Happy Birthday Matt!

I hope all your wishes come true!

E = mc2

I have no idea what E equals mc squared means... I know that it is a science formula to calculate something... I know that it is the equation that is often associated with science and scientists... but... that's about all I know. But this guy did...

Albert Einstein. I like this picture of him as it relates to my topic today...because he is looking away from the camera... I also like it because there is something in his eyes, in this picture, that reminds me of my grandmother... which is totally unrelated. Albert Einstein has been identified as one of the most brilliant scientists... and also identified as having Asperger Syndrome. (Along with Jane Austen, Bill Gates, and Alfred Hitchcock) Aspergers is a condition. I can't say that it is a disability, because I don't see it that way. I can't say it's a condition from which people 'suffer', because I don't see it that way either. But it is a condition. A condition that makes people see things through a different lens, sometimes react to stimuli with hyper sensitivity, misunderstand social situations or not care to understand social cues/norms, and in most cases offers a level of intelligence and/or abilities to perceive specific things... While the students with whom I have worked over the years have faced various struggles that perhaps individuals withough Aspergers do not face... some of my strongest/favorite teaching memories involve these individuals.

I think back to one of the first students I worked with... I will call him Russ... his very petite stature accompanied this maturity well beyond his years. AS a sixth grader he was annoyed with other kids' desires to engage in conversations about their time with friends, tendancies to get off topic during classes, and inabilities to offer succinct intelligent answers to what he considered were simple questions. He came off as pretty abrasive to most people... and I found him fascinating. I think I have a picture of him somewhere... takenn on a field trip, where he, along with his peers, were exploring a tree house designed to show kids various habitats. In the corner of this large tree house was a spider web made of rope. Russ, in perhaps the first age appropriate action I had seen, (typically he was too grown up to engage in such behaviors), without thinking saw the web and began climbing on it and inviting other kids to join him. The picture I have is of him reclining on the web, hanging if you will, between the ropes, and he is smiling... a relaxed smile that made the absence of his normally furrowed brow quite noticeable. Don't get me wrong, he was a kid who I found very engaging. He preferred to be with adults than with kids his own age. When I would use a word he had not heard before, I felt smart and accomplished! As the year progressed I found things that amused Russ, and would figure out ways to puzzle him, which he both hated and revelled in...

Since Russ I have had the pleasure of working with several students with Aspergers and have found that with each of them, I had to work had to build a rapport with them that involved trust... they needed to trust that I was not ever going to treat them or speak to them in a way that insulted their intelligence... watering down language was unacceptable.

Five years ago, I met "Jay." He was a man with much determination...which is a polite way to say he was a stubborn kid! And I loved that about him. Like Russ, his brow was often furrowed and it took a lot of effort to make him smile and to get him out of his shell. He was a stereotypical bookworm, right down to the glasses! The beginning of the year was a bit tough. Teachers asked me if he could DO anything... he was a kid who needed a lot of wait time. When he was asked a question it took him time to digest the question and more time to formulate a thoughtful response. He did not want to offer unintelligent or irrelevant answers. Teachers began learning and appreciating this about him. He was the kind of kid who wanted to come to school, do the work he was told to do, and go home. From his perspective, had he been the only student in the classrooms with the purpose of not having to deal with kids who were not serious students, he would have been satisfied. He was confident that he knew as much as his teachers, if not more, about the given topic, and at times he did. He was scheduled to come into my room one period a day. He hated writing.. not getting his ideas down, he could type and express himself well, but the physical act of writing was, to find a comparison, painful for him. When he would come into my room, not so happy to be there at first... I began ignoring him... which seemed to pique his interest in me more than me trying to engage him. I watched him and realized that his vocabulary was extensive and knew that I would have to bring out the big vocabulary guns to even have a chance with him. I would strategically engage in conversations with my assistants and would purposefully say words that I knew would get his attention. Jay had the ability to complete his work while being acutely aware of every conversation occurring in the room. I began to notice that he would smirk at some of my comments and I began to feel out his sense of humor. After school was in session for a few weeks, his math grade slipped. This was a kid whose math grades had never been below 90s. He had entered a part of the curriculum that involved unfamiliar concepts and required multiple steps to follow... and he was being asked to write out every step, to show his work. This was frustrating for him. So I began attending his math class and would scribe for him... what I found was that Jay didn't need a scribe.. he just needed to be able to write his answers down without having to show his work. He would look at a problem, stand up, pace a little, move his fingers as he had his hands held together... he would walk back to me and say the answer to the problem, the CORRECT answer... I didn't need to be in that class for him, but to help the teacher help him, and as it turned out, a few other students as well. It was in math class where Jay and I really began building our rapport. I would walk into class, passing him, brow furrowed, sitting at his desk. I began greeting him, in spite of his interest being piqued when I ignored him in my classroom. But I changed my greetings to him. One day I would say to him, Good Morning Ralph. The next perhaps I would say, What's up Polo? And then maybe I would say Hey Billabong! He would look at me skeptically and then after about a week he said to me, "My name is Jay. I know you are aware of my name. Why do you reference me as other names?" I told him that his clothing was the reason. His clothing, on most days, had brand names or logos on them. I told him I assumed that his mother had sewn his name into his clothing, like mothers do when kids go to camp, and since I assumed he wasn't going to wear other kids' clothing, that he had many names. He grinned at me, not quite knowing what to think. That's when I knew I had him... The way MY mind worked amused him and we started various subtle competitions. He began trusting me and the two other women who worked in my classroom as my assistants. By the end of the year he would laugh with us every day, would seek us out to share something about his day/life, and trusted us enough to try new things, like playing toss with one of us using lacross sticks. (I admit that I was terrified that he would not catch the ball and it would hit him between the eyes and break his glasses... but he caught it!) At the end of that year, as we parted ways, as he moved on... I hoped that he would be okay, that he would not get eaten alive at the high school. And as a teacher, hoped that I had made a difference. That next fall, probably October, my two assistants and I were out to dinner together at a local sports bar. As we were leaving we saw Jay and his parents and Jay's reactions to us, was priceless. He was so excited to see us all, he rushed over, noticing us before his parents did, and hugged each of us. It's one of those moments that still chokes me up!


