maybe it was Lyme Disease. Maybe it was Lupus. Maybe it was something else. They didn’t know.
Once I was finally diagnosed, there was another year of experimenting to find the proper “cocktail” of medications to help manage it. Since everyone’s body reacts differently to medications, what works for one person doesn’t necessarily work for another. I was on steroids for a while and, oh boy was I a bitch to be around. I gained 20lbs and was completely at the mercy of my emotions. Looking back, I feel terrible for my friends who had to deal with me during that time. At one point I was prescribed a drug that I discovered I was allergic to and ended up in the emergency room with a 104 degree temperature. It was definitely a trying experience.
The most significant challenge, however, was that I had an identity crisis… I’m not going to say it was an identity “change,” I think of it more as a “shift.” I was no longer the person that I had been. I couldn’t climb the ladder to get to the lightboard at the Charnuchin Theatre. I couldn’t help move set pieces up and down the stairs to the Red Room. I couldn’t get up from the floor easily, gracefully, swiftly – sometimes not even at all. I couldn’t jump or dance or climb. Sometimes I could fake it… sometimes not. I was depressed, in a bad mood and sleep deprived most of the time because in addition, the disease tends to deplete your energy. So while friends would go out for drinks after a show, I could barely get myself home. I couldn't be social in the way I used to or wanted to be. I resented that and it made me bitter.
As an actress, I had always been athletic and energetic. I loved stage combat and physically inhabiting a character, but now I have to approach characters differently, and of course I have to carefully consider the types of characters and productions that I go out for. And there is, what I consider to be, a moral dilemma when auditioning for someone who does not know I have these… limitations. When should I inform them of it? I don’t want these limitations to stand in the way of me being cast. If I tell them at the audition, it might count against me. However, it is also not fair not to tell them. So this is what I decided; I tell them when they call to offer me the part. If they think they can work around the limitations and with me to find different options, great, I get the part. However if they feel they really need someone who can do physical stuff, then they have not lost any rehearsal time and they can still offer the part to someone else. It has gone both ways. Some directors/producers are fine with it and even excited by the challenge. Others decided to go with someone else and some have even felt like I deceived them and shouldn’t have auditioned in the first place. (By the way, if I know in advance that a production has physical requirements that I am not capable of, I don’t audition.)
As a director and a producer, the long hours are usually the most challenging element for me. I use to be able to work my day job, then go to a four hour rehearsal then come home and work for another hour or two preparing for the next day, get up and do it all over again, seven days a week until we opened. Boy are those days over! Now, I can work my day job, have a two or three hour rehearsal and go straight home and go to bed. I’ll have to sneak prep time in where I can and I have to have at least 2 days off each week to recuperate.
Can I still make it work? Yes. I just have to be cleverer about it – and in that respect, what a glorious thing age and experience can be. I have also had to learn to recognize the signs that I am pushing myself too hard. Remember when you were in college and you drank too much and you woke up the next morning a little sick, but you were still able to make it to your 9:20AM class and by noon you were totally fine? And now when you drink too much you can’t get out of bed and have to call in sick for 3 days? It is sort of like that. I use to be able to push myself very very hard and recuperate very very quickly. Now days if I push myself too hard there are substantial repercussions that can take days or weeks to recover from and if I’m not careful I could do serious long term damage. So, I have to make sure I’m getting plenty of rest, eat when I should, build downtime into my schedule, take my medication regularly (carry some around with me in my purse, just in case) and not beat myself up for not being able to do what I use to do, or what other people can do.
This disease is sometimes unpredictable. I can be fine and then something will get set off and it could be weeks or months of being in pain and trying to get everything back under control. Sometimes medications stop working and you have to try something new. Sometimes the rigorous schedule of being in production is too much. My disease changes and has to be managed on a daily basis. I have to go to the hospital once a month and get an infusion which knocks me out for that whole day. I have had two surgeries, including a shoulder replacement. I will eventually need to have both of knees replaced and that will create all new challenges. It is a process.
I do have challenges (and half of the trouble is figuring out how to deal with the challenge) however, they are minor in comparison to other theatre friends that I know and that fact is never lost on me.
This disability is not my only challenge, but it is my most significant challenge. Ultimately, it has made me more patient and accepting. More importantly, it forced me to deal with my own human vulnerability and because of that I think it made me a better artist. There were (and will be again I’m sure) days filled with tears and frustration and self pity, but it has taught me so much about myself and what my limitations and my strengths are. It has helped me gain a perspective that I otherwise wouldn’t have – about the theatre, our community, myself. It has humbled me, but it has also made me so proud of my accomplishments and appreciative of the opportunities that have been offered to me.
What are the challenges you face as an artist and how have you dealt with them?