The day after

I’m not going to lie… I cried a lot yesterday. As I stalked my best friend on my iPhone as she ran the race, watching her every meeting point, I cried. I jumped up and cheered as she crossed the finish line. I wish I was more stable. I wish I could be there for her. I wish, I wish, I wish. But as that old saying goes “wish in one hand, shit in the other, see which gets filled first”, wishing doesn’t change much.

Caroline understands, and she’s always been supportive. I just feel like an awful friend, not being there screaming at her & for her. Maybe next time I’ll bring a vuvuzela and tick off everyone.

So, the reality is, how many of you have friends that will run (literally) one mile for you?  I’ve got a best friend that will fly across oceans and run 26 miles for me.  Pretty much, I’ve got the best-est best friend ever.

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Government and Epilepsy

There was a time I was a through & through Libertarian (with that capital L). I felt that less government is more government, and our nations was founded on the idea that we should not have our Federal Government in our day to day lives. In a lot of ways, I’m still right there. I want to believe that we would do well without unemployment, Medicaid, Food Stamps… That charity could fill the place of our government.

I don’t know that I truly believe this anymore. My last job (a government job), I had an uphill battle trying to make people understand that I wasn’t mentally insane, and that I DID really need help. Between the ADA, EEOC and threat of lawyers I finally got them to give me some much needed help. Then, less than 6mos over it started all over without cause. They didn’t say it was a review, they told me should I not agree with no help from them they would make me a receptionist.

I’m a college educated woman, with lots of experience as a social servant. I want to help people. I want to make their lives better. Unfortunately, without the government stepping in with acts, and laws I wouldn’t be able to do that through any job. With the job market the way it is, should I not be protected under the ADA & EEOC, I would not be hired, or fired as a person who “couldn’t do their job as described”. Think about it, if you owned a business and you had two choices, both equal in every every way except for one cannot a) drive b) function if med changes happen c) be mentally/physically present constantly due to seizures. Which one would YOU keep/hire? It sure as heck wouldn’t be seizure girl.

So without the ADA & EEOC I wouldn’t be able to work. With less government I wouldn’t have SSA Disability to turn to, and then where would I be? I’d be living with my parents with no way to help support myself. I would be a burden. My condition is heart breaking enough, why would I want to burden them further?

Not to mention without the hope of the NIH case study, surgery would be off the table. Their research is one of the main driving forces of Epilepsy research. Can we really say, given the statistics of giving vs people with the disorder we’d be SOL in a bad way. The NIH is a life saver when it comes to those of us with Epilepsy.

Some say I can turn to charity. The fact is charitable giving is hardest hit when the economy is down. It’s like pulling teeth to get people to donate even the smallest of things. I’m lucky to have some friends & readers that would do anything to help me raise money, but without them I’d be nothing. Again, it goes back to being a burden. I *CAN* work. I do work, everyday, but instead I would likely be sent to the back of the line, begging for work, and meds. What a bad combination.

Government and politics will always play a huge role in my life. I love to see how our world can twist and turn based on the momentum of humans. We really can change the world should we just try. So as election day comes up (in Epilepsy Awareness month no less), really consider what government does, and what you want it to do. I’m learning over time what I want my government to do for me, but what about you?

Conversations with Jeff Vanke

Another email conversation I had over the questionnaire was with Jeff Vanke (another VA politician). His conversation with me is as follows:

Dear Meghan,

Thank you for writing. I can’t tell you how refreshing it is to receive one of these candidate surveys from someone who actually lives in our District.

In answer to all three questions at the following URL, my answer is Yes. I support ADA. I also want to endorse what several ADA advocates said at a 20th-anniversary luncheon in Harrisonburg a couple of weeks ago, which is that ADA accommodation requirements should be reasonable.
http://sparklightadvocacy.files.wordpress.com/2010/10/efquestionnaire.pdf

Sincerely,
Jeff V.

Dear Jeff,

Wow! I have to say this is the fastest I’ve *EVER* received a response from someone in regards to one of the advocacy letters I’ve (e)mailed out. In general a response comes in 2-3 months. Thank you for taking the time to respond so quickly.

I know, from personal experience, that the ADA and EEOC is not strictly followed within our commonwealth. They seem to think that seizures aren’t as big of an issue as some other disabilities that are more prevalent within the US. Since moving to Virginia I have devoted my life and work to helping our citizens, and some agencies have forgotten that helping people doesn’t necessarily stop with the client at hand.

On a more direct note, how far would you fight for increased funding to the NIH, CDC and HRSA? I know, for example, part of my treatment depends entirely on the NIH’s funding and what they have available.

Sorry for writing such direct questions at this time of night. I was honestly surprised to get an answer this late, and wanted to make sure I responded before work tomorrow.

Thank you again,

Meghan

Dear Meghan,

I can’t promise anything right now on NIH, CDC, HRSA, until I know much more detail about existing programs and the other things that might be funded, within those agencies and beyond them, including beyond health care. So I’m afraid I have to disappoint by saying that while I think ongoing expansion of their funding is desirable, I can’t say how hard I would fight for wha,t until I am better informed than I currently am.