This year I have a young man, who I have now known for three years. (Although this year I have actually gotten to work with him, know him, versus knowing of him.) He is brilliant. Truly. He is a person whose brain is so scientifically wired, very black and white. (Not unlike other kids with this diagnosis.) He is struggling with the social aspects, in a way that his different than my other students with Aspergers have. He seems more invested in the social realm yet can articulate that he does not like that he is expected, by his peers, to engage in social activities. He wants to not have to conform to the expectations he is acutely aware of, yet has a strong desire to be one of the popular kids. He is obsessed with his laptop. In Maine every student in grades 6-12 are issued a state laptop. He often uses his laptop for things like games, that he knows he is not supposed to do. And if discovered he loses access to his laptop, which sends him into rages at times. His brain is consantly busy, thinking about more things at one time than I probably think about in a day. He is aware that these thoughts make it difficult for him to focus and accomplish tasks and it frustrates him. He gets very angry when people call him names or reference him in derogatory ways... and he lashes out, sometimes physically, then is overwhelmed by his regret for his actions. In a recent conversation he shared with me that nobody understands him because he has Aspergers and nobody ever will. That broke my heart.

So... I decided, with permission from my current student, his parents, Jay, and his parents, that the two should meet with the purpose of getting to know each other and to be able to help each other discover what Aspergers is all about for them... Today was our meeting. I invited both boys and one of my current assistants, to have lunch with me. It was so interesting. Part of me wanted there to be this AMAZING instant connection between these two guys, who really do have a lot in common, although they present very differently. I bought pizza, figuring pizza would be a way for them to start talking without the conversation feeling like the main focus. I tried to facilitate the discussion... Not sure if you can picture this or not.. but... we were in a conference room, about 10 feet by 8 feet I would guess.. seated around a conference table complete with open pizza box, cups, paper plates, and a bottle of root beer. My assitant, Leslie, and I were diagonal from one another as were Jay and my current student. Leslie and I were facing towards the center of the table, both boys were angled so that they were facing away from the table. They were both quite awkward in the Aspergery way I adore... as they stumbled through the conversation, trying to not interrupt and be on their best behaviors...

I had to facilitate a lot... so that instant connection was not present... which didn't surprise me... knowing their profiles... When I first had this idea, about having these two meet, I thought it would benefit the younger student, to have the wisdom of the older boy. (He is 19 now, so not really a boy, but to me, he is still my little 8th grader!) I do think that Jay's wisdom and experiences will impact my current student. But... What is even better than that.. is that I think both young men will get to learn about themselves as they learn about each other... and see in each other qualities that they appreciate and begin to internalize that those characteristics that they, themselves, possess, are worth appreciation.

I think that both want to meet again and I am hoping maybe every couple of weeks we can do this! I do love the work I do with kids... sometimes it's not all about the bookwork... but the relationships!

What a good day!

MRI

This picture cracked me up when I saw it.. so I had to share!

