Not a happy time

I normally am involved in the holiday season getting a tree, shopping for gifts and helping Janet decorate.  This year, I just can't get into the spirit.  Too many things have happened in my life and all around me: the death of Janet’s dad, her mom's illness, the elementary school shooting, Hurricane Sandy and the Fiscal Cliff.  I'm not only not festive, I'm depressed.

 The passing of Janet's dad certainly puts a damper on the holiday spirit.  In addition, Janet's mom has bone cancer which is contained for now but won't be cured.  She's putting on a positive face for her youngest grandchild, but I feel the pain in her heart and body.

The elementary school shooting in Connecticut is horrific…The loss of 20 young lives and their generations' loss of innocence. When I was growing up, I felt safe in my elementary school even when I thought the outside world was going crazy.  It was stable and secure inside James H. Johnson Elementary School -- who could imagine a crazed person killing my classmates?

 Hurricane Sandy devastated the Jersey Shore where I spent my summers from a very young age.  We had a house at Ocean City, I worked in Stone Harbor, and hung out with long ago friends in these and other Jersey border islands.

 I'm distressed about the Fiscal Cliff which is looming over everything.  The rich Republican white men want to protect their lower tax rates and the country be damned!  

 So in a nutshell, why should I be depressed? In the past month I've been surrounded by grave illness, death, loss of innocence and looming financial disaster. It's going to take me a long time to put a positive spin to this but I’m trying…

 

Memories of Josh

Janet's father, Josh Tye Williams Jr., passed over a little after midnight on December 1, 2012. Before he passed, his family had a wonderful opportunity to spend time with him when he was mentally with it. They were able to have some positive interaction with him. The memorial gathering and the military funeral were very low-key and simple and would've been to his liking. After all the events of the day, some of us went out to lunch and spent more time remembering him.

 

Unfortunately, I did not get to see Josh during his better moments. The last time I saw him was Thanksgiving, when I made him angry at me by trying to reason with him about staying in the nursing home until arrangements were made for him to come home. Let's just say our last moments together were not positive or endearing. It's not enough for me right now to know that the reason he was acting that way was because he wanted to die at home with his wife.

 

I feel a need to share some special memories of Josh, perhaps selfishly, so that I can change the picture of him that is stuck in my head… Of him snapping at me, although I have so many more positive thoughts about him.

 

I have many memories of Josh; Of him being annoyed with his computer and trying to help him with it, of him sitting in his big black recliner watching TV really loud, of him cooking, of him sneaking me little pieces of country ham before it was served and of having casual conversation with him and his dry, occasionally biting sense of humor. The most important ones to me though were of him at our handfasting. He was one of three males in attendance and the other two were under the age of seven. My father was not feeling very positive about my life choices at the time so none of my family was in attendance. I started to explain this to the gathering when Josh loudly announced that this was not a problem because I was now a member of the Williams family. I immediately went over and kissed him right on top of the head! I think I knocked off his hat. During the party afterwards, I remember Josh dancing from one group of women to the next. I can see him now, a straw wide brimmed hat on, moving from group to group, not really dancing with anyone, just having a good time.

 

I think we have a picture of him dancing in our handfasting photo album and I wanted to add it to the photo boards that Janet and Terry, her mom, were making for the memorial but I didn't think of it until after they were done. But I think I achieved my goal, I now have a snapshot in my head of him dancing with his hat on amongst the lesbians…

47% uneditted

When my MS symptoms started to get progressively worse over my 10 years of working at the college, I saw importance in publicly struggling with my disability. Although I tried to hide the most personal aspects of my illness, I felt that I was perhaps one of the few working disabled people that students and staff might be exposed to and I wanted to be a strong example. A coworker sometimes referred to me as The Face of MS. I was proud of this role that I played. In retrospect, I realize that I may be making myself out to be some sort of heroic martyr in this blog post, but it's how I genuinely felt.

 When I had to go out on disability, I felt defeated; as if I had allowed the MS to win. Although I had been working for almost 30 years and paying the appropriate taxes, I still felt guilty and inadequate when I had to start collecting Social Security and Medicare. I had paid for these benefits but I did not feel right taking them. It sounds very dramatic, but losing your job, no matter what the reason, is demoralizing and humiliating.

 It took a long time, but I finally got over my feelings of inadequacy… Mostly. When I heard Mitt Romney’s comments that he made on the secret tapes of the fundraising event, I felt he was speaking about me. I had a new role; I was now The Face of the 47%. I was one of the 47% that he didn't feel was worth his time. I realize that a candidate always concentrates his campaign energy on those people he feels he can get to vote for him. But what I understood his comments to mean was that unemployed people receiving public support like me, no matter what the reason, were drains on society. If he were to win the election, I feel as if he would act as a master plumber and clear up all the drainage problems he feels are caused by the 47%. He has acknowledged that his comments were not misinterpreted or taken out of context by the media; his only stated regret was that he had not spoken more elegantly.

Mr. Romney cannot be President of the United States and only recognize half of the population of the country. I hope that the 47% and their friends and family will vote on November 6 and show him that his attitude and statements are unacceptable and not befitting the leader and chief of the country.

disenfranchised unedited

My mother was a stay-at-home mom and I spent a lot of time with her when I was little. When election time rolled around she always took me with her when she voted. I remember her picking me up in the voting booth so I could make her selections. This is a strangely poignant memory for me. Her civic mindedness rubbed off on me.