Jeff

Dear Jeff,

That’s fine. I’d rather someone say I don’t know than talk circles. I’ve learned a lot more than I ever wished to know due to my condition as it worsened. The NIH is a wonderful agency within the federal government which provides research money, that especially in disorders like Epilepsy is greatly needed. Those dollars go to direct research within the agency, case studies to provide things like PET scans and MRI scans, grants to research facilities like Johns Hopkins and UVa. It is an amazing organization that I would hate to see lose funding due to petty politics.

If there are every any questions I can answer for you, please feel free to ask. We’re downtown, so I’d be happy to answer any questions I can.

I hope you have a wonderful evening, and thank you again for responding so quickly.

-Meghan

Conversations with Stuart Bain

Last night, by the request of the Epilepsy Foundation, I sent a questionnaire to our locals up for election. Only 2 have responded thus far, and to be honest their answers have been interesting. I thought I would share them with you. The questions are as follows:

1)Will you support increased funding for federal research and programs at NIH, CDC, and HRSA

2)Will you support the enforcement of the Americans with Disabilities Act in schools and the workplace?

3)Should patients be notified when their prescription medication is switched to a different brand at the pharmacy counter?

The conversation between Stuart Bain and myself is as follows:

Meghan,

Thank you for sending me the questionnaire. Here are my answers:

1. No. The private sector produces much better results and faster solutions and cures with much less funding than their government counterparts.

2. For schools and government workplaces, yes. For privately owned businesses, that is up to the business owner and not the government.

3. Yes. It is essential for accountability and fraud prevention.

Best regards,

— Stuart Bain

Stuart Bain,

Thank you for your quick response. I’m really glad that we live in a country where we can respectively agree to disagree.

1) Private business has managed to make it where I am not able to take medications that are actually effective for my disorder due to the fact that there is not enough money in Epilepsy research (for example Frisium a drug that is approved in nearly every other country in the world is not approved here because there is no money for epilepsy research despite the number of people with the disorder). The only way I am able to get treatment (despite my good insurance – I’m a state employee) is through the assistance of the NIH.

2) Without the ADA I would have been fired from numerous jobs due to the fact that I have seizures. This would have put me into the SSA/SSI cycle so quickly and that would in fact eat up more government resources. Or, because of the fact that Title 2 & Title 16 claims are based off of how a job is performed in the national economy I would literally be living on the streets.

I appreciate and value your opinion. Should you like anymore information about how disability is determined, or how the NIH for example helps research and treatment of people who need it I would be glad to give you as much information as I can.

Thank you, so much, for your prompt response. It means the world to me.

-Meghan

Meghan,

Yes, I appreciate that we can agree to disagree; however, I don’t think we disagree like you think we do. Look at it this way:

As for question 1, keep in mind that it is the government regulators, not the private business, keeping Frisium off the market. If it weren’t for the fact that the government was forcing epilepsy patients to do without in this country, you would be able to procure Frisium and might not even need the assistance of the NIH. This is exactly the sort of conundrum I was referring to.

As for question 2: As a small business person who has helped hire and worked with individuals who have severe medical problems (borderline disabled), I assure you there are business owners who recognize the value of employing hard workers regardless of whether or not their disabilities occasionally interfere with production. I would like to think that if your boss at a previous job wanted to fire you simply because of a medical condition over which you have no control (provided it didn’t endanger the safety of others), it would have been their loss, not yours. It may have even been a good case for a wrongful termination civil suit provided you informed the employer of the condition prior.

In addition, I have two children with disabilities. Regardless, my wife and I are raising them to believe that they are capable of accomplishing whatever they set their minds to in spite of their disorders.

I am blessed with the technology to be able to reply to individuals promptly, and I thank you for taking the time to reach out to me.

Best regards,

Stuart Bain

I don’t actually procure Frisium through the NIH, I get it from Canada. My insurance doesn’t cover it, and I spend $100/month on it. It’s definitely not cheap. Otherwise, yes it’s government regulators keeping it off the market. That, and no money for the research necessary (As I said on Twitter). It’s a cycle. In most countries Frisium is a 3rd defense drug. I’ve literally tried every drug on the market, and none work. My doctor is working with me to get drugs from Canada to hold off seizures until they can get me in for surgery. The reason I’m working with the NIH isn’t for any other reason than because my insurance won’t pay for tests necessary to get to the point of surgery. I have 2-3 seizures per day I’m on 3 medications regularly. Surgery is my only option, at this point. My insurance company believes that the PET scan & type of MRI necessary aren’t covered unless it’s “proven” I need them. The only way it’ll be “proven” is if I have the surgery. The NIH is going to take me as a case study to help pay for everything so I don’t have to try to come up with over $8000 of testing out of pocket.

And yes, there ARE businesses that recognize the good people with disabilities can do. But there are more that do not. You can’t tell me if you had employee 1) with no major medical issues, no frequent trips to Johns Hopkins (which take 3 days because I have to use public transportation) 2) can drive 3) doesn’t have seizures in public, but everything else were the same that you wouldn’t hire them over the disabled person. It doesn’t make good business sense.

I’m all for less government. When in Kentucky, Idaho, and Texas I worked with the Libertarian party. It’s just the more I live, and the worse I get I realized that without some government agencies I’d be living on the streets.

Thank you, for your hard work and interest into my situation.
-Meghan

As I need to get to work, I’ll post my blog tonight regarding my conversation with Jeff Vanke.

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