“My Voice” by Ginny Striewig

Ginny Striewig - 'Survivor'

I was diagnosed with an Oligodendroglioma, grade I or II in January of 2006 after surgery to remove 60% of it. The remaining 40% was inoperable so I took Temodar (an oral chemotherapy) from June 2006 to August 2007. Remaining tumor is all but gone. I have had MRI’s every three months and there has been no change since I stopped chemo in August of 2007. Starting January of 2009, I can now go six months between MRI’s.

I was laid off of my job in late April of 2006 due to my inability to keep up with my work and inability to work more than four hours per day. I discovered much later that my problems were due to a medication that I was taking that I was allergic to. I was deemed permanently disabled in March of 2007, and backdated to 12/27/05 (my first ER visit that put me into ICU). That same month I began volunteering in my City at a nature preserve in an attempt to increase my stamina and find out what work skills I still had that would be useful to an employer. I also worked in my boyfriend’s family business starting around May 2007, filling in for a family member who had moved out of the country. In March of 2009, I was finally ready to seek part-time work outside of the family business, and found an 8 hr/wk clerical type job through a friend. I had gone on interviews and tried to get other jobs, but I was considered over-qualified and couldn’t get hired. I can still do everything on my resume, just not all at the same time like I used to. January of 2009 I started assisting a woman in her home, who is disabled due to a traumatic brain injury. Because of my own brain injury inflicted during surgery, I am able to coach her on how to deal with the “new normal,” figuring out her own limits, prioritizing tasks and letting some things go to make time for the most important things , and we work together to get things done with less effort on both our parts. I suppose the two of us working together equal one non-disabled person.

I am still on permanent disability and likely will be for many more years. I can only make $760 per month and still keep my benefits. I have to carefully watch my work hours each month so that I stay under this limit. If I exceed $760 per month for nine months during a 5 year period (not necessarily consecutively), I will lose my monthly benefits and Medicare coverage. I am allowed to keep Medicare for 93 weeks as long as I pay the premium. What happens after that? I can’t afford to find out. Once uninsured, I will be uninsurable due to my medical condition.  SSD is not enough to make ends meet so I must work, but am limited by the system. It’s no wonder that people don’t bother to work once disabled. I had to complete a 12 page form for SSA once I started working. Hopefully I am having enough tax withheld from each check; otherwise it will not even be worth working. The SSD system was designed for people who cannot work at all, ever. It doesn’t take into consideration those who will never be able to go back to their regular work, but can manage a much lower position on a part-time basis. This system was initiated long before people started surviving cancer.

Now that we have so many survivors, it does not meet the needs of the people. Many people can go back to their regular work once they are finished with treatment, or they have a wealthy spouse or family. That’s great for them. I am single and missing a plum sized chunk of my brain. My executive function has been damaged, so I have trouble organizing things and I can’t multi-task (a most necessary skill these days). I know many survivors stuck in this same situation, only most of them make even less than I do in monthly SSD benefits. I was fortunate enough to start working when I was 14 years old, yet my benefits are below poverty level. Many other survivors out there are making even less! Of those, some will qualify for SSI and housing to make up for it, however, if they ever try to work, they will lose both. Though these survivors are happy to be alive and surviving, they deserve to thrive instead of living in poverty. Even the Workers Compensation system provides benefits to those who are unable to go back to their regular work after an injury. They receive most of the difference between their previous pay level and their new pay level. There is no such system for those with a chronic illness such as cancer or a severe injury not caused by employment. This issue is going largely unnoticed. Survivors are often ashamed to admit how they have to live in poverty. The outside world (those without cancer) think that we are all magically taken care of for the rest of our lives and/or we should just be happy because we are alive and don’t have the right to want anything more. We need to speak up and get the word out that the system is broken and failing us.

We need a system that works for those with chronic illnesses which includes survivors. These people should be entitled to keep Medicare benefits for the rest of their lives provided they pay the monthly premium. Anyone who could potentially become uninsurable should be able to keep Medicare until they die. They should also be able to work part-time and earn more than $760 per month so as not to live in poverty for the rest of their lives and be able to pay Medicare, supplemental, and prescription drug plan premiums. I don’t pretend to know the solution or how to implement it. I just know that people need to be aware that there is a problem.

In spite of the financial difficulties in my life, I continue to thrive in spirit, in time spent helping others with their journey and sharing my experience with them. I have been forced to give up many of the things I enjoyed before my diagnosis; vacations, flying up North every two to three months to visit friends, entertainment such as theme parks, concerts, shows, movies, wine tasting and purchasing, dinners out, and even medical care such as Acupuncture, Naturopathic Doctor, Chiropractor, and herbs and supplements, which help improve my condition and battle fatigue making it easier for me to work.

I am not just a survivor. I am and always have been a thriver, no matter what the world throws at me. I always will be.

Ginny Striewig
Brain Tumor Survivor

This entry was posted on Thursday, May 21st, 2009 at 2:17 pm and is filed under written word and tagged with , , .