Planned article in the works

I am currently working on a research article. As a disabled person, I sometimes feel as if politicians don't think I count for much and the issues that affect disabled people are not anywhere near a priority. With that in mind, I've decided to check the websites of the major politicians, Republican and Democrat, running for president and any articles about their platforms to see where they stand on disability issues. I will be checking the major players, Obama, Gingrich, Santorum and Romney. I'm skipping Ron Paul since I don't see him having a major role. Keep a lookout for my groundbreaking exposé. Maybe it will bring that radio guy… I forgot his name… How refreshing. Well anyway maybe it will bring him out of hiding.

My mental reset button

Sometimes when dealing with people who don't know me well, I can sense questions that they are too polite to ask. The questions remain in the background; but I don't like the unacknowledged elephant in the room. One of the questions that no one ever asks but many people want to is: What physical thing do you miss the most since MS tried to take over? Would it be driving, running, walking, using your hands, etc.?

 It's definitely walking. I used distance walking as a way to deal with my teenage angst. I hated my first two summer jobs… I worked at Gino's Fried Chicken and later at my uncle’s seafood restaurant. Gino's was bad enough, and I was happy when I started at my uncle’s as bus help for  a change, but then I was promoted to waitress because I did so well. What they didn't understand was that I did so well because I didn't have to think about it. I could zone out but I couldn't do that as a waitress and I hated it. So when I started at Gino's, although I rode my bike 3 miles to work, between shifts I walked for miles along the beach. I continued this activity while I worked at my uncle's. I would walk 3 miles before my shift, run around in the restaurant for five hours and then walk another three or 4 miles when I got home. I walked fast enough to get the endorphins going and also was able to work on my mental health. I think walking kept me from going crazy with those jobs. I can still feel the cold wet sand under my feet and the numbingly cold water splashing up my calves when I think back.

 Then after I graduated from college and got a real job, I was disappointed to find that real work at the beginning levels wasn't much better than those summer jobs I left behind. Then I rescued my friend Kelly from an unhappy situation in Rhode Island. She soon moved on but left me with her dog, Mattie, and I had a reason that made me have to walk. Mattie and I walked for miles all over Delaware and once again I was able to get my brain passed my mundane customer service type jobs. I out – walked two dogs and I kept walking distances as long as I physically could even though I no longer had unsatisfying employment. It became a way for me to deal with the gradual encroachment of the MS into my life.

I actually kept going longer than I should have, in the end I was using a walker and dragging my lower body along. I was going on sheer upper body strength and stubbornness. It definitely was not mentally cleansing and I'm still looking for something to replace walking and where it took my mind. Writing seems to help. It doesn’t trigger the reset button in my brain like walking did, but it does provide a needed outlet when my frustrations reach the boiling point. I’m a work in progress…

You asked Mr. President

Today I got an e-mail from Pres. Obama asking me for my healthcare experiences after the Affordable Care Act was passed. Not being one to miss an opportunity, this is what I wrote:

I have had multiple sclerosis, a chronic progressive disease, for over 17 years and I've worked almost the entire time. However, two years ago the disease flared up to the point that I could no longer work and was confined to a hospital bed in the living room of my home. Of course I took advantage of COBRA and it took care of me for quite some time.

A few months ago, I was horrified to figure out that the existing COBRA ran out in February but the Medicare did not begin until September. I was at wits end. I knew that if I was uninsured for six months, I would have over $10,000 of prescription medications alone, not counting any doctors appointments or medical emergencies.

But then a series of remarkable, beneficial coincidences occurred. In January 2012, the State of Delaware legalized civil unions. Janet, my partner of over 20 years, found out that her employer’s insurance allowed her to add a partner after a civil union. Thanks to Pres. Obama's Affordable Care Act, there was no pre-existing condition clause and I am once again fully insured.

Mr. President, although I have benefited from this Act, I don't feel that your work is done. What if I didn't live in a state that allowed civil unions? What if I didn't have a partner who could add me to her insurance? What if her insurance did not allow partners to be added? I feel as if there is to much unsurity.

I was very lucky, but there are still too many gray areas where a disabled or sick person could fall through the cracks. I've checked with many healthcare professionals and have been told that this is just the way it is. Please continue your work on the healthcare issues. It's a good start, but it's not done.

Don't forget you've got a voice too.  If you get the opportunity to  rant or raise the roof, don't be shy. I used to be, it's really boring .

Voting, a heads up

I was watching Rachel Maddow a week or so ago and one of her topics particularly concerned me… Well they all concerned me but this one seemed relevant to this blog. She was discussing how a lot of states have enacted laws expanding the amount of identification required in order to vote. But I mentally shelved the issue because I didn't think it was a factor in the states in my area. But I was wrong. I was watching the news last night and was horrified to see that the very type of law that Rachel was warning about was about to be passed in Pennsylvania… That's a little close to home for me.

Apparently, a lot of Republican controlled states are changing the identification requirements for voting. Picture IDs will now be required contrary to previous years and the change is not being well-publicized. Other forms of ID that have been accepted previously will not be sufficient and potential voters will be turned away. It's anticipated that the majority of people that will be affected are the elderly and low income communities, because many people in these communities do not drive or have other reasons for these forms of ID, they don't have them. Why am I concerned? Well a lot of disabled people are on a fixed income and could possibly have a similar identification problem.

