It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
How do you grow old gracefully when an illness happens in chilhood?
I was just a frilly girl who loved gymnastics and dancing. I knew that my mom was successful in part, because of her education, I planned on getting an Ivy League education, like both of my parents. I practiced gymastics and studied. I was proud of my high grades. That was how it was, in my eleven year old mind.
Even today, as a 36 yr. old woman, I haven't been able to fully absorb how my life changed because of my brain tumor diagnosis.My parents found out and two weeks later the brain surgery was scheduled. Two weeks may sound like a long time to you but, treatments were much different in 1986. I think my parents met with two or three neurosurgeons and decided on Dr. Fred Epstein. I remember being told that I would need surgery and was scared about it but, I knew that I didn't have much of a choice.
I don't remember if anyone spoke to me about how I would be after the surgery was performed; I think they hoped for the best. I would have managed well, even with the side effects from my two operations. My side effects included bad balance, muscle weakness, unsteady left arm and hand, and a deaf left ear. Physical therapy was barely alive at that point and I did not learn a thing from the therapist who came to my home. I woke up not knowing how to use my body anymore and a therapist wanted me to walk in a straight line, like one foot in front of the other. It was a ridiculous request and it's shameful that she didn't realize it.
I don't feel that the brain surgery was so crippling rather, it was the radiation treatments. Several years after the treatment ended I woke up with an excruciating and crippling pain. The oncologists told me that I have trigeminal neuralgia. This pain feels like I'm being electrocuted on my left facial cheek. He said it so matter-of-factly, like it did not matter that I was in agony and that my life was being ruined. I know that he is still practicing and I wish I was a person that would be happy to defame his name but, I'm not. I've met a pain doctor who actually helped me about six years ago but, I lived with pain between the years of 16-28 years old. I graduated high school, pledged a sorority, graduated college, and traveled all while I was being zapped with my trigeminal neuralgia pain. Nothing is as magical when you're in constant pain.
My life has been going really well the last number of years. Finally, right? It only took 17 years. I've been steadily working, feeling well, and have started and developed this wonderful website.
It's unfortunate that having a brain tumor doesn't give me a free pass for any other illness. I'm 36 years old now and although still young, it becomes more likely that I could get diabetes, breast cancer, heart problems, etc. I had to follow up with doctors the last few times I've had my blood taken. Usually I see a specialist and it's nothing; I don't need to worry. It's just scary to think how my future could be. I have trouble keeping track of my life now, all of these good things are happening. I'm afraid that I would lose everything wonderful and happy, and then my sanity will leave if anything else happens. Do any of you feel like that would feel like that?
Even today, as a 36 yr. old woman, I haven't been able to fully absorb how my life changed because of my brain tumor diagnosis.My parents found out and two weeks later the brain surgery was scheduled. Two weeks may sound like a long time to you but, treatments were much different in 1986. I think my parents met with two or three neurosurgeons and decided on Dr. Fred Epstein. I remember being told that I would need surgery and was scared about it but, I knew that I didn't have much of a choice.
I don't remember if anyone spoke to me about how I would be after the surgery was performed; I think they hoped for the best. I would have managed well, even with the side effects from my two operations. My side effects included bad balance, muscle weakness, unsteady left arm and hand, and a deaf left ear. Physical therapy was barely alive at that point and I did not learn a thing from the therapist who came to my home. I woke up not knowing how to use my body anymore and a therapist wanted me to walk in a straight line, like one foot in front of the other. It was a ridiculous request and it's shameful that she didn't realize it.
I don't feel that the brain surgery was so crippling rather, it was the radiation treatments. Several years after the treatment ended I woke up with an excruciating and crippling pain. The oncologists told me that I have trigeminal neuralgia. This pain feels like I'm being electrocuted on my left facial cheek. He said it so matter-of-factly, like it did not matter that I was in agony and that my life was being ruined. I know that he is still practicing and I wish I was a person that would be happy to defame his name but, I'm not. I've met a pain doctor who actually helped me about six years ago but, I lived with pain between the years of 16-28 years old. I graduated high school, pledged a sorority, graduated college, and traveled all while I was being zapped with my trigeminal neuralgia pain. Nothing is as magical when you're in constant pain.
My life has been going really well the last number of years. Finally, right? It only took 17 years. I've been steadily working, feeling well, and have started and developed this wonderful website.
It's unfortunate that having a brain tumor doesn't give me a free pass for any other illness. I'm 36 years old now and although still young, it becomes more likely that I could get diabetes, breast cancer, heart problems, etc. I had to follow up with doctors the last few times I've had my blood taken. Usually I see a specialist and it's nothing; I don't need to worry. It's just scary to think how my future could be. I have trouble keeping track of my life now, all of these good things are happening. I'm afraid that I would lose everything wonderful and happy, and then my sanity will leave if anything else happens. Do any of you feel like that would feel like that?
Comment
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Comment by Heather Brumwell on February 25, 2010 at 11:21pm -
Hi. I definitely feel for you in this. I have missed out on experiencing some of the good, because I was afraid that something bad would happen. For 13 years after my diagnosis I still thought about it quite a bit - in terms of my future, my possibilities etc. Then, a friend of mine suggested that I draw what my life is like with the brain tumor, and then draw a picture of what my life is like without the brain tumor. This actually changed my perspective drastically! When I live from the feeling of my life without the brain tumor (which is the reality for me at this point) it is so much more freeing and wide open.... a new world, the same world, just a new perspective.
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Comment by Wendy Felsenthal on February 9, 2010 at 7:34am -
Yep.
I have realized though, that the whoe idea of growing old 'gracefully' is a myth or a dream, for most everybodythough, not just me, or someone who has this illness, or this disability, or that one.....or for even the person who seems to have it all together on the outside....
Getting older is hard, and even though we have all these advancements in medicine available to us, I feel, that to a very large degree, they only make longer the inevitable. Bodies fall apart, whetehr it be your brain, your hands, your heart, your back, your knees....we all fall apart.
The only place I recall seeing anyone being graceful about death and getting older was on TV and in the movies.
Now, I do think you can make the best of what you have while you have it, so don't think I'm trying to be all doom and gloom:)
I HATE seeing docs now, because theya ll seem so glib. Because of our situations, we DO have to see specialists. I think especially BECAUSE of our diagnosis and treatments for brain tumors, whatever kind they may be, we are especially mindful of what could be going on in you body even though nothing is 'showing' on the outside, so we tend to want to nip it in the bud sooner than later...
I'm proud of you Beth! There is no ofical timeline for our inner and outer success! It comes and goes, physically and mentally and emotionally throughout your entire life. Please don't measure yourself by those around you so much. God made a path for everyone to follow.....individually. My path is not your path, and vice-versa. You ARE right where you are supposed to be:)
Wendy
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