It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Begining to grieve
Although it's been two decades since my brain tumor treatment, I don't think that I've ever grieved. I was so busy trying to move past my many side effects and my trigeminal neuralgia, chronic facial pain, that I never really understood the entire impact that my brain tumor has had on my life. I probably won't understand it in its entirety until I'm 90.
I understand how my education and career was impacted and I'm really not sure if that's something that I will ever accept. It's amazing that I was able to focus on anything since I was so medicated and ill from my trigeminal neuralgia. I am much more optimistic about a fulfilling career then I used to be but, I don't know if I will ever work full time or if I'll be able to support myself. I know that there are many people who did not have a brain tumor and are incapable of holding a job but, that does not really help me. I still feel like I should be able to support myself and be able to have a nice life, much like the one I was given. And it's so hard to know what kind of job would really satisfy me. And then I think that it's scary to try to reach it and I may possibly not be able to manage the hours for my new dream. I feel like part of being an adult is knowing your responsibility and I know that right now I need to keep my disability income. I guess I hoped that someday I'd see a future without my SSD hanging over my head. It took 2 yrs. to get approved. I had 2 yrs. of not attempting to work for fear that I'd be seen as too capable. I spent those yrs. being so... angry that I FINALLY was feeling well and I had to stall my life again. It's like, when can I really move forward? When can I dream (a realistic dream) and not fear that my disability income won't be compromised? I'm afraid that my mom would lose all of her retirement money if I lost either my SSD or my job. I could never live with that, especially after all that she's done for me. She has been my one constant in my life and I'd be dead if not for her love and support.
I have also always been too sick to think about having children. I never thought about having them and I never thought about not having them. I did not have an opinion either way. Plus, I don't have a partner. So planning for a child has never been a big part of my life. And I really do think that it would be way too much for me to deal with. I'm a clean freak, set in my ways, etc. Maybe I would be a great mom. Who knows? I do love kids. I guess I'm just not sure how much energy I really would want to put into raising a child. Most of my friends do not want children but, others have already started their families. But, still, many of my local friends do not have children. This year my step -sister found out that she's pregnant and I am thrilled for her. My other sister is now engaged and will be trying to start a family soon after she's married. Rachel is 10 years younger than me. I think she's 27 and that's a very good age to start planning a family. When I was younger and in college I had planned on getting married at 26 years old. I think seeing the possibility of what I expected for me happen to my sister feels like a big reality check for me. I'm very happy for my sister and even though in my head I'm imagining happiness and good things for both of them, you never know what the future holds. I know that it will not be as perfect as I imagine for either of them, just because that's how life is. But just knowing that they're passing me by is very sad for me. I think even if I could have a career and a husband, there is no way that I would bear having children. I still have a piece of tumor in my brain and I know that I risk the tumor growing between the blood flow and the hormones of pregnancy. I don't feel that I could even chance a pregnancy. I feel like I'm finally moving on from my treatment and can not imagine doing anything to set me back. It's just very upsetting to know that I can't even have that option. Perhaps I'm upset because my options in life seem so limited.
I hope to someday feel genuinely happy and to feel like I found my destiny, something that I was really meant to do.
I understand how my education and career was impacted and I'm really not sure if that's something that I will ever accept. It's amazing that I was able to focus on anything since I was so medicated and ill from my trigeminal neuralgia. I am much more optimistic about a fulfilling career then I used to be but, I don't know if I will ever work full time or if I'll be able to support myself. I know that there are many people who did not have a brain tumor and are incapable of holding a job but, that does not really help me. I still feel like I should be able to support myself and be able to have a nice life, much like the one I was given. And it's so hard to know what kind of job would really satisfy me. And then I think that it's scary to try to reach it and I may possibly not be able to manage the hours for my new dream. I feel like part of being an adult is knowing your responsibility and I know that right now I need to keep my disability income. I guess I hoped that someday I'd see a future without my SSD hanging over my head. It took 2 yrs. to get approved. I had 2 yrs. of not attempting to work for fear that I'd be seen as too capable. I spent those yrs. being so... angry that I FINALLY was feeling well and I had to stall my life again. It's like, when can I really move forward? When can I dream (a realistic dream) and not fear that my disability income won't be compromised? I'm afraid that my mom would lose all of her retirement money if I lost either my SSD or my job. I could never live with that, especially after all that she's done for me. She has been my one constant in my life and I'd be dead if not for her love and support.