 And surprise, a lot of the people who will be affected by this legislation are Democrats. This new legislation is seen as the latest way that Republicans are blockingg Democrats from the polls. The political pundits are saying that if voting is made to difficult, people just won't come out or will be turned away at the polls for insufficient ID.

I'm just doing my part to spread the word. Pass on this information please.

Childhood fantasies… Fear the bird!

As a kid, I had fantasies… I was a superhero, I was a star athlete, I was on TV etc. The closest I could get in my reality was trying to be a jock. As a little one, basketball was the easiest. My dad had put up a basketball hoop at both our homes, one in the driveway in Cherry Hill and one in the back alley at our summer apartment in Ocean City, N J. In Cherry Hill, I would take shots with my brothers or on my own but in Ocean City, I had several friends who were boys, not boyfriends, that I would play games against. I got to be pretty good in a 4 foot tall, 11-year-old kind of way and I really enjoyed taking it to my slightly taller friends who were boys. They thought they should be better than the little girl.

 With adulthood came reality. I stopped playing long ago, long before I no longer could. But the game never lost its magic for me. My father and I went to see Big 5 Basketball at the Palestra in Philly for several years. This year for Christmas, Janet bought me season tickets to the University of Delaware women's basketball games. I love it!

 There is one standout player on the team… Mind you, the players are all good but she is excellent. Her name is Elena Delle Donne.

 She was the top high school player in the country and I heard that she was going to go to the University of Connecticut, one of the top women's teams, as one might expect her to. Then the rumor mill started… She disappeared, she quit University of Connecticut, she quit basketball entirely. It seems as if all the rumors were true, she appeared at the University of Delaware and started playing volleyball for a year. Then she got her head together and started playing basketball and the team has had the best season ever. I'd heard rumors that there was more to it but I never followed up on finding out.

 Then I watched a little ESPN exposé about her and it changed my opinion of her totally. She isn't just a great basketball player, I think she's a great person. I've attached a link to the ESPN story:

http://www.youtube.com/watch?v=SkWHrjdn5PY

 The reason she left the University of Connecticut wasn't that she went from being a top high school star to being one of many great players… She missed her older sister who has cerebral palsy and is autistic, blind and deaf. Her sister can't see her play, actually she doesn't even know she plays. But to see the two of them together, how they interact with each other is absolutely magical. And it's not just her sister, the segment showed Elena with several other people with CP and her connection with them all was amazing. She didn't hold back anything because of the cameras and she seemed to bring out that sense of caring in her teammates as well.

 I'm sure there'll be people who will say that you can't tell anything about a person based on a short news clip. I don't think those people are right, and it's surprising because I'm usually the cynical one. I don't think basketball will be enough for her to be fulfilled.

Maybe I'm gullible, but I do see the potential for her to serve as an advocate for the differently – abled in the future. Watch for her, and see what you think.

But right now, I have to change the subject…we need her to concentrate on basketball. The conference championships are this weekend and if they win, it's on to the NCAA championships. Wow, who would've thought that little Delaware could make it to the Big Dance!

Dream job part two

After several years of transferring from the scooter to various office chairs and the toilet, things were becoming hazardous for me. I fell several times while transferring and had to request handicapped accommodations such as bars in the bathroom. When I fell transferring to the office chair, my coworker helped me get up but someone reported this incident. It was announced that employees could not help me and if I could not get up myself, 911 would have to be called. Apparently, it was at an insurance issue. 911 was called twice, the first time they were nice, the second time they were not happy with the situation even though there were several months between the two calls. I had to switch to an electric wheelchair. I was told by a higher-level person that although I no longer could hide my handicap, I should not trust the administration to act in my best interest. They said there was still someone in the college administration that did not like someone with an obvious handicap working in such a public capacity. They said to be careful.

Unfortunately, the slow progression of my MS was changing. Things were taking a major turn for the worse. My legs were no longer just weak, they were useless except as a conduit for incredible pain the likes of which I had never experienced. I went to the neurologist and she put me on narcotics, I think it was oxycodone. I worked for two weeks while on this stuff but the pain just got worse, although a coworker said it did not affect my performance… She said she never knew I was on drugs. I don't know if that was a compliment or not. But it got to the point where I couldn't take it anymore and I had to go out on Disability more precisely the Family Leave Act.

 My direct supervisor told me that the college would hold my job for me but I had no official word in writing from the administration. At the same time she was telling me this, she also advised my coworkers, one of whom was a close personal friend for over 15 years, not to call me. She later told me that this was not her idea and implied that this ruling came from over her head.