Tomorrow will be an interesting day... One that will test this whole idea of having faith...In June I will return to Boston to see my PVNS superhero, my doctor... it has been almost two years since I last danced out of his office after hearing good news, that my knee was still pvns free and that he didn't need to see me for a couple of years... so, in preparation for this June visit I need to have an MRI. Tomorrow is that day. Yes it seems early to have an MRI for an appt. that is not until June, but loyal blog readers know that in the past the insurance hoops have been many and jumping through them has proven difficult. So... this time I started really early and, thankfully, my primary care doctor's office (new since my last round with testing), has been awesome!

My knee has been doing well... I have had a few instances this winter where it felt stiff, but I am hoping that it's nothing more than cold weather and a bit of arthritis... which has been present since surgery. But, knowing that I am going to have an MRI to see if PVNS has begun to revisit my knee... causes some anxiety. I have recently begun communicating with a couple people who came across my blog... who are at different points within their own pvns journeys... it has brought up memories of how much pain I was in... and feelings of gratitude for how far I have come.

I have no reason to believe that my knee is anything but healthy... so...I am pretty sure that the results of the MRI tomorrow... will be... positive... and maybe, just maybe the results will be sent to my Boston superhero and he will call and tell me there is no need to come see him because the knee looks healthy! Or maybe I will go to see him in June and he will say... 'Things look great, go on, get out of here. I don't need to see you again, unless you begin to have issues.' Knowing my doctor... who is pretty protective of his pvns patients... chances are, I will need to return in a couple more years... but time will tell... so.. fingers crossed for tomorrow... I know that the MRI itself is not all that fun... 45 minutes to an hour without movement can be tough... but I can do it... But that doesn't stop the butterflies in my stomach...

Introducing...

Yesterday I had an AMAZING day! So Amazing that I forgot it was St. Patty's day! The new man in my life, Matt, had the day off and we spent it together. We visited Woodsprite Orchids in New Glouser, Maine. (Click here for website) Then we had lunch, and walked Back Bay! (My first time around it this year!) We then made dinner at my house and holy moly, can the man make guacamole! yummy! What a GREAT day! He is a great person and I feel very lucky. Oh happy days!

By the way, ALL of the flowers pictured here are orchids. I did not realize there were so many varieties. Even the Lady Slipper is an orchid! I took many more pictures, but figured I would share these ones.

Blossoms

Despite the difficulties I have written about in this blog over the last few years.. I have always known how lucky I am... to have people in my life that are incredible. In addition to having been born to parents who let me know how much they love me on a daily basis... I have a sister who will always be there for me... I have had the opportunity to know all of my grandparents with many fond memories of each of them and continue to build memories with my one grandparent who continues to live her life... As I have become an adult my relationships with my aunts have become more cherished... and there are my friends... friends who I consider to be my family.. whose joy brings me joy and whose sorrow brings me to tears... These amazing people in my life have been there for me, even when I made it hard for them... and for that I love them all.

I have always wanted to have a relationship, to fall in love with a man whose character is up to par with the other people who I value so much in my life. I have wanted to find someone who makes me smile, who has my trust and respect.. someone who takes pride in who he is and what he does... Someone who does the right thing... who can be playful and serious, sensitive and strong... and someone who makes my heart happy. I have entered into a relationship with someone who possesses these qualities... and many more. It's very early in our relationship, but I believe that we are building a relationship based on our friendship... I feel very fortunate that he has come into my life and while the future is unknown... I am looking forward to what lies ahead and am taking time to enjoy it and cherish the moments..... As it blossoms more and more... I appreciate its beauty.

I am happy.

PVNS on my mind...

I am waiting for my doctor's office to call me... my local doctor. I have an upcoming appointment in Boston, in June, to check my knee for PVNS. I have no reasons to believe that it is back, but some knee pain a few weeks ago made me raise my eyebrow a little... the pain has since subsided and think that it was because of having a couple week stretch without much activity and also the weather...

But it has been almost two years since my last pvns-free MRI, and it is time to go through the process of getting the MRI pre-approved through insurance, getting the referral to my Boston doctor from my primary care doctor approved by the insurance company. I called them last week, my insurance company... because since last going to Boston I have switched primary care doctors... so I wanted to make sure that I jump through all the necessary hoops before my June appointment.

It should go off without a hitch. SHOULD being the key word. In the past, this process has not been without obstacles. When I called my doctor's office I spoke with my doctor's assistant and explained to her what needs to happen before June. She had my file in front of her, but like most people, even medically trained folks, was unfamiliar with PVNS. I told her that this appointment and process causes me some anxiety and explained that my old doctor's office did not handle things well. She assured me that she will be on top of it and will keep me in the loop, saying she will call me this week.

This summer will be four years since surgery...very hard to believe. I have been lucky so far... and am going to think that when I see my doctor in June, he will say, you are good to go... you don't need to come back unless you have problems again...

Fingers crossed!

Leap of Faith...

I like this quote...