 Although I didn't begin voting until after college, I did begin my political career by protesting and campaigning for favored politicians while I was at the University of Delaware. I have acted on behalf of local, state and national politicians and attempted to influence them ever since. I haven't missed voting in an election since finishing college. It's clear that the political system and voting are very important to me and the country. I'm sure you can understand how the recent events in other states have affected me. I'm so glad I live in little foreword leaning, Democratic Delaware.

 

I was very alarmed when threats to the voting process moved close to home, to the neighboring state of Pennsylvania. Pennsylvania is joining the growing list of states that are attempting to disenfranchise their populace. Pennsylvania is requiring that all voters provide a different form of picture ID beyond what they've ever had to show. This change will primarily affect the elderly, disabled and poor who don't have the money or means to get the new identification. The methods of identification that have been used for years will no longer be sufficient. Those that will primarily be affected are traditionally Democratic demographic groups.

 

I agree that the current security conscious climate requires additional steps to be taken to protect the voting process. However, this change should not take place a few months before a major presidential election, causing large numbers of people to potentially be unable to vote.

This situation is not unique to Pennsylvania. Texas attempted to pass a similar voter ID law, but it was overturned in appeals court on the grounds that it was unfair to the lower income and minority voters.

 The Republican Party in several other states is taking different measures to block people from voting or to make it more difficult to vote. Ohio is attempting to disallow early voting, an option often used by the Democratic demographic groups. The primarily Republican government of the state passed a law to stop early voting and this issue is currently being fought in the courts. In Florida, Republican officials have attempted to place restrictions on voter-registration drives. Republican-imposed rules made it almost impossible for progressive groups to register new Democratic voters. These restrictions have since been overturned but several months of registration time were lost. Who knows how many people could have been registered to vote during that time? There will be a limited window of opportunity to continue the voter registration drives before the presidential election so Republicans did succeed to a certain extent in their efforts to suppress the Democratic voting effort in Florida.

 I am very disturbed and disappointed that the right of every US citizen to vote has fallen victim to party politics. If a political party cannot nominate a competitive candidate, then please concede the election rather than disenfranchise potential voters.

Mrs. Romney's MS unedited

I was watching the news a few days ago and they were discussing how Romney is defending himself against the accusations that he is out of touch with the experiences of average Americans. Mrs. Romney said that they were very aware of struggle like the average person because they deal with her MS. I know MS is difficult to deal with for anyone, but her statement really got my goat.

I really don't believe that the experiences of a chronically ill multimillionaire are even vaguely similar to the experience of the average person with this illness. Mrs. Romney has practically unlimited resources at her disposal whereas the average person must depend on insurance to meet their health needs. As I've said often before, insurance companies view a patient with chronic illness as someone who will not benefit from many services and treatments because they will show no improvement. Thus these services and treatments are not medically necessary.

For example, Mrs. Romney can afford a home health aide out-of-pocket if there is a problem with the insurance. An average American with insurance receives home health aide service for a limited period of time from the date of the onset of the disease. Someone on Medicare receives this service for an unlimited period of time, but only three times a week. In another example, although physical therapy is known to be beneficial to an MS patient according to doctors and physical therapists, insurance companies find it to be not medically necessary. If the patient cannot afford to pay a physical therapist out-of-pocket or make other arrangements, they will not receive this necessary treatment. These are just two of many examples I could give that show that a patient with unlimited resources has an advantage over someone reliant on insurance, Medicare or Medicaid.

From its initial onset, the progression of MS is different in each patient. The level of disability, the symptoms and the speed at which it progresses varies from person to person. I have the most severe form, chronic progressive multiple sclerosis and I've been dealing with the various symptoms for over 20 years. Clearly from observing Mrs. Romney in her various public speaking events, she has a very mild form.

I don't doubt that Mrs. Romney faces many challenges because of her disease and I don't want to give the impression that I wish her ill. But as a multimillionaire, her experiences cannot compare to those who have the illness but have limited resources. I think Mr. and Mrs. Romney be to find some other way to prove some point of commonality with the average citizen. Their struggles are not mine.

 

 

 

 

 

 

 

 

 

 

PACs uneditted

Because I am bedbound and have a lot of blocks of free time, of course I end up watching a lot of television. The political advertisements have been driving me crazy, but more so than in previous election times and for different reasons. Janet has mentioned her dislike of the advertisements on both sides because of the backstabbing and muckraking. Of coarse, I don't find these qualities redeeming but I've noticed something else about the advertisements that bothers me even more.

After about 7 PM every night, each grouping of advertising includes at least one pro-Romney or anti-Obama commercial. The majority are not directly sponsored by Romney’s campaign, but are paid for by different Republican Political Action Committees (PACs). These PACs are run by various influential Republican multimillionaires and billionaires. Because of political campaign funding laws, these multimillionaires and billionaires are limited as to how much they can fund Romney's campaign directly, but they can " hide" behind these groups and support their candidate on a much larger scale.

 I know it's all legal but it shouldn't be. There are campaign funding limits and there shouldn't be loopholes to get around them. I don't care which candidate takes advantage of these loopholes, they are wrong and shouldn't exist. The limits were made with the idea that they would help keep candidates from being overly influenced or bought.

 Similar laws exist to limit the influence that lobbyists can exert on candidates or politicians and the politicians have been brought up on charges for showing favoritism to different lobby groups. I'm trying to figure out the difference between millionaires and billionaires trying to get one of their own group into office and thus having influence over him versus a lobby group trying to buy influence over a politician. I know these situations are different, but I do see some marked similarities.