I have also always been too sick to think about having children. I never thought about having them and I never thought about not having them. I did not have an opinion either way. Plus, I don't have a partner. So planning for a child has never been a big part of my life. And I really do think that it would be way too much for me to deal with. I'm a clean freak, set in my ways, etc. Maybe I would be a great mom. Who knows? I do love kids. I guess I'm just not sure how much energy I really would want to put into raising a child. Most of my friends do not want children but, others have already started their families. But, still, many of my local friends do not have children. This year my step -sister found out that she's pregnant and I am thrilled for her. My other sister is now engaged and will be trying to start a family soon after she's married. Rachel is 10 years younger than me. I think she's 27 and that's a very good age to start planning a family. When I was younger and in college I had planned on getting married at 26 years old. I think seeing the possibility of what I expected for me happen to my sister feels like a big reality check for me. I'm very happy for my sister and even though in my head I'm imagining happiness and good things for both of them, you never know what the future holds. I know that it will not be as perfect as I imagine for either of them, just because that's how life is. But just knowing that they're passing me by is very sad for me. I think even if I could have a career and a husband, there is no way that I would bear having children. I still have a piece of tumor in my brain and I know that I risk the tumor growing between the blood flow and the hormones of pregnancy. I don't feel that I could even chance a pregnancy. I feel like I'm finally moving on from my treatment and can not imagine doing anything to set me back. It's just very upsetting to know that I can't even have that option. Perhaps I'm upset because my options in life seem so limited.
I hope to someday feel genuinely happy and to feel like I found my destiny, something that I was really meant to do.
Comment
-
Comment by Rose Hominick on April 7, 2010 at 8:53pm -
I have you beat by over a decade! It has been 31 years since my first brain surgery,( I was 21) with recurrences 5 years later (age 26)and then a whopping 14 years after that. (days before I turned 40!) Brain tumors are not fun. I have not been able to have children, and although I have a pretty significant amount of education,( an honors B.A. in English literature and two Masters degrees in Theology)I have been too unwell to hold down a full-time job, as I am chronically exhausted, often ill, and suffer from depression. For me the grief comes and goes, as each new chapter in my life and in thie lives of my siblings and friends, highlights the many dreams and aspirations I have had to abandon. When I married at 36, I hoped against hope that I would be able to get pregnant, but infertility reared it's ugly head and by 40 I had another brain tumor to deal with. I jokingly said to the neurosurgeon that should I get ANOTHER tumor, I was going to keep it, name and start saving for its college education! My sad attempt at humour was a not-so-brave- front for the very real anger and disappointment. I don't know what to tell you other than that brain tumors are not easy to deal with, and that grieving is so neccessary and I don't know when it will stop for me. Although some days, I am better than others. I have not had any kind of support group to help me through this process, and I am so glad to have found your sight today. I hope that the knowledge that there are others going through similar experiences, gives you some comfort and helps you to realize that you are not alone. Finding you has certainly helped me!
-
Comment by Ralph Hill on March 12, 2010 at 8:16am -
hi,
After the dx and first set of debulking OPs back in 2001 (?) I pretty much stopped being a productive member of society and should not have been (trying to) work(ing) full time as a freelancing consultant but was unable to see the bigger picture I guess. Had I perhaps seen that I could have made a better life with my wife and 2 boys.
I'm stubborn/stupid enough to not accept that I'll never really work again. I like to think that I used to be pretty good at what I was doing. I'm now living at a rate we can afford - my dad carved off a small chunk of his farm for us and we built a very small but very cozy home. It took a brain tumor and a generous dad to get us what I wasn't able to provide (security of a roof over our head). yeah i should be a lot happier but it was my role to get the family to this point of security.
Enough already: I'm starting some counseling again at the county health unit. I need to come up with some working coping skills other then plugging up this website with my babble.
-
Comment by Tonya Penn-Snyder on March 5, 2010 at 1:52pm -
Hello, Beth.
Grief is a process I have been dealing with continuously since 2002...the loss of a brother, niece, 2 aunts, identical twin sons and a grandmother...oh, and a divorce. Then a remarriage and 2 children (worth every second of the stress, so I keep tellnig myself). Not to mention the B.A. in Human Services and M.A. (in the process of completing; got put on hold when Trev got sick), climbing the corporate ladder, paying on student loans that I'm not even utilizing my education to perform my job tasks at this time.
So why all the rambling? My life is far from what I ever anticipated (in some ways better, but in some many more...NOT so) . Sure I dream of a "better" life some days, but then I realize God has me right where I am for some reason. Some day I hope to look back and see that all of these broken dreams, deaths and unforeseen pain were not in vain afterall.
Go through the grieving process...just be sure to keep working through it and not get stuck in the trap of depression that grief often sets for us.
XOXO
-
Comment by Wendy Felsenthal on March 2, 2010 at 3:23pm -
I'm glad you are writing your feelings down Beth.
You are grieving, and it IS a process. Writing and speaking about it will bring about change in you.
Let me tell you something about kids-I'm a neat freak as well. I can't stand dirt or things being out of order(my order)...I have the (sorry Nick) piggiest kid in the world. I survived. I don't know how really. Ok, well, yes I do...looking forward to him moving out:) When he was to be 18, I would be 40 and my whole life would start anew....Well, that didn't happen that way BUT....its still happening. It will for you too. You need to maybe think about re-drawing the picture you had for yourself. God has huge plans for you:)
© 2013 Created by Beth Rosenthal.
Powered by
You need to be a member of It's Just Benign to add comments!
Join It's Just Benign