Well, I just met with Fr. Doug. He was very nice, and younger than I imagined. Most of the priests I knew growing up, were easily old enough to be my grandfather, or great great grandfather. We talked for about an hour and a half. I explained pretty much everything I've been thinking, and going through; lots and lots of tears. I showed him some of my still life paintings, I had laying around the apartment and gave him my card, to check out my website.
He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it.
I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.
He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.
I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself.
Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.
Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place.
I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.
After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo.
Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do.
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My thoughts & day to day struggles, living with paralysis. Current information related to spinal cord injuries and paralysis. Visit my website for more information: christinasymanski.com.
Monday, May 9, 2011
Meeting With Fr. Doug
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That's all you CAN do, is your best.
ReplyDeleteI'm glad you talked with a priest and got some advice and information from someone a little more qualified to give it than any of your friends or family. He is an outsider and doesn't know you personally, he deals with life and death issues frequently, and he's probably more knowledgable of the Bible than any of us.
I've noticed a bit more hope in your posts lately, which is odd because they're still very dark, but the fact that you're reaching out to others shows that ending your life is not your first choice. I think Fr. Doug is right about you needing to forgive yourself and I also think what people on the Care Cure site are saying to you is right also -- your insecurities predate your accident and I think those are a major part of the problem here. I know that you see a counselor, but have you really focused on your bathroom and body issues?
I understand that nothing will change the situation here -- you don't want BP, you don't want assistance with basic tasks, you're in pain, etc. However, if you were able to see yourself in a more positive light AND forgive yourself for putting you in this awful situation, maybe that would make it slightly less horrific.
I'm not going to pretend to know I know what it's like to be in your shoes. All I know is what you tell me and what I see when I'm with you. I would just hate for you to make a decision to end your life when there was a possibility that you could make things better. It sounds like you're doing that by talking to your doctor about new meds. Medication won't magically make everything better, but the right combination make help you see things in a better light and offer you just a small sliver of hope.
Just out of curiosity, what did he say re: no antibiotics?
Christina, I am glad that you received the sacrament of the sick and were able to have a good talk with Father Doug. I am grateful to Donna for being able to arrange it. She is a good friend. I told Grandma and she was pleased. I continue to pray for healing for you. You are a very special person. Love, Aunt Mary Ellen
ReplyDeleteHi Christina,
ReplyDeleteI just wrote u quite a long message but unfortunately, it seems to have been erased when I went to preview it. I wanted to first say I'm sorry I haven't written u more often. More importantly, I just basically wanted to say that I'm a long time reader of your blog & admirer of your strength and honesty in the face of terrible circumstances. I also wanted to let you know I sent an electronic book to your email address, artist@christinasymanski.com. You once wrote me that u don't check it often. This book, for me, explains this life and its purpose and continuum better than any religious teachings (I too was raised Catholic) or other philosophies I've studied. I'm so sorry you're in so much pain (on many levels now) and I pray for you (to whatever god, or force in the universe that is out there) often. With love, Carrie
@Carrie- Thanks for the feedback. You're right, I don't check that account, as often as I probably should. I'll be sure to look through my messages. :)
ReplyDeletehi chrissy --
ReplyDeleteirrelevant to this specific post, but i was just reading an interview with stephen hawking, and i thought of you a bit when he discusses living with with disability: http://www.nytimes.com/2011/05/10/science/10hawking.html?_r=2&src=dayp
@Dan- Thanks. I'll definitely check it out. Stephen Hawking is n amazing person, on so many levels. I can't even wrap my mind around, how he's persevered for so long.
ReplyDeleteChrissy, I feel so badly for the pain you suffer, and though I am a stranger, I wish I could do something to help. It must be so hard to not understand the "why" of suffering. I am glad you were able to talk to someone, though, and hope it helped you. I hope the Lord will give you the grace and strength to continue on. It's hard! I appreciate the perspective your blog gives me...keep writing!
ReplyDeletesounds like you found a lttle shred of peace during that visit. i remember about a year after my injury, while on pilgrimage to medjugorie, that i visited with a young franciscan priest. we had a very good talk and an honest confession and i remember that peacefulness i felt after.
ReplyDeleteyes chrissy, i've seen some people who were high quads on vents who were going to college with me & some from rehab who are 25 years post. i can't imagine what it takes to survive that life.
you do have to mourn the loss of your former life. definitely do, but at some point darlin' you have to say goodbye to it. it's impossible to live this one when you're hung up on the last one. i used to tell people that you cant live in a paralyzed body with an able-bodied mind. i loved the boy i once was too, but he's long gone. i barely can remember him. i don't think much about what that life was like anymore. it makes this one that much more difficult. you can drive yourself crazy with thoughts of where you "should be" right now if you were AB.
i don't think you can live just for other people. if you're looking for a reason it has to come from within, it has to be for you, for what your journey could mean to you.
i pray that God gives you the strength you need to endure. i personally believe that we have spirit friends & angels that try to help guide us too. if that's true, yours are working overtime!
He said it's my right to refuse treatment, but didn't go into specifics. Like I said, he mostly blamed everything on depression.
ReplyDeleteIt's not only the embarrassment factor, and lack of dignity, that makes me hate BP. The process if physically uncomfortable, and leaves me feeling gross, most of the day. BP itself creates cold sweating, chills and fatigue. I absolutely dread it, every day.
*is (not if)
ReplyDelete