 I really appreciate the fact that Obama refuses to attempt to get much millionaire support. He started out his campaign years ago as a man of the people and he has continued to stand on that philosophy. I know that if the PAC money was taken away, Romney and the Republican Party still could personally pay for a lot more commercial time than Obama and the Democrats; it just might be a little fairer. I like the idea of getting rid of all Political Action Committees and going back to the old way of doing politics.

The O

Those of you who know me know that I enjoy women's basketball and Eagles football. I guess it's not a stretch to find out that I actually like almost every single sport known to man. Just to maintain domestic harmony, I don't subject Janet to my sports desires on a regular basis… Except every two years, at Olympics time.

 Right now I'm in seventh heaven… Every sport you can think of is available during a two-week period and Janet humors me during the O. You can watch all sorts of sports both common and unusual; table tennis, water polo, beach volleyball, equestrian, team handball, swimming, gymnastics, soccer, basketball etc. And with the advent of free cable television channels, I can find a sport I want to watch 24 hours a day. One of my pet peeves has finally been addressed; women's sports are being given equal television coverage!

 For a week leading up to the start of the Olympics, I was practically jumping out of my skin with excitement. On Friday, the day of the Opening Ceremonies, I told my health aide to watch for it that night. She acted excited, and then got a concerned expression on her face. She turned to me and asked “Those eye countries aren't going to be in it, are they?" I expressed confusion… I had no idea what she was talking about. She then said," You know, the ones we're fighting." I then figured out that she meant Iran and Iraq. I chose not to tell her that we hadn't been at war with Iran, that we were finished fighting with Iraq and we were now fighting in Afghanistan. For once, I chose to avoid the politics and the recent history lesson. In my current frame of mind, it was more important to me to tell her about the O, clearly she didn't get it.

I explained that the Olympics are not supposed to be about wars or politics; they are supposed to be above all that. They are a tribute to good sportsmanship and national pride overcoming world politics and squabbles between nations. I tried to explain how Muslims and Jews, North and South Koreans, Iraqis and Americans and Muslim men and Muslim women all of whom have disagreements for different reasons but march together peaceably during the Opening Ceremonies. Any differences they have are resolved civilly at the different athletic venues.

 I knew my argument had fallen on deaf ears when, after I thought I made my point, she then proceeded to say, “So I guess they are allowing those countries in, anyway." Sighe

 I managed to get over my annoyance and enjoyed the opening. I hate to admit it, but when I hear some of the Olympians stories, when I watch my favorites win and I see the medal ceremonies I get teary-eyed. They don't have to be American (although it helps); like the South African amputee sprinter or the British teenage diver, they or their families just need to overcome some sort of obstacle to get there. The Games turn me into a bit of a sentimental sap but I seem to like it that way.

 Unfortunately, every night NBC has the local late-night news after their prime time Olympic coverage. Every night, my cocoon of sentimental warm fuzzy feelings is burst by stories of murder, rape and robbery. Welcome back to reality. I wish the Olympic spirit would pervade our everyday lives although I know some people will say I'm being too simplistic and unrealistic.

Vote or don't complain to me

I often have people complain to me about politics in the United States, Delaware or locally or how the country or state is doing. I always suggest that rather than complain to me who can do nothing about it, why not call or write to their state or national representative. Then I get an answer that annoys me all the more…" No, I'm not political" or " I don't want to get involved like that." AAARRRGGGHHH!!! I then ask if they've voted and of course they haven't. I then inform these people they can't complain to me again until they have voted.

I thought it might be helpful to point out all of the ways… Or at least as many as I can think of… that the government affects us. So, with that in mind, you can't complain if:


·         You breathe and thus benefit from the EPA

·         You drink water or beverages made from water and thus benefit from the EPA

·         You think you may live to retire and thus would benefit from Social Security and Medicare

·         You or your child may want financial help going to college… Apply for federal financial aid

·         You and your child enjoy reading books from the public library complements of your local government

·         You and your family go to the beach and notice a beach replenishment project in action paid for with state and federal funds

·         You drive anywhere and the roads are constructed and maintained partially or in full with local, state or federal funds

·         You and your family go out to dinner to a restaurant that is inspected to ensure safety and cleanliness paid for with state dollars

·         You or someone in your family develops a serious chronic illness with no known cure…  some of the research is paid for with your federal money

·         You or a family member has to take medicine that is federally approved and inspected, of coarse paid for with federal funds

·         You and your family decide to go on vacation see the Grand Canyon or other natural or historical wonders maintained with local, state or federal dollars

·         You enjoy listening to or watching informative television and radio; NPR and PBS are partially federally funded

·         Your home catches fire and firemen with their firefighting equipment, paid for with state or local dollars, arrive and save your house

·         You have a break-in at your house; the crime is solved and your property is returned by the police, thanks to state or local dollars

·         You or a family member uses your bathroom facilities and flushes; the sewer system was built and maintained with state and local funds

As you can see from my rather long winded rant, almost all aspects of our lives are affected, I believe positively, by the government. We can't breathe, eat, drink, have fun or take a dump without some form of direct or indirect government influence. I agree that everything isn't rosy right now but if you want the infrastructure to be expanded or at least maintained and if you want the government programs you use to continue then you have to speak up. If you don't want to call or write your government representatives, then the way you speak is with your vote. If you don't want to vote, I don't want to hear your gripes…

The accident story unedited

Friends often ask me why I don't miss driving my van since I insisted on doing it for much longer than I probably should have. I think most people see driving as a reflection of personal freedom; they can get in a car and go anywhere whenever they want. I personally have a much different attitude about driving. I never enjoyed it because it always made me tense. Driving for me was a matter of necessity. I needed to get to work, Delaware's public transportation system sucked and the disabled transportation was unreliable. I didn't feel like I had a choice and I kept driving until the universe made the decision to stop for me.