'Happiness is like a butterfly; the more you chase it, the more it will elude you, but if you turn your attention to other things, it will come and sit softly on your shoulder...'
- Thoreau

Possibilities...

For as long as I can remember I have been someone others perceive as being an optimistic person. For the most part, I would agree with that. However, I am learning, about myself, that it is hard for me to trust that optimism.

It's not that I don't believe that good things can happen... I do, very much. And it's not that I don't believe that I am deserving of good things... I do... but... I am learning that I don't necessarily expect the good things to last. I think that the last few years, actually probably four or so... have taken a bit of a toll. When things seemed to be calming down, getting to a place where things were 'normal,' (yes I hate that word, but I just used it!) and then the bottom would fall out, leaving me to once again find my bearings and once again start finding balance and ways to cope.

So, for me, I guess there is some fear. Fear of believing in good things...because I am afraid of getting my hopes up and then getting the proverbial rug ripped out from underneath me.

I want to change that thinking... and have a little more... faith... in the universe, that good things happen to good people...

The events in recent years tested the faith that I had in any kind of religious icon... and while I have never been a person who considered herself religious, before all of the drama of the last few years I did explore my spirituality. Some of my blog readers may recall a book that I would reference from time to time, "Conversations with God." I read that book, reread that book, and would use it as a quick reference at times, when I was pondering various aspects of my life... and once in a while I would sit, closing my eyes, thinking about something about which I wanted direction or answers, and I would open the book to a random passage and read what was there... often times those passages would offer some clarity and others, would simply raise more questions... but I will admit, it was, the majority of the time, relevant. (But then again, knowing me, I know I can probably overthink anything into relevance!)

I don't remember exactly when, in Mom's illness, I stopped testing the spine of that book, when I stopped opening it... but I remember a point when it was a conscious decision. I remember, on one of many sleepless nights, turning on the light and looking at the book, wondering if it would offer any comfort, and remember seeing only the word "God" in the title... and deciding that, through her battle with cancer, "god" was anything but someone or something I wanted to thank, regard, or acknowledge. And it was a decision I made, knowing that my mom's faith, in god, never faltered.

After she died, I resented sentiments about her death being part of God's plan...that people were praying for her and our family... that because of God, she was no longer suffering... All of those things were irrational to me, watching what I still cannot fathom, any 'god' would allow to happen to anyone, especially my mother.

But...recently, in the last couple of months, I have found myself eyeing that book... and about three weeks ago, I took it off my bookshelf and opened it randomly, with no thoughts in my mind... and did not read any of the printed words, but took notice of the underlining I had done, the exclamation points I had added, the comments I write in the margins... and started pondering this whole faith thing... it resonated with me at one point...deeply.

For a long time I have kept faith and religion separate. Believing that I could have faith in things, people, ideas, without believing in a 'higher' power. But I have begun wondering how faith can exist without a belief in a higher power of some kind. God? Maybe. Maybe not. I think having faith means that you believe that something else is 'out there' willing to help or support one's efforts.

So I have yet to once again pick up the book 'Conversations with God'... but I think I will, and soon... One part of it's philosophy has been in my mind lately... the idea that there are two emotions in life, love and fear... To be honest, I have thought more about the fear aspect in the last week or so...

Most people know that I am a single woman...I have been pretty successful at being single... though typing that makes me wonder what exactly that really means... but... I have been pretty self sufficient, haven't lamented too often about my singleness... and have learned that imperative lesson that it is better to be happy alone than miserable with someone... I have had some relationships.... but none of them have been what I hoped a relationship would be... I have watched my friends have various experiences within their marriages, within their relationships, and within their dating adventures... and have been able to be the person who cheers everyone on, who is happy for everyone else...

As I went through the process of losing my mother, one of my best friends, there were times I wanted nothing more than to be held in the arms of a man that loved me...and was often lonely without those arms...looking back, however... during that time, I would not have been the partner in a relationship that I would have wanted to be. In a recent exchange with my sister we talked about how the last few years have been kind of a blur and we 'existed' through them... an image came to my mind of a jellyfish... feeling at times like there was a while world happening around me and I was kind of stagnant, jerking myself up once in a while, out of an instinct to survive... but that I really was numb for a while... This is what I wrote to her:

"I think things with Gramie getting sick, even, started things stopping if that makes sense... Mom getting sick made it worse... I kind of feel like those few years of my life are... like jellyfish... not solid...and take on different shapes... somewhat transparent, yet complicated... stinging... I have only recently (last 6 months or so) begun to feel like I am back... or I am me ... again... no longer in slow motion watching life happening around me..."