 Meanwhile, several doctors were trying to figure out what was wrong and how to fix it. I went to appointment after appointment with specialist after specialist and week after week was passing. I finally found a doctor with a clue as to what to do for me. (Watch for another blog entry about my adventures trying to get a diagnosis or any help at all.) He wanted to do surgery to implant a pump to circulate a higher concentration of anti-spasmodic medication than I can get orally. The surgery was scheduled, then rescheduled then rescheduled again. In spite of what my direct supervisor said, the time allowed for the Family Leave Act ran out and I got a letter sent certified from the college. On the day the Act ran out, my job was terminated and I finally found out who in the it college administration had something against disabled people. The name was on the letter but out of respect for my friends still working at the college, I won't reveal who it was, although it is tempting.

 It's all very legal, but the college’s actions feel very disturbing and disrespecting of 10 years of loyal service. I totally understand that they needed to fill the director position and couldn't hold it open any longer but they could've called and made it more personal. I also know that they never got a new director after two years so they could have waited for me. Honestly, I physically couldn't do it anymore, but to handle the situation this way is inappropriate, inhumane and it sucks. I hope they are not teaching these human resource methods to their students. I don't want to give the impression that I didn't enjoy working there, and the people, both students and staff, that I had the pleasure to work with. It's just the ending that soured it. Thank you for reading, it's been very therapeutic to write it!

My dream job, part one

I left my last job simply because my leg was starting to bother me when I schlepped up three flights of stairs to get to the stacks. I interviewed at the new college library that will remain nameless in 2000, before I was outwardly showing symptoms of MS. I knew it was there waiting but no one else could see it. I was snatched up for the job of Periodicals Librarian.

I went on vacation before starting and when I returned, I was advised that the current Library Director had given her two week notice. For some unknown reason, she chose to tell one of the remaining staff people how much money I was being paid. Because my starting wage was higher than what she was being paid after eight years, she quit in protest. The end result was I was starting a job, did not know any of the responsibilities and had one part-time clerical worker to show me the ropes. Right off the bat, I was working 10 hour days to help with the staffing problems. To try and resolve some of these problems, the administration brought back a previous employee. Then they had the brilliant idea that the two of us would compete to be the new library director.

Unfortunately, the returning employee had psychological problems and the competition to be the director set her off. She started disappearing for 30 day periods, spending time in the local psychiatric hospital. I was stuck working 10 hour days again to cover. This went on for over six months until she stole money from our little petty cash fund and chose to quit. I guess it is obvious who won the competition to be director.

I was asymptomatic for the first three years but then started to have pains in my right leg and had to use a cane. I had to reveal why this was happening. This information was then passed on to the personnel officer. There were no negative initial repercussions. After a few years, the disease progressed and I added to move on to a walker. At this point, I was warned to try not to show any additional outward signs of disability. I was told that someone in the administration was not in favor of a visibly disabled person working in a public service position. I wasn't quite sure how to take this advice and how not to be visibly disabled but I wanted to keep this job because I knew at this point I could not easily get another. Who would hire anyone who had an obvious chronic progressive disease? Meanwhile, as my disease became more obvious, I noticed all the job descriptions for the other local libraries suddenly had physical requirements in the job descriptions… Now a library director was required to climb ladders and lift 25 pounds. Clearly, surrounding libraries did not want a disabled library director either. I had to hold onto this job as long as I could.

Keeping the caution in mind, although my disease progressed, I continued to use the walker and did not move on to more appropriate assistive devices probably longer than was safe. I finally switched to a scooter without any fanfare and tried to stay under the radar. At the same time, I will say very modestly that I was an excellent director and performed beyond expectations according to my personnel reviews. I received several awards, expanded student usage of the library, served on several vital college committees and initiated many programs while keeping the library running under budget. There were no complaints about me.

Insurance Rant

I'm in a unique and very potentially scary situation. I went out on disability from my job in March of 2010. With the help of my parents, I was able to afford the ridiculous expense of the COBRA insurance. It started out at over $600 a month, and for the last six months it has been over $800. I would not have been able to afford it without their help.

I was horrified to find out a few months ago, that my COBRA terminated at the end of February of 2012, but Medicare did not start until September of 2012. That would be six months of no insurance for someone who has a chronic debilitating disease who takes medication alone that is over $2000 a month. That's not counting the quarterly doctor’s appointments. Plus all of the items I purchase out-of-pocket for my own care, and the aide and the physical therapist that my mother pays for. I was overwhelmed with the thought of what was upcoming.

But then a series of remarkable, beneficial coincidences occurred. In January 2012, the State of Delaware legalized civil unions. Janet, my partner of over 20 years, found out that her employer’s insurance allowed her to add a partner after a civil union.

Well, I guess it's no surprise that we were civilly unionized on January 21, 2012 and I was added to Janet's insurance as of February, 2012. Now I am covered at least for this month by both types of insurance… It seems like feast or famine.

But what happens if you don't have a loving partner, if you don't live in a progressive state, or if your loving partner’s insurance won't take you up for coverage?  I've asked several people who should know like doctors, and health care professionals, but they say there's nothing available to help those people who fall through the cracks. There's something elementally wrong with this but I don't know what the average person can do about it. Someone does!

And then there's Rick Santorum; if he wins the presidency, he has promised to void all civil unions. Then consider Mitt Romney who says essentially that the majority of uninsured and unemployed are that way because they haven't tried hard enough. I worry about me and I worry about my country… But I digress.