 As the MS progressed, my legs became weaker and spastic and a one point I stopped driving and tried public transportation. I used it for several months to get to work and doctor]s appointments but Janet had to keep picking me up when the bus drove by me as I waited. It happened once at the bus stop locally and then twice at a transfer stop in the middle of nowhere. I complained twice to the appropriate office and they attempted to address the issue but it continued to happen. I did not want to use the disabled transportation because it was notoriously late and did not run at the times I need it. I went to my neurologist and she thought I could safely drive again after she changed my medication. Janet gave me an informal driving test and cleared me to drive so I started again.

Things were fine for several months. Then one morning, I pulled away from the curb and my leg just felt “not right." I pulled over, adjusted myself in the seat, assumed that resolved the problem and drove off again. I turned the corner, drove to the stop sign at the next corner but when I tried to move my foot to the brake it wouldn't go. As the van moved toward the intersection, my leg started to spasm with my foot still on the accelerator. You can imagine the effect. I burned rubber through the intersection and luckily made it through unscathed. I knew the next intersection was a busy one that had a traffic light so I wanted to resolve this problem before I got there. I tried to steer with one hand and move my leg with the other but I was just speeding up. I was getting desperate, so I took both hands and tried to move my leg but the spasm kept getting stronger and stronger and my leg was not moving an inch. When I tell people this story, they asked why I didn't try the emergency brake or getting the brake with my other foot. I usually sarcastically respond, " You try being in this situation and see what you think of while you're in the middle of it." That usually shuts them up.

 Anyway, I was going so fast at this point that I didn't realize that had I made it safely through the intersection… I was just concentrating on moving my damn leg. From a realistic health perspective, it was probably good that I didn't know what was coming next because I would've tensed up and caused myself injury. I didn't realize that after the intersection, the road has a gradual curve. As I struggled with my leg, the van reached the curve, vaulted over the high curb, crashed and squeezed between a huge tree and a telephone pole and a hit a car in a driveway head on. Although I was uninjured, I have fragmented memories of the event. I remember sitting there and taking a deep breath, checking in with my body, spitting pieces of broken windshield out of my mouth and then looking around. The windshield was gone, the passenger side of the van was totally crushed in, all of the airbags were inflated, and the contents of the glove compartment were in the backseat…

The neighbors that were home during the day heard the crash of course and ran over to see what they could do. A man came over and found my glasses in the driveway, handed them to me through the broken windshield and called 911. We couldn't get the driver side door open but I wouldn't have been able to stand up anyway. I couldn't believe I really was okay after all this. I wanted to go to the hospital to make sure.

 Next, a police officer arrived and asked for my license. It took a while to figure out it was in the backseat with everything else from the front area. After he reached through another broken window for the license, he took down the necessary information. He then tried to give the license back but I refused it… I was done driving. Then the EMTs arrived and I explained my physical condition and limitations. They eventually got the door open and I did attempt to stand up but almost fell. As I was going down, one of the EMTs swung me up over his shoulder and carried me to the stretcher that way and they took me off to the hospital. In the ambulance I mentioned my concern about my scooter which was in the back of the van. The EMT riding with me showed me pictures he had taken at the scene. That was the first time I really saw the extent of the damage but to my relief, I saw the scooter looking pretty intact, poking slightly out of the mangled back hatch.

 I couldn't believe the damage I saw in the pictures; the car I hit was totaled, all of the windows and tires of my van were shot, the entire passenger side was crumpled, the front end was crushed, the driver’s side was banged up and the back hatch looked twisted. There was glass everywhere and fluids from both cars were draining into the street. Apparently, the homeowners where I had the accident were not present. The car I hit belonged to their mother in law. They had taken her out to lunch in their car. It's been years since the accident, but I still imagine their reaction when they got home. It must've been priceless. I still feel really bad about it, but strangely enough I felt the worst about hurting the tree.

 I called Janet from the ambulance and she met us at the hospital. She was relieved to see I was okay and then went to get my scooter and things from the van. She said that if she had seen the van before she saw me at the hospital, she would never have believed I had survived. They checked me out at the hospital and I did not have a scratch. The frames of my glasses were bent and my scooter worked fine but the fiberglass body needed to be replaced. My father helped me find a replacement van that strangely enough was the same make, model and color. Coworkers that didn't know I was in an accident just assumed it was the same vehicle. I hired the granddaughter of a friend to drive me. Janet found a gigantic spring from the van lying on the ground in the salvage yard and took it as a souvenir; it is sitting in our garden repurposed as yard art. Other than being out the cost of the replacement vehicle, the cost of the scooter repairs, the cost of the increased insurance and the cost of my driver, the accident was not a big deal. Many of my friends and family were relieved I wasn't driving anymore anyway; they just didn't want it to happen this way. If anyone still has questions about why I am not driving anymore, please look at the following link:  http://photos.aetnahhl.org/default.aspx?aid=218

I think I could be the poster child for why people should stop driving when they are no longer physically able.

Vacation Adventure, first draft

From my bed, I can look out the window into the sunroom and see a souvenir from our most memorable vacation hanging on the wall. It is an incredibly thick braid of sweet grass, burned at one end. If you go to a powwow, you can find sweet grass braids but they are much smaller. There is quite a story surrounding the sweet grass and I'll try to relate it as best I can.