Looking back now... I realize that had I been in a relationship at that time, through all of that... I am not sure it would have survived... While many people who read my blog say I am articulate in my thoughts, there is a method to my writing. My words, on some level, spend time in my head long before they land here. Had I been in a relationship during mom's illness...and maybe even back to when my knee was so messed up and I was in so much pain I couldn't function... it would not have worked. Timing. Timing, I believe, is one of the main keys in a relationship's success or failure.

I have found myself in conversations with some of my single friends who are in the dating arena and have offered some advice that I have always turned my nose up at... that when you least expect it something will happen, that you have to be okay with being alone before you can be okay being with someone, that there is someone out there for you... and to my surprise, I have truly believed the words I was expressing.

Being single is something about my life I have always hoped would change... that I could file my taxes as a married person instead of single... that at my doctor's office I would have an emergency contact other than my father or sister (no offense Dad and Sis.) ... but I think I have also done well at not wallowing in it... in those hopes and often disappointments... but I have always wanted it... not for the checking of boxes or emergency contact, but because I was someone to spend my life with... a best friend...someone whose arms surround me in love and safety, and someone who finds the same in mine... and I am ready for it... and it scares me a little...

There is part of me that is nervous, if I dare to pursue something that I am excited, very excited about, will it somehow put things into jeopardy? Will it upset the perceived balance that has come to my life? (Even though the balance is not where I would want it to be...) And there it is... FEAR. Fear that I have a shot, a chance, at finding something REAL... and I worry about it being taken away... hmmm... taken away... wow... see there's one that has not been swirling around in my head.. it just arrived, just now... I have been mulling things over in my head.... worrying that something I want to move forward with might not move forward... but... what i just realized... is that what I am really afraid of is that it will be taken away...

Perhaps you may think that it's really just a matter of semantics... between something not working out and something being taken away.. but... it is very different in my mind. It's a control thing. If something doesn't work out, yet I have put effort into it, I can continue to move forward, just in another direction... if something (or someone)... is taken away... it is something for which there is no preparation...

I have no reason to believe that current happenings won't continue to evolve... but fear is present... and I need to eradicate that fear. I believe in possibilities... and if I have faith in fear and not in love, I will attract those things/circumstances I fear...

So... I am on a path to restore my faith... not sure where it will take me... I have begun looking at some churches even... although I am no where near ready to go to a church where credit for all things beautiful and rosey is given to god and where bad and evil things are rationalized as part of a plan created by that same god... but... I want to see what is out there...I want to see what a sense of community within a church is like...(considering a unitarian universalist place to start...whose philosophy it seems, is that prayer is offered through service to others...and accepts ALL) I may find that I still am unsure of whether or not a god could exist, I may go back to feeling more spiritual seeing 'god' in nature's beauty...maybe I will become more convinced than ever that I am just not a church person... and maybe I will find something new...

I do not want to choose fear over love... and will beleive that good things are happening and will continue to happen...

My Valentine...

I do have some sad news to report... My wonderful cat, Tess, recently became ill, and on Valentine's Day, I made the difficult decision to have her euthanized. She is the cat pictured as the top cat over on the right. I had her since the summer of 2000. Her kidneys, the vet said, seemed to be too small for her body. The vet suggested that we try to give her some medication and fluids to see if her cold like symptoms would suppress and she could survive longer... so I tried to nurse her back to health, including having to give her IV fluids at home for a few days. (Yes I had to jab her with a needle.) But she did not improve...and was not eating... and I could not let her suffer... She was a cat with a distinct personality... definitely my cat, not warming up to others well and no matter how hard he tried, she could never be befriended by my dad. She was the matriarch of my feline pride... and will be missed...

Those who know me well, can probably guess that it made me think a lot about my mother's death and how long she suffered... I know there is no comparison between losing my mother and losing one of my cats, obviously... but... there were some triggers that took me back to things with my mom...

Rest in Peace Miss Tess. Thanks for your love and comfort over the years.

Signs of hope...

I saw a robin recenlty. I was elated to see that red breasted bird flitting about in a tree still buried in snow. It means that spring is coming, a definite sign. It has been a long winter, lonnnng winter. I am not one of those Mainers who loves winter. I don't ski and prefer to be outside when the water is not frozen, when I can kayak.

I had some anxiety about how I would survive this winter... it is the first winter I have not coached in a long time. Coaching was something that helped me pass the time during winter; it helped me keep my mind off the fact it was so dark and cold around me. But I am happy to say that without coaching I have managed to not only survive, but have been able to live... Time that was consumed by practices and meets was used to finishe graduate work and spend time with the people in my life... of course there is never really enough time to spend with the people you love, but it has been nice to have more control over my time. I have wored on the tolls some, but not a lot.