Because of my MS, Janet and I vacation in the North every summer to try and stay cool. We decided to head further up that we had ever gone, to Prince Edward Island. Since we didn't know much about it, as a librarian it was my job to research it. I ordered a bunch of books through interlibrary loan and downloaded articles off our databases. Janet's job was working on the Internet. To make things easier for Janet on the trip and because we enjoy her company, Janet Louise joined us on our great adventure. We became the traveling trio of Pam and the Janets.

 We were excited to find out that there was an Indian preserve on PEI. We have always enjoyed Native American culture and try to integrate it into all of our vacations. Lennox Island on PEI was going to be a definite point of interest for us.

 When we crossed over the bridge onto Lennox Island, we could tell it was an impoverished area. The houses were small and old, the roads were rough and there were no streetlights. The biggest and best kept buildings were the church and the visitor’s center/café. The visitor’s center seemed to be brand-new and I was immediately struck by the fact that it was totally wheelchair accessible although we knew there were no disability laws in Canada. When we went in, we noticed an artist and his assistant painting indigenous designs on the walls. Janet Louise, as the most gregarious one of our party, struck up a conversation with the artist. His name was Red Feather and he was a traveling artist hired by the tribe to decorate their new center and restaurant.

 The center was closed at the moment but the restaurant was open and the artist invited us to eat with him. The food was the best we have found so far and because it was on the reserve, there were fewer taxes. I think he was intrigued by my positive attitude in spite of my disability and even more so by Janet Louise. He introduced us to the restaurant manager and his friend. Once they realized we were lesbians, after the restaurant closed, they brought all their gay friends over. I met more gay folks in one night than I had in years. We even met the official Bacardi Drag Queen for the province. Although Red Feather was not gay, he enjoyed the gathering.

 He invited us back the next evening after the restaurant closed to watch/help with a painting of a turtle he was going to do on the ceiling. Apparently the tribe, known as Micmac in English, adopted the turtle as their tribal symbol. Ironically, it also happens to be my favorite animal partly because of the significance it has in Native American mythology. Of course we all agreed to come back the next evening. How could we not?

 When we got there the next evening many of our new friends were there along with a number of the youth of the tribe. In spite of many of the kid’s insecurities about painting or climbing ladders, within a half an hour Red Feather had them all helping out like professionals measuring and making pencil outlines. Then Red Feather made the final outline with painters tape and everyone helped fill it in. I was shocked when he asked me to climb the ladder and do the last bit. At this point, I was able to walk using a walker but spent most of my time on the scooter. I felt understandably doubtful about climbing the ladder and only agreed when he said he would climb behind me so I wouldn't fall down and Janet would stand next to me on the ground so I wouldn't fall over hopefully. I did manage to climb up and I did the last few brushstrokes on the turtle's shell.

 He said that by helping with the painting, a piece of my soul would always be with the Micmacs on Lennox Island. I would always be drawn to return there. It was a rather intense experience. Apparently, Janet took pictures during the entire time. The lighting and reflections that showed in the pictures were not there at the time she was taking them. Again, it was intense…

 Red Feather invited us back the next night for something special for me. He told the Janets what he had planned but would not tell me. When we told the women that ran the bed and breakfast where we were staying about our adventures thus far, they assured us that there was more to see on PEI then Lennox Island. For me however, what had happened so far was much more exciting and interesting than going to see the Anne of Green Gables theme park for example.

 Each time we met with our friends on Lennox Island, we learned new things about their history and culture. They referred to themselves as "First Nation People." They referred to homosexuals as “two spirits" and were much more excepting as a culture to our lifestyle. They told us a few stories about tribal history. The Micmacs on Lennox Island had always been ruled by men but as time passed, they began having financial difficulties. They voted women into the Tribal Council and the tribe began to prosper. Another story they told us was about the recent history of the island. Until about 25 years ago, there was no bridge onto the island. When they needed to go to the mainland, in the summer they would row over but in the winter they had to walk across the ice. This was very dangerous especially when the thickness of the ice wasn't reliable. One day, a pregnant woman who wanted items for the coming baby tried to get the mainland and fell through. She was rescued and the baby was fine… We met her as an adult! Because of this new disaster, the Province finally approved the funding for the bridge.

 We ate dinner at the restaurant again with our newfound friends and after dinner most of them left except for Red Feather and Leslie, the restaurant manager. Red Feather informed me that as a tribal elder, he could make me an honorary member of the Micmac tribe. He gave me a name, Two Trees. He said I had to figure out what the name meant to me. It did not matter why he chose it. Since my legs were such an issue for me at the time, the name symbolized my legs remaining strong like two trees.

 He then asked, as one who practices the old ways, if he could bless me. Of course I agreed. He lit one end of the sweet grass braid and prayed in his language while moving it slowly around me to clear any bad energy. This went on for 15 or 20 min. When he was done I was feeling pretty drained. I heard him tell Janet that he thought I could use the blessing considering what might be in store for me in the future because of the MS. He then blessed the Janets so we would have a safe journey. We invited him over for breakfast the next day and while eating he made his intentions towards Janet Louise very clear. She explained again about her sexual preference and after some more chatting, he went on his way without unpacking his teepee from his truck. We continued in our exploration of PEI.

 When we got home Janet burned copies of the pictures she had taken onto CDs and sent one to the tribal school since so many kids were involved with the painting and she found Red Feather on the Internet and send him a copy as well. She hung the braid on the wall in the sunroom and when the breeze comes in through the open windows just right, it wafts the sweet scent throughout the front of the house.

 We've gone back several times to PEI and each time connected with a few of the friends we had made. Each time the tribal community seemed to be doing better. Although the restaurant closed, pipes were being laid so that all houses would have running water and the main road would be repaved afterword. On the third floor of the visitor center, dorms were being built for a youth training center.  Thte restaurant would be the cafeteria. Although it'd be repainted, I could still see the outline of the turtle on the ceiling. I was sorry to see the painting go, but I was glad to see how the tribe had prospered.

meds rant

To:       Sen. Henry, Rep. Barbieri, Rep. Hudson. Sen. Blevins, Sen. McBride, Sen. Sokola, Sen. Hall-Long; Rep. Heffernan, Rep. Kowalko, Rep. Mitchell, Rep. Mulrooney and Rep. Schooley

Re:       Senate Bill 252

Date:    6/23/12

My name is Pam Stewart and I have the chronic progressive form of multiple sclerosis. In order to control the progression and manage the pain of the disease, I take a number of medications. Because of the cost of the copayments, I have changed the majority of the medications to the generic form. However, the medication I consider to be most important, the disease modifying medication called Rebif, does not come in generic form and is astronomically expensive.

I unfortunately learned how expensive when my insurance changed due to civil union (and I will not begin Medicare until September of this year.) When I ordered my three month refill after the change, I was advised that it was a specialty medication and I was responsible for 30% of the cost which translates to over $1,000 a month. With my previous insurance, I was paying $60 a month. Because I live on a fixed income from Social Security, this new co-pay amount was prohibitive. Thankfully, the medication company was able to give financial assistance or else I would not be able to afford the medication. I do not know if Medicare has the same tier system.

If I was not able to get the medication, my disease quite probably would have progressed. From a societal and governmental standpoint, this would have cost a lot of money because I would have run through my personal savings due to increased personal care costs and then I would have been totally on the public dole. From the insurance company perspective, disease progression means increased patient needs and increased susceptibility to further illness, thus increased costs. From either perspective, in the long run the increased cost of the medication to the patient means an increased cost to the insurance company and society.

I strongly encourage you to continue your support for Senate Bill 252. Controlling the co-pay costs of specialty tier medications will greatly benefit the patient, the insurance companies and society as a whole. I believe the Bill will serve all parties equally well.

Thank you again for your consideration of this matter. Please feel free to contact me with any questions at4 pamstew1@yahoo.com.

Sincerely,

Pamela G Stewart

Advice to the newly diagnosed

I was surprised a few weeks ago to get an e-mail from a family friend. It turns out that for the past year or so she has been exhibiting various symptoms that her neurologist was thinking indicated MS. She asked for my advice and suggestions. This is what I shared with her. I also made it clear that many of these items were things that I wish I had done. You know the old adage, " do what I say, not what I do."

·         Deny the MS diagnosis until you have three test results that all confirm MS, for example an MRI of the brain or spine showing plaques, a spinal tap showing the appropriate abnormality and either another test like evoked potentials or a combination of symptoms. Sometimes the medical profession may find it easier to put a disease label on us before completing testing. There are many other things the symptoms could be.

·         Build a health care team who acts on your behalf in spite of medical costs or insurance challenges. If you don't feel that your doctor is acting in your best interest, find another. You can contact your local MS Society branch to get lists of supportive primary care physicians and neurologists.

·         Contact the MS Society in your area for support groups for the newly diagnosed and MS related exercise groups. I especially found the MS Society sponsored Aquasize groups very helpful. Make “Use it or lose it" your personal mantra. It is very important to continue exercising as long as you can and to develop a stretching routine. Consult with a physical therapist or even consult books in the library or appropriate webpages.

·         Fight any insurance claim denials. There will be a lot of them because the insurance companies do not feel it is medically necessary to support patients with chronic medical conditions. There are at least two ways I have found to get around the insurance company's policies. First, simply request the form they require to protest the denial. Fill it out; attach a letter explaining further circumstances and a letter from your doctor explaining why the item is medically necessary. Send it in by snail mail, return receipt requested. I found that if it is not sent in this matter, the company will claim non-receipt. The other one is a little sneakier; ask your doctor to change the insurance code on the request to something other than MS. For example, if your doctor requested an electric wheelchair for you, and the insurance company declined it, the reason could be because it is not medically necessary for someone with a chronic condition to have this. However, if the doctor resubmits the request with the insurance code for a balance disorder, it may go through. It did for me!

·         Assume nothing about the future progression of the disease. Everyone is different. I've met several people who have very mild symptoms; they might shuffle when they walk or have slurred speech. These folks are still working if they want. Then there are people like me who were asymptomatic for many years and then suddenly had an exacerbation causing disability. Then there are people I've heard of like Annette Funicello, who went from walking to being fed puréed foods in a hospital bed within a month. And then there are people who fall outside of these examples.

·         Be proactive. Even if medications take away most of your symptoms, things will probably still be gradually getting harder. Act before it's a problem. Move to a one-story house, or a first floor apartment. If you job is stressful or requires a lot of physical activity, find another one that you still enjoy but that is less taxing. Start eating more healthy foods. Cut out the high-fat, and throw in the green leafies. Although it's not a problem now, you'll be thankful later.

Annoying medical proposed legislation

I've been busy these past few weeks with a couple of writing projects. I'm entering a essay contests for my voice recognition program. There will be four winners, and they will get a free iPad and three years of updates for Dragon NaturallySpeaking. I'll give Janet the iPad which she wants, and I want the updates!