This spring seems brighter to me than in recent years. I am graduating, from a program that I have been working on for what feels like, years and years. The truth is, I think it's been about a five year process... Five years seems like a long time to finish a masters... but there have been some bumps along this road...my knee, my grandmother's battle with cancer and death, and Mom's battle with cancer and death... okay, maybe those are more than just bumps along the way... I told my professor recently, that it is nice to finally see the light at the end of the tunnel getting brighter and this time I KNOW that it's not a train coming at me!

With earning my masters degree I have decided that it is time for me to spread my wings a little more and loko for a new job. I love the work that I do with the kids... students with special needs have inspired me and will continue to do so as I transition into either a principal or assistant principal position. I firmly believe that what is good for kids with disabilities is good for all kids... meaning that tools/strategies that help kids who have disabilities can also help kids who are classified as 'normal'. As a leader of a school I look forward to being able to set the tone of an entire building, not just my calssroom. I am going to be very selective in the jobs for which I apply and accepting of a job that will hopefully be offered to me. I don't want to have a job as an administrator for the sake of having that role... I want to be in a place that is an incredible place for kids.

I feel.... do I dare to put this out there? Or will the universe use it against me to try to teach me yet one more lesson about the harshness of the world?..... I feel like good things are on the horizon... and this is definnitely a turning point for me... not just career-wise...

Reflection on PVNS

The snow has finally hit! It looks like winter out there... brr... I am not a huge fan of winter, but this too shall pass... Today's post is sparked by an email from a fellow PVNS sufferer... I have been emailing back and forth with someone in the UK who was supposed to have surgery this week, but it had to be rescheduled.

I am so glad that she wrote to me... her story is perhaps most similar to mine, compared to others who I have heard from. She told me that today she passed up the opportunity to have dinner with coworkers because she knew there would be no place to elevate her leg. I remember those days... refusing offers to go to people's houses because it would require walking up stairs or because I knew I would have to be standing around instead of sitting. Her emails have reminded me of just how much my life was impacted by pvns... so much of my daily life was difficult because of it.

I am very fortunate that I have recovered as well as I have. I can say that physically, my knee is great and I have been told I have no limitations. Ironically this week I had put on my calendar a reminder, to call my pvns doctor in Boston to see when my appointment is this summer... so pvns has been on my mind a lot. Additionally a friend of mine was talking to me about my gym routine (or lack there of lately) and asked about my limitations due to my knee.... my response was immediate because I have said it before... I don't have any limitations... this person then asked me about specific things I do at the gym with weight training, how much weight I can leg press, bench press etc. Through that conversation I started thinking about where I was physically, before pvns entered my life...

I was about 100 pounds lighter than I am now...after having lost that 100 pounds before pvns arrived... my surgery was 3.5 years ago... so why have I not lost the weight again? Well... there have been some emotional roller coasters... losing my grandmother and mother to cancer... through which I did do some activities... I have walked 2 half marathons, to prove to myself and the rest of the world that my body is not broken...and I have done a lot of zumba... and my back seems to have been in a funk for a while now... but... when I think about it.. I think that PVNS is still in my head... I haven't gotten over it yet, on a psychological level. The fear that it will return is still very real. I do not push myself as hard as I could push myself because I worry that perhaps if I do too much something is going to trigger the return of a disease that consumed my life, pvns.

Because there is no known cause for pvns, the chances of me doing something to trigger it's return are non existent... and my thinking is a little ridiculous. There is a 50% recurrence rate, but in those cases it seems that the surgeons have not been as aggressive as mine was... the kind of surgery I had has the best results... and it hasn't come back in three years... so... there is a lot to be happy about, to feel confident about... yet.. it's in the back of my head a lot. I have managed to get to the gym three times since Saturday. I would have gone today but the roads are really too bad for that. On Monday night I used the leg press machine and remember setting the weight at a level where I could easily do it.. I still do the weight training machines one leg at a time... which I did following surgery because my left leg was so much weaker after surgery. I know I could have done more weight, but didn't. I did what was easy, do-able...

Having battled weight long enough and taken enough classes, I know that if I want results, weight loss and muscle tone, I need to step it up... Of course I need to do so slowly and make sure my body can handle what I put on it... but I think I am ready to start challenging myself a little more than I have been. I said good-bye to pvns in July 2007 when I had my surgery.... at least physically... and I have managed to forget that I had pvns... well maybe not forget, but put it in the back of my mind at least... but it has managed to still get to me.

I think being more conscious of it will help me... help me find the balance between pushing myself and being smart about it. I really want to take this time to get healthy... I have a lot of good things going on and a lot to look forward to.. including looking for a new job... I will be graduating with my masters in May and will be looking for a new job... and I want to be feeling good, feeling like I have my health in a good place when I make that transition.