I learned from a Facebook post by an MS Society staffer that a bill was coming up in the Delaware state legislature that would be really detrimental to anyone on a fixed income that has a temperature sensitive medical condition. She went to Dover, the capital, to lobby against it. Since I can't really do that anymore, I wrote the following letter:

To Rep. Longhurst, Rep. Hudson, Rep. Short and Sen. Hall--Long,

I am writing to you regarding House Bill number 261 w/HA 1. As a long-standing Delaware resident with chronic progressive multiple sclerosis, I was disturbed to learn of the intention to amend the Delaware Code Relating to Termination of Utility Service or Sale.

The existing code protects people like myself who have a chronic progressive disease that is made worse by extremes in temperature,. When people afflicted with multiple sclerosis are exposed to hot or cold temperatures, it causes muscular and other problems that may eventually lead to the need for medical treatment and/or hospitalization. At the very least, this situation leads to extreme discomfort including the inability to move temporarily.

The part of the bill I am concerned about currently reads "In no event shall such termination occur if any occupant of any dwelling unit shall be so ill that the termination of such sale or service shall adversely affect his health or recovery." The proposed change reads "In no event shall such termination occur if the termination will prevent the use of life-support equipment or cause loss of life or immediate hospitalization of the occupant of the premises."

 As I'm sure you'll note, the rewrite of the bill does not take into consideration the fact that exposure to extreme temperatures causes people with some conditions like multiple sclerosis to experience gradual detrimental health effects. I am not just concerned for people with my medical condition. This could also have negative repercussions for the elderly and anyone with an existing health condition.

 I have no argument with the part of the bill concerning making payments towards balances owed for utilities. I agree that all customers should make good faith attempts to pay their utility bills and that utilities should be terminated if no payment attempt is made. However, if someone has made regular payments, although small, and has a documented medical condition that would be exacerbated by extremes in temperature, their utilities should not be cut.

 Thank you for taking my concerns into consideration. Please feel free to contact me with any questions.

If I learn anything interesting about the status of the bill, I'll post it on the blog. Hopefully it will just die in committee…



If I learn anything interesting

Community

Years ago, when I did " social work" type employment, all the programs and conferences I went to  were based on an idea expressed by First Lady Hillary Clinton," It takes a village to raise a child."

Life experiences have made me realize that a rewrite of Ms. Clinton's catchphrase applies to me these days. I would change her quotation to "It takes a community to provide quality of life to a differently abled person."

I used to think my life partner and caregiver Janet could meet all my needs, (beyond the services provided by the home health aide). After all, Janet is the MS Society’s Caregiver of the Year! But then something happened that made me realize how wrong I was.

It was Friday morning a week or so ago and my home health aide was not coming until about 1:30 PM. This was her last day for a while because she was 8 1/2 months pregnant and honestly, I was afraid to have her do anything. Anyway, Janet called me at about 10 AM and woke me from a sound sleep, causing me to have an extremely strong spasm. When I got off the phone with her, I realized the spasms were continuing and I was slowly but surely sliding out of the hospital bed. When I understood that I was in trouble, I managed to call back Janet and let her know that this was a 911 situation that I had no control over. The pillow we used to protect me from knocking into the hard metal rails of the hospital bed when I spasmed, was actually acting on one side as a ramp, causing my back to go right over the rail.

As I started to dangle over the edge, I dropped the phone but I could hear Janet's frantic messages on the answering machine to let me know she was coming and that she had reached a neighborhood friend who was on the way. By the time our friend Susan had gotten here, I was half out of the bed, trying to hold myself up with my right arm, which is not as strong as it used to be. In other words, I was almost on the floor. Anyway, Susan arrived in time to save the day and get me back in the bed. Janet arrived shortly thereafter.

 This close call us me to think about where I would be without my community. There are so many silly things… My friend who cuts my hair for example because I can't get into the chair at the salon. A large number of my community participated in the MS Walkathon, and supported me all the way through. Shortly after I was diagnosed with MS, a friend and her two dogs gave me weekly physical therapy sessions. When Janet needed a break as a caregiver, our friends volunteered to take care of me in shifts for four days so she could get away. Then there are the people who just come over to hang out for a while and make me smile And that's just the tip of the iceberg. I could go on for hours thanking people who have helped out in one way or another, and I still would miss a few.

 I am proud to say I am a community project. Without everyone's help, I'm not sure where I would be right now. I'm not feeling sorry for myself, I'm feeling thankful to all of you.

Time for protest

After my first year of college, my rebellious stage started. There were plenty of opportunities to express it. I joined Campus Coalition for Human Rights, Women Working for Change and the Gay and Lesbian Student Union. Through these different groups I protested locally in support of a woman's right to choose, against the University of Delaware's investments in South Africa many times, for gay and lesbian rights and in Philadelphia, New York City and Washington DC for similar classes.

 Once Janet and I got together, we continued this trend, primarily protesting in support of women's rights and gay and lesbian rights. As a matter of fact, one of our first  " dates" was to a protest in DC. We have a wonderful picture of us looking lovingly into each other's eyes, while wearing matching Gay Pride shirts with DC as a backdrop.

But people get older, they may get sick, they may not be able to do what they used to do. I naïvely thought that when this happened to us, we'd be able to hang up our protest signs and our armbands and have the next generation pick them up and carry on the fight. It seemed to work for a while, we've been out of the protest scene since I had difficulty walking about 10 years ago and the world seemed to continue without our voices. I was hoping my writing would be a big enough contribution.

Things have been going on politically that have pushed more buttons than Ronald Reagan did when I was in college. It's these Damn Tea Party People that have managed to reverse women's contraceptive rights to wire coat hanger levels and I worry about all the other rights that we finally have achieved. Janet and I finally were civilly unionized and if Santorum won the presidency, he had vowed to dissolve it. I no longer feel secure as a woman and as a lesbian.

 Janet and I have been talking… I'm in a power chair and she has arthritis in her feet and in spite of that we are starting to feel the need to do something about this. I'm not saying that the next generation didn't pick up where we left off, it just seems as if everyone needs to get active. We are threatened! There is supposed to be a big march in Washington DC in September. I plan to be there… How about you?

My bully – pulpit

I have to admit, because of my current reclining situation in the hospital bed, I often watch morning and daytime talk shows. One of the big current topics that struck a chord with me was the new movie," Bully". It brought to mind memories of elementary school. Then when my mom was visiting, she saw something promoting the same movie and struck up a conversation about my experiences as a kid. Then, when you consider that I've been in contact with my elementary school teachers lately, of course it's a topic I have to write about.

I don't know why I was at target… Or maybe I do. My deficiencies in the little girl world were many… To make it easier for a reader to follow, I'll bullet list    them.

·         I was a quiet introspective child who had a strong sense of right and wrong and related better to adults than children. I didn't make friends easily so I didn't have a lot of defenders.

·         I didn't have the trendiest clothing or accessories. My mom, when I was younger, wanted me to wear dresses to school a lot longer than the other little girls. When she finally conceded and allowed me to wear pants, she still wanted me to dress up and actually I agreed if I couldn't wear jeans. Thus, the reign of the pantsuits began; Hillary Rodham Clinton would have been envious of the selection. When I was finally allowed to wear jeans, my mother insisted on ironing them and when they got faded, comfortable and cool, she said they were worn out and threw them away. Thus my blue jeans were always stiff, brilliantly blue, with an ironing crease down the middle of each leg.

·         I also developed my womanly features early but did not get a bra until junior high school.

·         I was very uncoordinated, and always was the last to be picked for any sport from jump rope to kickball.

·         I was considered one of the lucky ones by doctors when I was diagnosed with scoliosis during a screening in gym class in about fourth grade. I had the privilege of wearing a Milwaukee back brace (that went from the pubic area to up around the neck) for almost 2 years.

·         I was found to be farsighted in third grade and to add to my geekiness, I started wearing glasses at a young age.

·         I was endowed with the final crowning glory, a great big gap between my front teeth. I don't know which was worse in the elementary school frame of mind, the gap or the braces that came later to resolve it.

 If you put everything in the list together, perhaps you understand why I was picked on endlessly from about third grade on.

I won't mention names, but there were several girls who lived in my neighborhood who were just wild. Because we were the same ages, I was expected to play with them, but I had nothing in common with them. I tried but they didn't want to play with me, so avoidance began but when we had to be together for some reason it was never good. There were also a few girls in class that didn't like me simply for the reasons listed above. The girls in class were the main instigators of problems at school. The girls in the neighborhood I just avoided.

 It rarely got physical at school. There were threats and an occasional punch in the arm muscle but that was the worst of it. The main ways to girls went after me were verbal. They had a wonderful song they made up about me sung to the tune of the Gumby Show theme song: "Pam was just a little green ball of scum, scum – be…" Perhaps it is selective memory issue, but I don't remember the rest. They would leave nasty notes in my assigned desk, draw on the top of it when the teacher wasn't looking to get me in trouble and leave things on my chair so I would sit in them and the list goes on. One thing that sticks in my mind particularly was when we had a class trip for a weekend to Mount Misery… The name should have been a warning. We were set up in cabins and thankfully I was not with any of them. We were supposed to make our beds when we got there and then meet up for some reason. The cabins were left unsupervised and one of my nemesis, I'm not sure which ones, went in and took my toothpaste from my bag and squirted it all in my sheets and all over my pillow. Luckily I was forewarned by the minty fresh smell of my bed and didn't climb right in. Thankfully one of the camp counselors let me wash the sheets in the camp machine but they were ruined because of the bleaching done by the toothpaste. I had no toothpaste for the weekend so I had trash mouth. In spite of the efforts of my enemies, I still had a pretty good time and had my first dance with a boy that I had a crush on.

Looking back on those days, I can say in all honesty that in spite of all the bad girls’ efforts, I still had some good times. I had a few select friends that I played hopscotch, jump rope and horsies with. I also was “friends" with several adults at Johnson School including the woman that watched the schoolyard during recess and the playtime breaks after lunch. I would hang out with her and chat and I really enjoyed our time together. I was a Library Aide and I liked my time doing it and spending time with Mrs. Gargodian, the librarian so much that I think it was a factor in me being a librarian as an adult. (She had such a great librarian name!) Under her tutelage, I learned to use some machines that are still used in libraries today and I could use them better than anyone else and repair them. Of course I enjoyed almost every single teacher I had there. I wouldn't be the person I am today if not for their hard work and encouragement.

 I don't know how I would have dealt with things if there was the technology then that we have today. If that wonderful little song, " Scum – Be Pam" was posted on Facebook rather than sung in front of a few classmates, it would have been a lot more difficult to get over. I think bullying is an issue that has to be addressed more strongly today than in the past. I don't think that old attitude of “If I could deal with it as a kid 30 years ago, then they can deal with it today" works anymore. Times have changed and approaches to problems need to change accordingly.