Thank you, Abi, for your emails this week. I know that you are suffering with pvns, and know, all too intimately, how you are feeling. I just looked down at my scars... and it is amazing how much they have faded... but they are still there... a reminder of something I endured... and am still conquering.

In the town where I grew up there were two grocery stores, Shop'n Save and Lounsberry's. Shop'n Save was the bigger, traditional grocery store, on the outskirts of town. Lounsberry's was a smaller market, located more in the center of town. I remember shopping at both stores with my parents and visiting Lounsberry's when my sister worked there as a cashier. Lounsberry's had character... a small store, owned by a local businessman who was the father of one of my classmates. The store had the automatic doors that swung open when you stepped on the mat. The floor in the aisles were uneven, unlevel, and sometimes made noise when you walked on them. The shelves, if I remember correctly, were wooden... and I seem to recall a sense of familiarity there...I remember a lot about that store...It has been closed for years and one of those chain pharmacy stores is in its place... the other store, the bigger one in town, Shop'n Save, was pretty non descript. I think I remember orange and white tiles on the floor... this store was renovated a few times so I don't really have clear pictures of what it looked like. One memory I have about both places was the process of checking out. At Shop'n Save I remember my mother conversing with the cashier and with the grocery bagger. I remember the bagger asking my mother, or grandmother, whoever I was with.... if they needed or wanted help getting their groceries from the store to the car. At Lounsberry's it seems that I remember the bagger wouldn't ask that question, but instead would just put the groceries in the cart and start pushing it out the door toward the parking lot in anticipation of getting directions to the car in which the groceries would be loaded.

Another memory that stands out to me about Lounsberry's is that many older people in the community shopped there. It was smaller, easier to maneuver around in, and closer to town, which meant less driving or walking for some... As the Shop'n SAve got more popular in town, which probably caused Lounsberry's to go out of business, I remember `my grandmother preferring to shop at Lounsberry's because of it's personal approach.

The last couple of times I have been at the grocery store where I regularly shop, a big box chain grocery store... it seems that I have seen several elderly people there... shopping alone... looking fatigued... seeing them in the parking lot walking those extra steps from the handicapped parking spot their cars are parked in to return their carts to the place they belong... because they are of that generation that does what they should do... the right thing... even if it means more fatigue...The timing has yet to be such that I can offer help, by taking the cart to one of the cart storage thing...

We hear on the news, that there are more elderly people than ever... people are living longer. Yet, these big grocery stores, and even big hardware stores... are not accommodating people. Grocery stores should still at least offer to take someone's groceries to the car, especially for older people. I mean... look around, the next time you go shopping... notice the elderly people who are walking slowly, who are so tired from having to walk around such large stores...
at least there is a bench near the checkout of the store I go to, and often older people sit on the bench for a while to catch their breath to make the trek to their car.

What has happened to customer service? To looking out for each other? Especially our elders? Shame on you, grocery stores... for not helping people take their groceries to their vehicle and then taking the cart back.... I have made a mental note to try to time things when an older person is leaving a store and offer to help them. I can't wait to see how they react... maybe I will also start getting behind an older person and suggesting to the bagger that they escort the person to their car...

Triggers

My Dad and I headed to NY to spend Christmas with my sister and her family. Our hotel room was on the third floor and when we got into the elevator the floor was carpeted... and it immediately reminded me of the elevator in the hotel that was attached to the hospital where my mom had her surgeries... where my dad, sister, and I spent much time.... The elevator had a carpeted floor and placed upon it each day was a smaller rug that had the day of the week written on it... which somehow helped us keep our sanity and helped us keep track of the days... people who have spent any amount of time in a hospital or staying close to someone who was in the hospital, know how crazy the time gets... hard to keep track of... So when I see carpeted elevators I think of the days of the week carpet...and of the hotel attached to the hospital... and how miserable we all were...

While in NY for Christmas...I mentioned it to my dad in one of our elevator rides and he had forgotten the day of the week rugs... and I regretted reminding him of it... it seemed to change his demeanor somehow... we try hard to be okay, to have moved on.. but there are triggers... things that jump out at us and remind us of all that was endured... After reminding Dad of the days of the week carpets we started using the stairs at the hotel instead of the elevator... just one of those things.

It was good to be together for Christmas, good to be with my sister and her family. The excitement that the kids had for Christmas eve and Christmas day was fun... they are good kids... all three of them are similar in many ways, yet have their distinct personalities... the oldest is very focused... loves to read and can spend hours making a project including an origami creation he spent hours working on, building, taking apart, and rebuilding... without frustration... I would have thrown it in the trash! The middle nephew is a free spirit, goes wherever the wind takes him and sometimes the wind blows pretty strongly, as he changes direction often and quickly. He is a very smart kid to whom m any things come easy...yet he struggles to keep himself in control at every turn... and the youngest... he's kind of been the one most difficult to describe... he's the youngest and plays that card at times, wants so badly to be like his older brothers yet loves to be coddled and cuddled... he is also smart, and has a sweetness and innocence underneath his pouty exterior... I adore them all.

My mom would have loved seeing the boys and how they have all changed. She would have been right in the mix with us all, making candy, decorating cookies, and playing games...

And we started a new tradition... or perhaps it will become a tradition... it was actually one of my favorite parts of the trip... apparently there is a tradition in certain parts of upstate NY and other places too... where a pink peppermint pig is passed around a table... each person at the table says something they are thankful for or something prosperous that has happened to them in the last year and then hits the pig with a hammer... this smashes the pig into pieces and the pieces are shared... with the hopes that the good fortune will continue... Dad's friend/girlfriend sent it with Dad for us all to share. It was a nice addition to our time together.

Christmas...

I have not decorated for Christmas this year... I have one thing hanging on my wall, that has been there since last Christmas... a slate my mom painted that has a Santa on it, sitting in a wooden chair, examining his list... and I am sure, checking it twice. I hung it last year not because it was Christmas... but because my mom loved Christmas... The last few Christmases have been hard... Last year was the first Christmas without mom... the year before that was spent in the hospital following what was Mom's last surgery...and the one before that also involved the hospital in some way...

Last year Christmas came with dread and went with relief... Dad and I spent part of the day with his side of the family and it was lovely...but, to be brutally honest, I had forgotten about how the day was spent. One of my friends said something about if Dad and I were going to once again be with my Aunt and other relatives... it was kind of one of those, "oh, yeah..." moments... I am not sure I could have recalled that information without my friend prompting that memory...I mentioned it to Dad and he had not remembered the day either. I think last year we were both focused on 'being okay' about the holidays and worked hard to not be sad in front of each other... and I think the consequences of that, was that we went through the motions of the day without really experiencing any of it. I feel guilty about it because my Aunt, Donna, did a great job at welcoming us into her home and invited people to join us and people were kind enough to oblige. She is a wonderful host, presents food in delicate, elegant ways, and makes even a snack a dining occasion... I am grateful for her... for the kindness she extended to Dad and me last year... Thank you, Donna. In thinking about it... I remember that I had coaching obligations, a track meet the day after Christmas.... which gave me a much wanted reason to return to my apartment/life, and leave Christamas behind me. Of course there was guilt about abandoning Dad, but there was part of me, and I am sure part of him too, that was relieved to have my own space to just feel the numbness of it all without having to interact with anyone... sounds kind of selfish I suppose... but it's the truth...Two years ago, on Christmas, I remember resenting people... people who were able to celebrate the holiday season, when my family was reeling...

So as this year's holiday season approached I noticed I was not feeling resentful or numb... I was appreciative of the festivities, the lights, and the music... and gave myself permission to either decorate for xmas or not... Being candid... I do have to say that this year, when I have been writing things about this holiday, I have referenced December 25th as xmas... which in the past upset me...not because I am religious, but because I did think that people forget the reason for the celebrations...but... this year 'xmas' feels like a short cut... and it feels easier somehow... not sure I can articulate it well, but it feels like xmas makes it less complicated... gives me permission to 'x' out things I don't want to endure or think about... I kind of expected that I would decorate... but as the time passed and life got busy, I didn't. Yes, I can blame it on my schedule, my graduate work and responsibilities... but I could have found time, if that's what I truly wanted to do. But... I have really enjoyed seeing what other people have done to celebrate, the lights, the sentiments... and am okay with it being christmas... I am sad at times, still missing my mother.. still very intense at times, heartwrenching... and I do get sad... Mom loved the spirit of Christmas... and she would never leave Christ out of Christmas... but this holiday, I am not sad... I wouldn't say I am happy either... but I am... just am... not numb...and I like that.

My students are so exicted about Christmas... although they have all shared their high levels of stress about it... they are excited... they are 6th graders... and think they are too old to still believe in Santa..but desperately want to believe...I have enjoyed allowing myself to see it through their eyes... they are good kdis... really good kids. Some have warm supportive homes, some will have ample packages under their trees... some will fall asleep xmas eve to their parents, or a parent and their significant other, fighting... some will ask Santa for a shorter vacation so that they can go back to school where they feel the most safe and secure... but they all want to believe... not necessarily in Santa... but in the idea of him... a man who brings joy, happiness, and things one can only dream of...

The last couple of years, I have not believed... this year.. I want to believe... and maybe next year... maybe next year Christmas will bring with it joy, hope, and the ability to believe...